Sarah's Health Soup

And an improvement...

2012-01-18T13:29:00.000-08:00

This is the most oddly random improvement and I'm not sure how to explain it. After all that doctor mess in Dec. I somehow got it into my head that I should go back on the Depo-Provera shot. I noticed that my gastoparesis got a lot worse around my cycles and also mid-cycle. I thought maybe there was a hormone trigger involved and perhaps calming the hormones down would fix the stomach.

Well lo and behold! I got my injection on Dec. 27 and my stomach calmed down IMMEDIATELY. I have not had a bout of diarrhea since! I have an appetite again! Everything is working again and I have even gained a couple pounds back.

The only thing I have figured out is perhaps I was suffering from some kind of hormone imbalance such as PCOS. I have suspected this for YEARS (the infertility being one of my main clues) but the doctors in my town were really not good at diagnosing that sort of thing. So I just sort of ignored it. But apparently PCOS does cause your gallbladder to go haywire as well as other digestive probs. Now I still have the low blood pressure which I'll probably ALWAYS have but at least the hormones aren't aggravating it. I feel so much better.

I'm able to eat sugar again, small amounts of tomato and even small amounts of peppers. (Those are not the best but I just love the flavor too much.)

Finally I don't feel like I'm starving away to nothing :-) Wooooo!

Another reason I wanted to try it was to see if it would decrease my migraines. The jury's still out on that one. I have noticed a bit more hypermobility in some of my joints but I'm not sure if the migraines are better or the same. To be continued. . .

Good news for a change

2012-01-18T12:21:00.000-08:00

I got to see the famous EDS specialist Dr. Brad Tinkle! I had made this appointment several months ago not sure if I'd even be able to make it down. But I did! Luckily it didn't snow that day. Not a trace of snow that day. It was kind of a tiring trip but well worth it and I would recommend him highly! My hubby had the bright idea (!) of leaving early in the morning so we wouldn't have to spend the night in Cincy. Good idea in theory but bad in reality because it was way too exhausting. We got there just fine with plenty of time to spare, but Dr. T. was running behind so we spent a good hour waiting before we even saw anyone.

When we finally got in it was for me to be weighed/blood pressure taken, etc. Then I saw another nurse who asked me about meds and some of my medical history. Then another girl came in (a student I think) who asked me more in-depth medical history questions such as if I've had any hernias, asthma, growing pains, that sort of thing. She had many questions to go through.

Finally we got to see Dr. Tinkle. I didn't tell him a whole lot because I wanted to have an unbiased opinion. He looked at my feet and noticed they over-pronate. I said, "Yeah that's what Dr. Grahame said, too." Dr. T. said, "THE Dr. Grahame???!" That's when it came out that I'd already been to the EDNF conference and was on the support groups, etc. But like I said, I wanted an unbiased opinion.

He said right away that I DO HAVE EDS HYPERMOBILITY TYPE. This was a relief for me because it confirmed what Dr. Lavallee and Dr. Grahame had said earlier. But, I never had an official diagnosis on paper and that was why I was there! I wanted to confirm the type, and get the diagnosis on paper so I could show my docs at home. Dr. T. said I need to get some inserts for my shoes to stabilize my ankles (Dr. G. had also said this but I never got around to it...)

Dr. T. said some of my migraines may be due to TMJ probs. I told him I do have a splint I wear every few nights, but when I'm having spasms in my neck it is uncomfortable to wear it. He said that what I really need is PT for my TMJ. I never got that - just a splint. So he researched a PT for me to see up here that can help me with that.

He also had some medication recommendations he wrote up for my doctor in the same letter explaining my EDS diagnosis.

The weirdest/most interesting thing he said was that my gastroparesis is caused by my POTS and low blood pressure! So the only things I can do are continue to eat the small frequent meals, avoid eating cold things or too much fat/fiber, drink plenty of water and eat plenty of salt. My gastroenterologist was right in a way. But wrong in how he gave me NO insight!

He also recommended I get his book (not so he could become rich - he noted that he still drives a Hyundai). He said it was for my own info. and for my doctors at home to reference. http://www.amazon.com/Hypermobility-Handbook--Management-Ehlers-Danlos-Syndrome/dp/098257715X/ref=sr_1_2?ie=UTF8&qid=1326921378&sr=8-2

So I went ahead and ordered that. I was VERY excited with all the info. and the confirmation that I have been right all these years after all.

Rude inconsiderate people at the holidays!

2011-12-27T08:59:00.000-08:00

Again I am floored. Apparently there is someone at work who complained I am eating during work hours? I am once again very upset. It is upsetting to deal with health issues and then to have rude, inconsiderate and petty people to deal with on top of it??! I'm not sure who "mentioned" this to my boss but then I had to explain to my boss what was going on with my stomach/digestive tract and how I have to eat "small frequent meals"! She really didn't know, and now she can tell these people next time they comment. Still I was very hurt that these people were being so petty. I don't really like to tell everyone my entire health saga. #1 it's none of their business and #2 it's TMI for people without EDS! I save it for my close friends/family members and other EDSers. I figure it's on a "need-to-know" basis. And these co-workers really don't need to know. They know I don't eat certain foods and they know I had my gallbladder out recently but they couldn't guess from that there might be more?! Are people that dumb?? OR just inconsiderate? It was very embarrassing because I felt like I was being accused of being a bad worker; like I don't want to work - I just want to eat and goof off. And all these people are watching me goof off and gossiping about me behind my back with no regard for my feelings or well-being. Then I got upset and started crying AT WORK.

I barely escaped "not crying at Christmas" by preparing my own food for all parties. At one party there was literally nothing I could eat besides cheese cubes and what I had brought. I could feel the emotions welling up at others' lack of understanding and empathy but I smashed the tears back down. That is just what I go through with the stomach crap. And no it's not better - I think I lost another 5 lbs. Blech!

Dealing with it on my own. . .

2011-12-16T10:37:00.000-08:00

So after being extremely pissed off at all doctors for about a week I decided I was on my own for now. I Googled gastroparesis and looked up what tips I could. Turns out there are LOTS of other EDSers dealing with this same nasty problem. There ARE some things I can do besides the obvious frequent small meals! (Thanks for nothing, doc!) One of the things they sometimes prescribe is antihistamines. So I went to Walgreens and got myself a $4 box o' Benadryl!!! That was the very first thing I did. I have noticed that if I mess up and eat something "bad" (tomatoes, gluten, milk, etc.) I will feel tons better if I take some type of cold medication. So I thought hey maybe this is the key. I decided to start taking Benadryl and see what happens and that has made a WORLD of difference. It might not be the best solution but it's the best I can do right now.

I am also eating my "small frequent meals" - eating about 5-6 small meals. If I eat too much at any one time my stomach will cramp up and I will get diarrhea. I guess my GP is not severe because I never throw up, but I'll feel kind of nauseous and groggy also if I eat too much.

I've been avoiding too much fiber and too much fat as the not-so-helpful nurse repeated to me that can slow the stomach down more. But I learned more in 10 min. on Google than I learned from that lady. . .

Meanwhile I also lost my acupuncturist. He had been sort of irritating me lately too. He accused me of being "too stressed out" but I am quite sure stress does not cause GP! He moved to another state which I totally understand but I don't appreciate being made out to be a "basket case." Before he left he gave me a few more tips for my stomach. He didn't have a clue on EDS or GP but he told me some things that would soothe the stomach lining. I probably won't miss him :-) Although it will be interesting to see if I get better or worse without my acupuncture treatments. There is another acupuncturist that took his place I can always look up if I need to.

Not a happy camper

2011-12-16T10:06:00.000-08:00

It has taken me a couple weeks to post this because I am extremely unhappy with my doctor and unsure what to do. He did diagnose me with gastroparesis but he said it was "mild." When I asked the nurse on the phone about the other findings of the scope she said it was just consistent with gastroparesis (GP for short); the food not emptying properly from my stomach is irritating the stomach lining. I said, "Don't you want me to come in for an appointment or something?" and she said, "No just eat frequent small meals and call us if it doesn't get better." She claimed there were no meds for it. I was TICKED!!!! No not ticked, PISSED!!!!! Because I knew there were meds. All you have to do is Google GP to find a list of meds.

They don't want to give me the meds which is their choice but why lie to me and treat me like I'm stupid? Why not SAY you don't want to give me the meds, or SAY the side effects are nasty or give me a few other options other than "frequent small meals" which I have already been doing all flipping year?! I felt totally brushed off; I was continuing to lose weight and unable to eat. I had just received this diagnosis but was still having symptoms and at a loss for what to do. I felt myself getting very angry and started arguing with the nurse about what to do and finally I thought you know what?? I'll play your dumb game and pretend to eat "small frequent meals," but I'll be calling you right back in a few weeks :-(

I wasn't sure what to do for several days. Part of me wanted to call them back and yell at them; part of me wanted to play nice and play their little game because hey everyone deserves a second chance and maybe, just maybe, it wasn't the doctor's fault. Maybe it was the nurse giving me the brush-off. Also, there are not a lot of GI docs in my area and I don't want to lose this guy unless I have to. I researched a few other GI docs but I didn't have any assurance they wouldn't brush me off like the others. A HUGE part of me didn't have the time or energy to mess with them. Finally I decided I would just wait until the holidays were over as all the doctors' offices seemed to be very busy and distracted. I will call them then and say, "I am eating small frequent meals but gosh darn it! :-) I am still having problems!" And see what they say. If they brush me off again, I'll find another GI doc.

Gastric emptying study

2011-12-01T10:14:00.000-08:00

This test actually sort of sucked more than the upper endoscopy. They made me eat egg beaters laced with some nasty radioactive dye or something. I don't eat eggs anymore, so they felt like a big pile of rocks in my stomach and I felt very queasy... but apparently eggs work best for this test in my doctor's opinion. Then I layed under a scanner machine for 60 seconds as a picture was taken of my belly. This was repeated at different time intervals. Luckily I was able to get up and read my book, use the restroom etc. in between pictures but it took FOREVER and I was not allowed to drink even a tiny sip of water for four hours after eating the eggs. At the four-hour mark, they took my last picture and I was free to go, eat, drink and take meds etc. At that point there was a raging blizzard going on and I thought it was definitely up there with one the weirdest days in my entire life. But, hopefully they will tell me the results within the next couple of days.

Meanwhile the vitamin D definitely has calmed my tummy a bit and also I did some research and saw that calcium supplements can sometimes help with bile after gallbladders have been removed. Apparently something in the calcium sort of soaks up the extra bile that is now flowing freely through. So after I got used to the vitamin D I started taking some Citrical tablets and those have helped a LOT - WOW! Maybe I won't have any more of those "rushing to the bathroom with the IV bag" spells ever again :-) I wish someone would have told me this little tidbit before! I guess that's not something people go around talking about. I do still take bile salts and digestive enzymes but I was still having a diarrhea attack maybe once a week until I took the calcium now - none!

Endoscopy report!

2011-12-01T09:55:00.000-08:00

Oh my goodness they actually found something this time. That's all I can think ;-) I wasn't sure whether to hope for finding SOMETHING or finding NOTHING... in the end they found at least four issues!!!! Going in, my stomach was extremely crampy because I'd eaten some salad and some cheese the day before. Not smart. After I'd already been hooked to my IV I had to run into the bathroom. Rather embarrassing! The nurse asked if it was nerves and I said no - it was probably from what I'd eaten the day before. The nurses who prepped me were a bit impolite and that didn't help my stomach calm down. They asked me if I'd lost weight and I said yes, 20 lbs. They said "WHAT????!" in shocked tones. I was like ummm yeah that's why I'm here. (Kind of rude, if you ask me.) But the nurses in the procedure area were very nice. It all went very smoothly and I had very little pain.

They said I would be too groggy to remember any of this but I heard everything the doctor said afterwards. He said I had gastritis, possible heliobacter pylori, damage from celiac disease and problems with stomach emptying. Apparently there was a pill just sitting in my stomach not going anywhere?! The stomach emptying was the "kicker" for me - I had heard of that happening with EDS but I didn't really consider it. But apparently that has been the main issue! They sent me home to rest and scheduled a gastric emptying study for the following week.

I went home and rested for the day, watched TV and chatted with my mom who'd been my chaperone. I kept waiting for my throat to hurt but it really didn't at all. I was just sort of tired. The next day I got a migraine probably just from the stress. THAT WAS IT! A pretty simple test and I felt so vindicated that I've been right all along about what was wrong with me; problem was I just took too long to get it checked out and/or the symptoms were too vague to get anyone to take them seriously! And the gastroparesis/slow stomach emptying is a total EDS and Chiari "thing" which also makes me feel vindicated after all these years. So in a way I was happy to find out all these things were wrong with me so at least now I can do something about it. And most of all now people will know I AM NOT CRAZY! :-)

Low vitamin D?

2011-11-15T10:29:00.001-08:00

The gastro. also wanted to do a few blood tests. The only one that came back abnormal was that my vitamin D was too low.

http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-deficiency/what-is-vitamin-d-deficiency/

http://www.webmd.com/diet/vitamin-d-deficiency

http://www.womentowomen.com/healthynutrition/vitamind.aspx

http://ods.od.nih.gov/factsheets/vitamind

So, I am now taking a Vit. D supplement to try and get that level back up. I'm not sure if this has been part of my problem? Is this why my bones feel soft and squishy to me? I feel bendy like gumby. I always guessed this was an EDS thing but maybe it was a lack of Vit. D as well. Hopefully he will re-test me again in a few months!

Gastroenterologist report!

2011-11-15T10:13:00.000-08:00

Yes I finally made it in to the gastroenterologist :-) He is a super-nice doc and seems very smart. I liked him right away. He didn't ask me a million questions but got right to the important ones. I tried to focus also; I could be there all day talking about my gazillion symptoms but I had to hone it down to the ones he could help me with. Basically I told him my stomach cramps up and causes pain when I eat certain things. It alternates between too fast and too slow. He examined my stomach and said it must be coming from my stomach or small intestine area (or at least he wants to check there first) and is recommending an upper endoscopy.

Upper endoscopy, also called esophagogastroduodenoscopy, or EGD, uses a thin scope with a light and camera at its tip to look inside of the upper digestive tract -- the esophagus, stomach, and first part of the small intestine, called the duodenum.

Usually performed as an outpatient procedure, upper endoscopy sometimes must be performed in the hospital or emergency room to both identify and treat conditions such as upper digestive system bleeding.

The procedure is commonly used to help identify the causes of:

- Abdominal or chest pain
- Nausea and vomiting
- Heartburn
- Bleeding
- Swallowing problems

Endoscopy can also help identify inflammation, ulcers, and tumors.

Upper endoscopy is more accurate than X-rays for detecting abnormal growths (such as cancer) and for examining the inside of the upper digestive system. In addition, abnormalities can be treated through the endoscope. For example:

Polyps (growths of tissue in the stomach) can be identified and removed, and tissue samples (biopsies) can be taken for analysis.

Narrowed areas or strictures of the esophagus, stomach, or duodenum from cancer or other diseases can be dilated or stretched using balloons or other devices. In some cases, a stent (a wire or plastic mesh tube) can be put in the stricture to prop it open.

Objects stuck in the esophagus can be removed.

Bleeding due to ulcers, cancer or varices can be treated.

- From http://www.webmd.com/digestive-disorders/upper-endoscopy

I have been putting this test off all year but since my tummy has still been bothering me I figured it was time to finally "suck it up" and get it done :-( Plus I've met all my deductibles for the year. So that part will be nice. Everyone tells me it's a pretty easy test to have done. I wonder what they will find in there.

My acupuncturist says:

2011-10-14T09:53:00.001-07:00

This is due to "Low Spleen Energy" and my body does not have energy to digest food properly. He said to only eat warm cooked foods and to avoid cold and stress. He also told me to eat chicken and rice soup (which I do already) and gave me a few more herbs to try. The thing is with my EDS I don't know if this will be enough and I might need more medical help - so this is why I need the GI doc's advice. The way the acupuncturist described it was, "Your body doesn't have enough energy to deal with the stress that comes your way."

Hmmm.

I did find a few websites that described this low spleen energy and it is pretty much what my body is doing right now. Just not sure how to get rid of it all!

http://www.mybodywisdom.net/pdf/Spleen_Qi_Nutrition.pdf

http://www.acupuncture.com/education/zf/spleen1.htm

http://www.balfourhealing.com/treatment-ibs.html

Not much new - but new appointment!

2011-10-14T09:37:00.000-07:00

Not much is new except that my stomach continues to be super-sensitive. I finally made an appt. to the gastroenterologist. There was a gluten-free/wellness fair at our local hospital a few weeks ago and I discussed my digestion issues with the ladies who work at the GI doc's office. I explained what was going on and how I'd called them waaaaay back in March or so but I'd been sidetracked by the gallbladder probs and never made it back. I described the stomach pain and cramps and they wanted to know where the pain was located. I explained it was in the lower bowel area and they "OH you need to come in!" I wasn't sure if I needed a NEW referral or if I could just use the old one. I was sort of waiting to see if my stomach would calm down on its own. Considering it wasn't and it was going to take another month to get in I finally broke down and made an appt.

(This picture depicts how I feel when my stomach is acting up) :-(

My body seems to have 2 modes now: There is the old mode of super-slow digestion and migraines which I have had for about 10 years. Then, it will kick into super-fast digestion and stomach cramps with NO headaches but feeling so weak I don't want to do anything. At this point my concentration will be very low. So I sort of waffle between the two. I can't say which is better but I have had less headaches! My body seems to be incapable of finding a happy medium where digestion is at regular pace and there are no migraines and energy is at a steady level. Once I get the cramps to calm down through diet or stress control, it goes right back to the slow digestion and migraine pattern. Very strange.

Doing better

2011-09-20T09:36:00.000-07:00

I haven't been online much, due to job constraints, but overall I am doing pretty well. Topamax is helping me quite a bit. My stomach has been going crazy, though, and I'm not sure why. I asked my family doc about it and he thought it was gallbladder related. Which is odd because my gallbladder and lack thereof has really not bothered me since April! Only certain specific foods will set my digestive system off! But oh my it really was going crazy for about the past month. Since it happened the same time I switched to Topamax I wasn't sure if the 2 were related. But, I also took a business trip about that same time where I was under a lot of stress and eating "questionable foods" as I like to call them :-(

Then I caught some kind of virus on top of that, and there was stress involved from getting my son back in the swing of the school year...

I went back on my extremely bland low-fiber diet just to get my stomach to calm down and that seemed to work. It's now pretty much back to normal. I just have to be really careful not to eat the things that irritate it. I WISH I didn't have to take these meds which seem to make it angry but there is really no way I can get rid of all my meds! I am down to Toprol XL, Topamax, Armour, and occasionally Relpax and OTC Tylenol (aspirin free). I think that is pretty darn good.

Yesterday afternoon I went to my massage guy (woo!) whom I've not seen in over a year! He had a kidney transplant and is feeling tons better now. I told him my whole saga of the past year. He noticed I lost a lot of weight due to my healthy diet. I said that was not intentional. I try to eat as much as I can; my tummy just doesn't tolerate large meals, grease or sugar. So I'm OK with being skinny for now. It's also nice to have a girlish figure again for when you want to wear a fancy dress. He checked out my lymph nodes and said I hardly have any lymph node swelling at all. He said I am his healthiest client!!!! That made me feel so good. Although I do have pain and my body is so bendable apparently the inside of me is squeaky clean and healthy. That made my day!!!! :-)

Back on Dope-A-Max

2011-08-29T09:34:00.000-07:00

OK experiment time is back! I recently saw a preliminary report on how EDSers may be suffering the effects of low-grade hydrocephelus.

This seemed to make a LOT of sense to me and perhaps why I've been going downhill the past 2 years since I switched to Lyrica? This lady recommends Diamox which lowers CSF pressure. Some preliminary research on my part seemed to tell ME (I'm not a doc but still)... that the Topamax was having somewhat of a Diamox effect! Lyrica was not so I switched back. I can feel a difference already - WOW! Although I am still a bit groggy trying to get used to Topamax again I am pleased with myself that I figured out this is part of my problem. The slurred speech is gone, the sore shoulder is a tad better and I seem a bit more "myself." As an added bonus, they have come out with a new generic form of Topamax so it is CHEAP! I'm not sure why my neurologist tried to force me to try Lyrica. I guess it was worth a try and it did help somewhat, but was doing nothing for my head pressure. I knew there was no way I could convince my doc to get me on Diamox since my pressure has never been measured but Topamax is pretty common and I've done well with it before. I just told him I thought I liked it better and he said, "Sure, why not?" :-)

Heating pads and more heating pads. . .

2011-08-08T09:48:00.000-07:00

I have been destroying heating pads :-( Especially in winter when my back aches, I get those standard plug-in heating pads, and then I pull on the cord so much it destroys it. After my last somewhat expensive one died, I started using my microwave rice pack. It works good except I get tired of always having to microwave it, and then it gets cold after an hour or 2. Where my dad worked, some of his co-workers complained it was gross that he microwaved rice packs where they put their food. Also my former cubicle neighbor complained that it smelled like rice. She would ask me if I was eating?! So I'm always paranoid about that, too.

I found an interesting site: http://www.quantumheat.net/

This is some type of gel pack you boil, and then you push a button and it heats up! WEIRD! But I might try it as an alternative to the microwave rice pack. I just don't like the whole office thinking, "Oh there's Sarah with her back pain again, what did she do this time?" I'd rather just be discreet and private about it. Maybe this other type of pack will work. Another thing that would be awesome is if there was one you could plug in and heat, then disconnect until it gets cold and plug it in agian. I'm going to keep shopping until I find the perfect one!

In a holding pattern. . .

2011-07-22T09:41:00.000-07:00

In other health news, I'm kind of in a "wait and see" holding pattern mode. There are a number of things I'd like to get checked out, but I'm waiting to see which thing bothers me most!! As I mentioned in the post below, my shoulders flare up VERY badly anytime I try to do anything requiring arm power. I get migraines a couple days after I use my arms too much. They pop, grind and feel like pins and needles - very strange. But, I don't really want another shoulder surgery so I'm a bit nervous to go back to the orthopedic place.

Then I'm starting to have some pain in my left thumb again. It flared up last summer, too so maybe it's from the extra outdoor work? It hurts whenever I try to use it. It's sort of swollen, too. I got some more glucosamine to see if that might help.

Then there's my GI tract which is still not 100%. I have to be very careful not to over-do anything in the NIGHTSHADE family (tomatoes, peppers, potatoes and eggplant). I start getting very painful cramps in my abdomen if I eat too many of those. Also beans give me a lot of strange stomach problems. And of course anything oily like avocados or sunflower seeds cause me to have diarrhea from the extra bile coursing through my system :-(

My knee has its good and bad moments. I thought it was getting a lot better, so I rode my bike several times and walked on it for several hours last week. Although I was wearing my brace for those activities, it still flared up quite badly and was popping and doing all kinds of weird things.

So yeah... just sort of waiting to see which of these things will get worse, and which will get better!

Kratom report

2011-07-22T09:36:00.001-07:00

Well I've taken about 4 Kratom capsules so far! I went to the health food store and got some empty gelatin caps, and I carefully filled a few. The fact it takes some work to make the capsules kinda helps me not to go overboard. I've been taking 1-2 capsules per week, mainly on the days I overdo it (large amounts of walking, cleaning the house, gardening, manual labor, traveling, etc.) These activities tend to "flare" my shoulders really badly :-( Although it doesn't get rid of ALL of my pain, it does help get me through those busy days.

I notice quite a bit of pain relief right after I take a capsule. It does seem sort of like a Tylenol 3 or something of that nature. Pain relief - and I get a tad loopy for a brief hour or 2. But overall I think it helps! I'd recommend it for people with chronic pain.

Kratom

2011-07-06T09:53:00.000-07:00

I've heard about a special herbal pain relief called "Kratom". It is a leaf used for years in southeast Asia for pain and mood issues.

http://www.sagewisdom.org/kratomguide.html

http://www.kratomblog.com/2007/09/several-ways-to-ingest-kratom.html

http://www.kratom-world.com/kratom_usage.html

http://www.kratomtincture.com/kratom-tea/how-to-make-enhanced-kratom-tea-advanced

I'm going to try it and blog to you all if it works :-) I've tried all the basic pain relievers such as vicodin, percocet, Tylenol 3 etc. and they all have unpleasant side effects. I'd like to see if this herb can have a similar effect for my "bad days", and then I don't have to constantly be calling the doc asking for meds!! These pain relievers can be addicting so I'll be very careful to only use them on days I really need it - maybe 1-2x a week?

The Loose Shoulder

2011-06-28T09:48:00.000-07:00

This pretty much describes me! My left shoulder has done pretty well after it "popped" back into place a few weeks ago. However the right is still a "train wreck" with lots of spasms and pain.

I thought this was a very interesting article:

http://www.maitrise-orthop.com/corpusmaitri/orthopaedic/112_kelly/kellyus.shtml

Still here!

2011-06-28T09:37:00.000-07:00

This month has been a whirlwind - I can barely believe it's almost over! Our family took a trip to Seattle (first time)! I figured I was crazy at first, for taking such a big trip 2 mos. after surgery but it was all great. I did have some tummy troubles the first day due to eating some avocado. I forgot how much gallbladder problems make eating avocados difficult. . .after that I was good to go. I was a bit tired, and the cold drizzly weather and changing altitudes made me feel a bit sick at times. But all-in-all I was able to enjoy it. The strangest part was that the airplane rides made my knee hurt and burn but now the knee is better! Perhaps it was all the walking I did? I did wear my knee braces everyday while out west. But when I got home, I realized I didn't need the braces everyday and I could actually BEND and KNEEL again! WEIRD!! But we're glad to be home :-)

Iodine - detoxing

2011-06-09T09:49:00.000-07:00

Well I have continued on my iodine drops and have noticed a big improvement! Interestingly I was doing some research on PCOS and iodine deficiency.

http://www.optimox.com/pics/Iodine/IOD-10/IOD_10.htm

http://www.earthclinic.com/Remedies/iodine.html

http://pcosinfo.com/iodine-deficiency/

These were just a FEW of the sites I found that pointed to a link between these 2 issues! I've not been diagnosed with PCOS.

Symptoms of PCOS
•infrequent menstrual periods, no menstrual periods, and/or irregular bleeding
•infertility (not able to get pregnant) because of not ovulating
•increased hair growth on the face, chest, stomach, back, thumbs, or toes—a condition called hirsutism (HER-suh-tiz-um)
•ovarian cysts
•acne, oily skin, or dandruff
•weight gain or obesity, usually carrying extra weight around the waist
•insulin resistance or type 2 diabetes
•high cholesterol
•high blood pressure
•male-pattern baldness or thinning hair
•patches of thickened and dark brown or black skin on the neck, arms, breasts, or thighs
•skin tags, or tiny excess flaps of skin in the armpits or neck area
•pelvic pain
•anxiety or depression due to appearance and/or infertility
•sleep apnea—excessive snoring and times when breathing stops while asleep

- http://theiodineproject.webs.com/fmscfsfbdpcosadrena.htm

The reason I was pondering this was of course the infertility but also I've started to notice some odd hair growth. I'd say I have about half the symptoms on the list above. I was just curious if maybe the PCOS could be caused by iodine deficiency, because I have been noticing such a HUGE improvement on the iodine. However since I've been without enough iodine so long, I don't want to take too much at a time. I've felt my back muscles slooooowly starting to relax. Last weekend, my left shoulder let out a huge POP and seemed to release! Then, it was quite sore for several days and now it feels awesome! So, I think the iodine is helping to relax some of the muscles, and the joints are now able to relax back into their original positions. I'm still waiting for my right shoulder to release. It's still sore and cramped up.

Just about everyone I try to tell about this iodine improvement does not believe me. But I've tried just about everything and this is one of the best things I've done - no joke! Most of us have been brainwashed to believe we get enough iodine in salt. Fact is, that is just enough to keep us from not getting goiters, but not enough for true health. Also there is IODIDE and IODINE - 2 slightly different nutrients and we need both! I'm only taking 150 mcg. of iodine right now, which is the daily recommended dose. A lot of these sites recommend WAY more than that. I'm not a doctor or health professional so proceed with caution on any of these things. All I can say is that it's really helping me.

Iodine

2011-05-31T09:13:00.000-07:00

Sorry I've not updated this blog for a couple weeks :-( I haven't been on the internet as much lately, but I'm doing great! My brother got married 2 weekends ago which left me totally exhausted - but NOT as exhausted as I thought I'd be!! I lasted through the entire day and was out on the dance floor boogeying down! In fact I was one of the last to leave the dance floor. It felt good to get some excercise, even though my knee complained about it for several days. One thing that may be contributing to my new-found energy is I've started taking iodine. I started it a few days before the wedding and noticed an instant improvement! Also, many of my muscle spasms started to fade. I still have a lot in my neck/shoulders but I'm hoping maybe they will go away more with time?? I found a bunch of interesting websites by a Dr. Brownstein.

https://www.drbrownstein.com/bookstore_Iodine.php

http://www.amazon.com/Iodine-need-cant-live-without/dp/B001URN3UG/ref=sr_1_7?ie=UTF8&qid=1306859024&sr=8-7

http://www.youtube.com/watch?v=Cho8yQt3Co8

I realized that I live in one of the most iodine-deficient places ON EARTH! And I know my thyroid tends to be swollen and I'm slightly hypothyroid. So, I went to the health food store and bought some liquid iodine (not iodide which is found in table salt). I took the very smallest dose as I didn't know what it would do to me ;-) 150 mcg under the tongue. I immediately felt very relaxed and sleepy, like my body just wanted to sleep and heal! But I kept taking it and the sleepy feeling went away. Next thing I noticed was certain muscles started relaxing (days 3 or 4). After about a week the pesky "crick" in my back went away. The one thing I noticed was slightly more migraines; but I'm not sure if that is from the extra activity or some bad things I ate. I have a feeling that my body is "detoxing" and so I'll feel a bit worse before I get better. Also, the spasms going away has made me more unstable than usual. I'm going to stick with it and see how much better I feel after ALL the spasms go away! I can't believe how well this stuff has worked for me so far. Obviously my body was low on iodine and I didn't know it.

One day at a time... Sweet Jesus

2011-05-11T07:44:00.000-07:00

This is an old gospel song they played incessantly on a commercial when I was a kid. I thought it was hokey at the time. But the other day I was feeling pretty terrible and worried, "How will I survive Chiari, EDS, and a foster kid?" And that song popped up in my mind! ONE DAY AT A TIME. Hey I can do that! Hubby cleaned the kitchen for me while I took a nice relaxing shower and plopped into my recliner for the evening. The next day and a Relpax later, I was feeling 80% better.

I had called the department of child services lady about 4x and was worried she hadn't called me back. Lo and behold! Yesterday she finally did! I was soooo excited but tried to keep calm. I told her about how we were on the other list for over 3 years and nothing happened. She said she'd send us a release form, and then they could get as much info. from the other agency as possible, so we wouldn't have to duplicate! She seemed very positive and upbeat about us getting a child soon. In fact she asked how MANY children we wanted! I told her with my health, I couldn't handle a lot, so she put us down for 2. (Hubby didn't like that part, BTW!) She said we could always change our mind on the number later. Since we are interested in adoption eventually, they will refer us a child whose parental rights are terminated or about to be terminated. She said there is still a small possibility the judge can award rights back to the biological parents but it is small. In that case, we'd be referred another child and start over. I told her after waiting this long we were willing to risk it! So basically I just have to wait for the forms to arrive, fill them out, and see what happens next! ONE DAY AT A TIME!

My tummy is feeling quite a bit better. I tried to eat a large meal last night which didn't get handled the best but - my appetite is definitely back! I can eat chicken and beef again. Still not able to eat beans, tomatoes and peppers though.

Infertility sucks.

2011-05-05T08:02:00.000-07:00

Part two of the post below. Just in case you didn't know, infertility sucks big-time. Just when I think I'm over it, something will happen to bring it all back again and I'm sitting there crying my eyes out. This time was when I had to call the 2 adoption agencies and tell them to put our files "on hold." They both said, "Sorry to hear about your health issues. This would be a good solution for you. Let us know if you change your mind - good luck!" Then I sat down and had a good cry.

Right now I'm reading a book called Emotional Freedom by Dr. Judith Orloff. I was just reading the sections on dreams. It basically says that dreams are trying to tell you things that still need work and BOY do I have some weird dreams!! I just had another one last night about childbirth. I can't really remember it except I was in a maternity ward. But I've had some really odd ones like, I go into labor but nothing comes out. Or, I give birth and the baby dispapears. OR, the baby turns into some animal like the baby who morphs into a pig in Alice in Wonderland.

Amusing yes but I wake up feeling so sad and depressed. I don't think people who are fertile or don't want kids have any clue how painful this is. Even knowing my solution and being excited about it, I still feel this horrible pain. I'm not sure what to do about it. It doesn't help it that certain family members like to rub it in my face that they are pregnant or that they have more kids than I do. It's not like I CHOSE that "fate" for myself. It just happened. Maybe it happened for a reason. In fact it probably did but I still need to process this nagging pain that won't go away - and how to get rid of the nightmares?? I found this cool blog and the author and comments pretty much describe all the emotions in gory detail http://parentingsquad.com/my-name-is-lori-and-i-am-infertile-surviving-depression-caused-by-infertility I felt so much better when I read this. I've noticed that the emotions are NOT LOGICAL. They're just THERE. I can tell myself a million times how lucky I am for my son, how I can't handle a pregnancy or baby physically, how I don't want to pass my EDS on to another person, yadda yadda yadda. But it is still there - that ongoing pain and mourning.

Soul-searching

2011-05-05T07:25:00.000-07:00

I didn't post this 'cause of all the insanity going on last month, but hubby and I have come to a new decision. We decided NOT to update our domestic adoption paperwork and instead investigate adopting through the foster care system.

This was a complete surprise to me; I was about at my wit's end with the other adoption paperwork. It's been 3 1/2 years since we applied to do it and we heard NOTHING from them. We were even on another agency for one year. So on one agency for about 3 years, and another for 1 year. All they could tell us was that we were on the waiting lists but prospective birthmothers were not choosing us.

Finally we got our packet of info. to be updated right around the beginning of April. I was really dreading this because a.) I was not feeling well enough to physically DO it, b.) It is horribly expensive and we were still paying off medical bills and would be getting MORE medical bills, and c.) The emotional stress it causes me to even think about it.

However I dutifully strove to fill out all the little forms and worksheets. I even scheduled our health re-checks (The most expensive part, since insurance covers none of it). Then about 2 days later I had to call and cancel the physicals because hubby told me he had changed his mind, and was open to adopting through foster care! You could've scraped me off the floor with a spatula!! I had tried talking him into this idea just under a year ago! I'd carefully laid out the pros and cons. But he was not interested in it at that time. Somewhere along the way he decided I was right (maybe after my surgeries?!)He could see that physically taking care of an infant would be very difficult for me. At least with an older child, they can climb into the bathtub and bed by themselves, and can dress themselves for the most part. Also the age gap between my son and another child would be lessened.

I was so happy that night, I could barely sleep! It felt like Christmas. Finally he had seen the light :-) My imagination went into overdrive. Would we get a boy? A girl? What would they look like? What personality would they have? What would their name be? How old? Did I need to redecorate the spare bedroom for them, etc.? My mind whirred a millions miles an hour that night. The next day I "came back down to earth" with more practical matters. I called the department of child services lady I'd spoken with last year and got a few SIMPLE and FREE! forms to fill out. Much better than the other forms. Then, I e-mailed a co-worker who has gone through this same process. She gave me some really useful info. #1 tip she said is it's VERY DIFFICULT, emotionally and very tiring. OK, I've come this far and I pretty much knew that. #2 tip she said was to get a child 5 or younger. After age 5, the personality is pretty much locked into place and you can't mold them. This was very important for me because I could then ask them to refer us a child 5 or under. I know it will be a hard road but physically and financially speaking it will be a lot more practical for us.

Zebrapatient.org

2011-04-29T11:14:00.000-07:00

I love this blog:

http://www.zebrapatient.org/

Especially this part:

I know three zebras, all of whom are the opposite of what the public probably expects. Rather than complaining about blown veins or the chest pains that are actually signs of a heart attack, zebras are likely to handle bodily complaints casually, joke about them with people who understand their disorders—or to say nothing at all. I suspect we develop this strategy, based on years of hearing family members and doctors refer to us as complainers, attention-seeking, or just plain nuts.

Wow! This is exactly how I feel! I'll be following this blog for more insights :-)

Released

2011-04-29T10:57:00.000-07:00

Well my surgeon officially released me today. My surgical scars looked good (I tend to heal well) and he said I can eat "anything I want." Uh-huh. Something about me feels unsettled in that place but I'm not sure why. I guess it's the fact they don't understand how much I know. They think I'm your average run-of-the-mill patient who doesn't research and takes their word on everything.

The reason I say that is I asked if I had metal clips and he said, "WHY?!" in a very odd tone like, "Why would you need to know that?" I said "Oh in case I ever get an MRI. Sometimes they ask."

He said I have a few titanium clips in there, but MRIs should not hurt it.

I also asked how large my gallstones were, and he said the biggest was 1.2 cm. That is pretty darn big, and I'm glad that didn't get stuck in the duct! He said the labs revealed my gallbladder was fine except for inflammation and stones.

My final question was about irritable bowel. My bowels are still not working quite right (probably from my EDS). He said if I did have IBS, the gallbladder being removed would not do anything for that. So, I'll still need to see the gastroenterologist! I think I'll give it a few weeks, and then call my family doc again and say things are better but not 100%. I don't expect that this will take care of all my issues. I am realistic. But, I'm glad to be able to eat again!

Bile Salts or Ox Bile

2011-04-26T12:20:00.000-07:00

I read a couple places that if you don't have a gallbladder, it helps to take something called "Bile Salts" or "Ox Bile."

http://www.amazon.com/Nutricology-Ox-Bile-Vegicaps-100-Count/dp/B0002JIUDS/ref=sr_1_1?ie=UTF8&qid=1303845628&sr=8-1

Most surgeons are blithely ignorant about the lost function of the gall bladder in patients who cholecystetomy. All patients lacking a gall bladder suffer from deficiency of bile acids. Patients lacking a gall bladder are unable to control bile secretion into the intestines to regulate proper absorption of fats, fatty acids, and fat soluble vitamins. Proper removal of toxins depends on bile acids that are not available in appropriate quantities after cholecystectomy. All persons who have had cholcystectomy need to take bile acids permanently. Without a gall bladder the patient has lost the ability to stock up on fat that can be used as a source of calories in illness and famine, essential fatty acids and fat soluble vitamins(A, D, E, K).

- From http://www.newswithviews.com/Howenstine/james63.htm

I was able to find these capsules at my local health food store, and plan to take them indefinitely. The doctor said there was a BIG gallstone in front of my duct. I'm not sure of the exact size, I'll be asking him Friday! Not completely lodged in the duct, but blocking it pretty badly. My theory is that this was making it impossible for the bile to flow and all the bad stuff just kept building up (toxins, extra hormones, etc.) I really hope that this will be a key part in healing my body!

I made it!

2011-04-26T12:08:00.001-07:00

My gallbladder was removed just over a week ago. It was not nearly as bad as I'd feared. . .Except when I first woke up and thought "This must be what it feels like when you're dying." I felt very weak, queasy and dizzy and not even sure if I would be able to get home. They gave me some apple juice which made me even more queasy, and gave me some more fentanyl and anti-nausea med. Between that, and the anesthetic I was buzzing pretty badly. For home, they gave me some Tylenol 3's. Apparently I was white as a sheet and my blood pressure was low but I willed myself to perk up just so I could make it into the car and get home.

Once home I had terrible back pain, pain in my stomach of course, shoulder pain, etc. I was tired but I could not sleep because there was no comfortable position to get into. I didn't want to eat because of the queasiness and not being sure if it would go through too fast. When I did finally force myself to eat some chicken broccoli rice casserole I'd made the day before, I did perk up even more. That night was a fitful sleep from all the meds but the second day it was all better.

I was able to walk around and cook a couple of things to eat. My mom came over but I didn't really need her assistance for anything. We just talked and watched TV together. As the week progressed I was able to do more and more and the pain was pretty much gone.

I was able to hobble into church on Good Friday and actually SING! People at church couldn't believe it. Of course before the surgery they said "Oh yeah you'll be better by Friday." But when I actually was, they were surprised. I felt totally fine just tired! Saturday we went to my in-laws and Sunday we had church again and lunch with my family. Yes I was exhausted by that, but doing well regardless.

I kept waiting for those horrible episodes of diarrhea but they didn't happen until I ate some tomatoes. Just a little tiny bit of tomato juice in a salad - oh man my stomach was NOT happy! So I had to buy some Immodium to help that. Otherwise no major problems.

Simple?

2011-04-05T06:47:00.001-07:00

I just need to vent a bit - with the current stress I'm under. I can't eat anything and my migraines have been back to pre-acupuncture levels! Although the surgeon said my migraines are not related to the gallbladder, I've been experiencing other increased symptoms such as:

Cold hands/feet or Raynaud's symptoms
Sweating
Anxiety
Flushing of face
Paleness of face
Dizziness
Weakness
Nausea
Clumsiness/trouble walking
Trouble speaking correctly
Skin itching
Extremely low blood pressure
Lack of appetite

So what is all this?? I am starting to suspect that I'm having dysautonomia flare-ups from the stress of my surgery, lack of exercise, gallbladder etc. The thing I need to vent about is that everyone I try to talk to has some brilliant idea of what is wrong with me and it is usually something VERY SIMPLE and EASY!

Not to brag, but I'm a very smart person. I was the top student in my high school class and got A's in college easily, too. So I am rather insulted when someone who doesn't know anything about Chiari or EDS says things like "Well you should just exercise your knee more," or "You should eat more meat," or "You should just go live by yourself somewhere." Hinting that if I only exercise, eat a certain thing or get rid of 100% of my stress I will magically get better. Sorry, but I don't think this is the case. If there was something simple I think I would've discovered it by now!

In the case of those with simple ideas, they ARE trying to help but I feel that they are not listening! I eat the healthiest diet of anyone I know, I do have some stress but I think my attitude toward it is healthy and I do a lot of research about both western medicine and alternative treatments. I get the best of both worlds; some western treatments help and some don't. Some alternative/eastern treatments work and some don't. I've tried almost everything there is and I'm a walking medical experient. So please, please, please don't give me simple solutions until you have listened to my 10-yr. saga of EDS, Chiari and who knows what. Thank you!!!

OK so my gallbladder is going bye-bye

2011-04-05T06:22:00.000-07:00

I went to the surgeon Friday to discuss my gallbladder results. Although the Hida-Scan showed the gallbladder was contracting normally, it made me incredibly sick. Also it's full of gallstones and the stones will just keep growing back. He wasn't sure at first if the gallbladder was causing the problem but when I descibed exactly how the test made me feel, he said it should probably come out :-(

I was rather upset about this, since I've already had one surgery this year! This would only be the fifth real surgery I've ever had done (excluding pain shot procedures). I've had my widsom teeth out, a heart cath for my tachycardia, the right shoulder surgery and the left knee surgery. So it's a pretty big deal for me to have two so close together.

I felt like bursting into tears at the surgeon's office. After leaving and having a good cry, I pondered the situation all weekend long. My mind just needed some time to mull it over. After the weekend was over I was feeling much more at peace! This surgeon is EXCELLENT - very kind, caring, smart and experienced. The lady who scheduled my surgery said "If it's the gall bladder, Dr. G usually KNOWS," and gave me a knowing nod. He didn't pressure me to have it out, he gave me options and he explained everything well. He asked me if I had questions. He even gave me a booklet and a website complete with animations and explanations about what they would be doing.

Also, I heard from a lot of my family and friends who've had their gallbladder out. They all said it helped them and they didn't have problems. The only issues were eating too much greasy or spicy food, or certain types of raw veggies. They also said to take bile salts or ox bile to help digestion. I've been researching the gallbladder a lot, and I feel it probably has something to do with my EDS and dysautonomia. More on that later. . .

Hida-Scan

2011-03-30T08:08:00.000-07:00

Monday, I had another interesting experience - a Hida-Scan.

A HIDA scan is an imaging test used to examine the gallbladder and the ducts leading into and out of the gallbladder. In this test, also referred to as cholescintigraphy, the patient receives an intravenous injection of a radioactive material called hydroxy iminodiacetic acid (HIDA). The HIDA material is taken up by the liver and excreted into the biliary tract. In a healthy person, HIDA will pass through the bile ducts and into the cystic duct to enter the gallbladder. It will also pass into the common bile duct and enter the small intestine, from which it eventually makes its way out of the body in the stool.

- From http://www.ivillage.com/what-done-during-hida-scan/4-n-142347

This test went really well for me and I didn't have any issues during the test to speak of. It was really boring though - laying on a gurney for 1.5 hrs. and waiting for the dye to show up on the screen. Then, they added something else to make the gallbladder contract. I could feel a slight cramping feeling as the gallbladder did its thing. I was worried about nausea or dizzyness, but I didn't experience any more of that than what I was already feeling due to a migraine.

I was SICK SICK SICK as a dog even before this test. I ate some MSG or something accidentally at a Mexican restaurant Friday and my body has been in revolt :( I literally could not do anything all day Sunday. I managed to drag myself into work Monday to finish some deadlines, but it was extremely harrowing. I took all day yesterday off trying to recoup and still felt like something the cat drug in! I could not figure out if it was the MSG, my gallbladder, the gallbladder scan, the weather or what. It was extremely worrying. Today I am finally feeling somewhat normal. Friday I go back to the surgeon to hear the results of my Hida-Scan!

Bike ride = swollen knee

2011-03-18T08:29:00.001-07:00

My knee has been feeling pretty good. I am able to walk moderate distances, but this sometimes causes pain later. At least I can do it without feeling queasy! The other day I walked several blocks on pavement and had a lot of pain the next day. I hobbled around on it for a few days, then finally had the idea of doing some Reiki on it. The knee let out a huge POP and then felt so much better!

I got a new bike with my birthday money this year. A Huffy Cranbook Cruiser. Not a fancy bike, just a standard "cruiser" I can tool around the neighborhood in. Yesterday it was up into the 60s! So I decided to take it for a spin. I immediately found that my legs are weak from not using them for 2 months :-( I was gasping for air a bit and my muscles got tired easily. Plus, the wind was blowing against me so I had to work twice as hard to pedal. . .However it was a nice smooth ride, the seat was comfy and the bike felt nice and sturdy. Plus it is unbelievably CUTE!!! I'm hoping the cuteness will be enough motivation for me to actually ride it and get some exercise! I even bought a little white wicker basket to go on the front.

I was pretty proud of myself I was able to ride around the entire block. However when I got home my legs felt all wobbly, like jello. Then the bad knee SWELLED UP BADLY! Today, it still feels sort of bad. Kind of like I went backwards in my recovery. I really want to ride my bike again, but my knee is popping and still feels pretty unstable. Maybe next time I should wear my knee brace while riding. . .

The gallbladder problem is still weighing on my mind. I asked a massage therapist/energy healer to work on it and I'm also applying Reiki. I'm also drinking a lot of apple juice because that is supposed to soften the stones and help them pass through! I did feel a tad better after this and was able to eat some beef and pasta. However I don't want to "push it" by eating anything sugary or spicy. Tomatoes still KILL ME and cause indigestion for days. My family misses their tomatoe-y dishes like chili and spaghetti but - I just have to be careful. Sucks.

Gallstones

2011-03-11T11:33:00.000-08:00

My doctor called me finally to say I have gallstones. I am really not impressed with this finding. I hear that MANY people have them and it doesn't necessarily mean much. According to http://www.emedicinehealth.com/gallstones/article_em.htm, 20% of people have them! 60-80% have no symptoms and require no treatment.

They are referring me to a surgeon to discuss the state of my gallbladder. I am going to work up the courage to say heck no - you are NOT cutting my belly open unless those stones are huge! I am not going to let them cut me up for more money unless I really need it!!!

Then I also found this little tidbit:

Individuals with Crohn's disease of the terminal ileum are more likely to develop gallstones. Gallstones form because patients with Crohn's disease lack enough bile acids to solubilize the cholesterol in bile. Normally, bile acids that enter the small intestine from the liver and gallbladder are absorbed back into the body in the terminal ileum and are secreted again by the liver into bile. In other words, the bile acids recycle. In Crohn's disease, the terminal ileum is diseased. Bile acids are not absorbed normally, the body becomes depleted of bile acids, and less bile acids are secreted in bile. There are not enough bile acids to keep cholesterol dissolved in bile, and gallstones form.

– from http://www.medicinenet.com/gallstones/page3.htm

So I guess I would just like more information about this. If I do have Crohn's, will the stones keep coming back? Do I have Crohn's? I hardly eat any fatty foods anymore. So why else would I have these?

Gallbladder ultrasound

2011-03-02T12:03:00.000-08:00

In the never-ending quest to feel normal again, my doctor has decided I need an ultrasound of my gallbladder! I have no idea why, really. I wanted a referral to a GI doc, but my family doc wanted to see me first. He poked around at my belly, asking where the pain was. Basically the pain is all over my entire belly. The upper part feels more queasy and the lower part more crampy. That's all I can say!

He recommended some "FiberCon" tablets and some samples of acid blockers. I will try these cautiously as I await my ultrasound and GI appointment!

This is an example of what I ate yesterday to feel not so queasy:

• Gluten free granola with agave nectar and almond milk (breakfast)
• Sunflower seeds (snack)
• Oatmeal and granny smith apple with almond milk and a touch of maple syrup (lunch)
• Salmon and cooked spinach (dinner)

As you can see, this diet is completely bland and boring :-( I've also been drinking Linden tea when the stomach cramps get too bad. However it tends to make me too warm and give me heart palps if I drink too much of it. So for less severe cramping I've been drinking Chamomile tea instead. This seems to have the same type of effect, just less strong.

I am also having some stomach pains and anxiety type feelings. Why? I hope the new doc. can tell me why!! Is this my gallbladder? I feel nauseous when I don't eat, but more nauseous when I do.

Complex migraines or auras?

2011-02-25T10:46:00.000-08:00

http://www.cbsnews.com/8301-504763_162-20033424-10391704.html

Most people have seen by now the video of Serene Branson talking gibberish due to a migraine. Strangely, the first time I saw it I KNEW it had to be a migraine! When I have them, I get the same sort of feeling. I feel like my mouth is numb and my tongue doesn't work right. I can still talk but the words don't get prounounced quite right. Also I get really clumsy and bump into things, drop things, etc. I looked it up and the one term for this is "complex migraine." Other sources I read stated that these symptoms are merely different kinds of "migraine auras."

I have had some visual auras before but not regularly. The few times I experienced them, I saw flashing lights in all the windows (I thought there was a lightning storm)! Then, I saw diagonal lines in my peripheral vision. But, the speech and the lack of coordination happen almost everytime.

Migraine with aura is characterized by a neurological phenomenon (aura) that is experienced 10 to 30 minutes before the headache. Most auras are visual and are described as bright shimmering lights around objects or at the edges of the field of vision (called scintillating scotomas) or zigzag lines, castles (teichopsia), wavy images, or hallucinations. Others experience temporary vision loss. Nonvisual auras include motor weakness, speech or language abnormalities, dizziness, vertigo, and tingling or numbness (parasthesia) of the face, tongue, or extremities.

- From http://www.neurologychannel.com/migraine/index.shtml

Now that I know this I will definitely watch out for more aura symptoms. Due to the NSAID issue, I've been taking Excedrin without the aspirin (Tylenol and caffeine only). The caffeine really helps with my migraine symptoms! A lot! My stomach is still a bit touchy but it's getting better :-)

The danger of aspirin and NSAIDs

2011-02-16T06:06:00.001-08:00

I am still waiting for my stomach to calm down, but it hasn't 100%. Just the thought of eating tomatoes or anything sugary or spicy makes me queasy. This makes me sad, because I really wanted to go to an Indian restaurant for my birthday :( I love Indian food, but my stomach just can't take it right now. My massage therapist recommended a few things I could eat that she thought would help: cabbage, sauerkraut, brussels sprouts, aloe juice, and any type of squash. She said anything in the cabbage family (cruciferous veggies) is good for the digestive lining! Furthermore, sauerkraut is fermented and so it contains helpful probiotics. Strangely I can't get enough cruciferous veggies and I LOVE sauerkraut! So I've been eating a lot of "bland" things as well as my veggies.

Meanwhile I was doing some research on NSAIDs. I fear that the NSAIDs are what got me into this predicament. They were tearing up my stomach but I didn't know it! I got very queasy from the Mobic/Meloxicam they gave after my surgery, but I thought it was the Tylenol 3? I took Meloxicam for several WEEKS! While also taking aspirin for the neck/shoulder. I might have taken a few ibuprofin in there too.

•Non-steroidal anti-inflammatory drugs (NSAIDs) bring symptomatic relief to many patients with arthritic, inflammatory or other conditions; however, the benefits of these drugs must be balanced against the upper gastrointestinal (GI) side-effects associated with their use.

•Through systemic and topical effects, NSAIDs impair the mucosal barrier to gastric acid, which, together with the action of pepsin, may result in upper GI symptoms, peptic ulcers and ulcer complications.

•Upper GI symptoms, such as heartburn, are common among patients taking non-selective and cyclo-oxygenase (COX)-2 selective NSAIDs, and can have a considerable impact on patient quality of life.

•Peptic ulceration is also a common consequence of NSAID use, and potentially life-threatening ulcer complications are a serious health issue with significant associated medical costs.

•Although COX-2 selective NSAIDs are associated with a lower risk of peptic ulceration compared with non-selective NSAIDs, patients with risk factors and those taking concomitant low-dose acetylsalicylic acid (ASA) therapy for cardioprotection remain at risk.

•For patients who are at high risk of ulcers and complications, effective and well-tolerated prophylactic therapy should be given alongside the NSAID.

- From http://www.gastrosource.com/disease-area-information/11674565?itemId=11674565

Other NSAID articles
http://www.acg.gi.org/patients/women/asprin.asp
http://gateway.nlm.nih.gov/MeetingAbstracts/ma?f=102274352.html
http://www.ccfa.org/info/treatment/nsaids

People with Crohn's are very sensitive to NSAIDs (which I didn't know!). I DID have a bad reaction to Naproxen once where my legs swelled up! I guess I didn't really think about it or make the connection until now. Excedrin had been my "go to" pain reliever for several years – my cheap easy way to deal with the everyday pain. I never took more than one dose a day, but now I'm wondering what damage has been done. Hopefully since I quit taking ALL NSAIDs, my body will be able to regenerate itself.

Luckily I haven't really noticed any adverse effects to STOPPING the NSAIDs which makes me think I was taking them for nothing. So all those people who were harping on me about "rebound" headaches were wrong! I've only taken a couple Tylenol 3's, and I save them for my bad days. Otherwise I use my essential oils, massage, Reiki, TENS, heat/ice packs and I've been getting along fine. One of my friends even said I sounded "chipper"! WOW!

Linden tea

2011-02-09T07:24:00.001-08:00

I am super excited I found an awesome new remedy: Linden tea!

The major active constituents in linden are flavonoids, glycosides, and possibly a volatile oil. One study found that a complex mixture of compounds, primarily flavonoids, reduced anxiety in mice. Although used as a traditional herbal remedy for anxiety, these results have not been confirmed in human clinical trials. Older clinical trials have shown that linden flower tea can help people with mild gallbladder problems (but not gallstones), upset stomach or dyspepsia, and excessive gas that causes the stomach to push up and put pressure on the heart (also known as the gastrocardiac syndrome.) Linden's reputed antispasmodic action, particularly in the intestines, has been confirmed in at least one human trial.

- From http://www.skaggs.net/module.cfm?xyzpdqabc=0&id=349&action=detail&AEProductID=HW_Multum&AEArticleID=hn-2124007#hn-2124007-image

I stumbled across this remedy because a friend of mine who's into herbal remedies gave me some samples. She and I always have trouble keeping warm while at work (we both work in air-conditioned and frigid offices). She told me to try the tea because it would keep me warm!

The first time I sampled the tea, I was floored. I actually had to turn off my space heater, I got so toasty! Because I liked how it kept me warm, she sent me a whole box for Christmas!

Today I accidentally discovered that the tea also helps my stomach! All week I've been feeling gross - weather, stress, hormones, possibly some bad food I shouldn't have eaten during the Super Bowl. Yesterday all I ate for lunch was a pear and some corn chips, drank the rest of the Pepto at home as well as some Mylanta to no avail. The lack of eating was making me more weak on top of the stomach pains. The queasiness continued today when I just drank some Linden tea because the stomach cramping and queasiness was making me feel chilled. Lo and behold - my cramps are now going away. I'm so excited and I'm going to keep this tea on hand at work and at home for whenever my stomach gets crampy :-)

P.S. I did stop taking Flexeril, a muscle relaxant. I wonder if that was also contributing to my all-over body crampiness. I really don't want to go back on it, but we shall see.

Simple things

2011-02-07T12:59:00.000-08:00

I am happy today because my favorite football team, the Green Bay Packers, won the Super Bowl last night! This hasn't happened for 13 years. Last time they played in a Super Bowl, I was pregnant with my son and the Packers lost. What a sad day that was! And to make it worse, my husband was rooting for the Broncos. I was all hormonal and stressed out and about ready to whomp him with something. This year, my son could watch with me as the Packers WON, and my hubby promised to root for Green Bay this time!

Just simple things like this cheer me up sometimes. I've had a difficult month of January and I hope this month will be on a more positive track! Although my left shoulder is starting to revert back to its unhelpful ways, I'm trying to do the best I can. My birthday is also coming up and I hope that helps to cheer me up. Simple things like a friendly e-mail, a card, a cute picture of a kitten (or owl or any cute animal for that matter; I visit icanhascheezburger daily), a small token of appreciation, a kind word - any of those things are invaluable to someone battling chronic conditions.

Walking long distances continues to be a problem. The only time I notice it is going through a large store such as a grocery store. About halfway through the aisles I start getting really dizzy, nauseous and wobbly and feel like the inside of my knee is "squishy." I also feel like my lower back/tailbone area are about ready to give out. Such a strange feeling! Each week it seems to take longer for this feeling to "hit." So I'm hoping with time it will go away completely?

TMI (too much information)?

2011-01-31T08:45:00.000-08:00

I have come to realize that a lot of people think health issues are "TMI" - too much information. People don't want to hear about health problems; they find them scary or unpleasant. I guess this is understandable at some point. . . People don't like thinking about illnesses and ultimately their own mortality. Everyone has something wrong with them (nobody's perfect) and everyone dies someday so what is the big deal? Also I am confused why certain health problems are less "taboo" than others. For example people can sit at the dinnertable and discuss diabetes or cancer treatments, but when you bring up EDS they get all weird and uncomfortable. I wonder why this is? Is it because people are afraid of what they don't understand? I keep trying to educate friends and family members about EDS but I keep running into this issue. They get really quiet, say something embarrassing, or change the subject. Worse yet they will imply that you don't really have EDS and you must be crazy, overstressed or imagining things.

I'm not sure what the solution to this problem is other than to keep trying to educate people.

I keep thinking that we need some famous person to "come out" with EDS. Then it wouldn't be such a stigma attached to it. We could say "You know that famous acress/model/musician/etc. who has that unusual condition? That's what I have." I think that would help out a lot. Roseanne Cash was publicized as having Chiari. But what famous person has EDS??? I am waiting for someone to step up.

Cool EDS site

2011-01-28T06:55:00.000-08:00

http://edsers.com/Home.php

I feel for this lady; she has a lot of the symptoms I have, but way worse :( I'm happy to see more of us getting the word out about EDS.

My first Crohn's flare?

2011-01-25T05:49:00.000-08:00

I am scratching my head here. I just had the most bizarre set of health issues pop up suddenly, and I'm trying to make sense of it all. Then I remembered CROHN'S!

Backing up a bit. . . I had a very stressful December and January. I was in PT for my left shoulder and my left knee had been out of whack for some time. When they found out my meniscus was torn in my knee, and I'd need surgery, that sort of ratcheted up my stress levels even more. Then my grandma got sick and died right before Christmas! I was pretty stressed out then; my knee was getting increasingly worse but I didn't want to miss my grandma's funeral. I managed to attend the funeral OK and was grateful I got to go. It was a whirlwind 8 hr. drive, one day there, and 8 hr. drive returning home on Christmas Eve. Meanwhile I was downright upset that I had sacrificed and worked so hard to go to the funeral, exhausting myself when I could barely walk, but others didn't seem to try that hard to make it. I thought this would be a really special event for the family, to see relatives I hadn't seen for literally 17 years.

Then right after that was my knee surgery. Again I was kind of upset that not many people noticed I had surgery at all - maybe it was the holidays and people were busy, and I don't like being in the spotlight, but I was a bit disappointed. I got one gift bag from my co-workers and that was all. No flowers, cards, nada. This left me a little more disturbed but I tried to ignore it.

Then about a week or so after my surgery I was just barely beginning to hobble around again when we were invited us to a family gathering a good 6 hr. drive away. I was a little perturbed that they expected me to be able to ride in a car for 12 hrs. so soon after surgery. Plus they were going to some museums. I said, "There ain't no way I'll be able to walk through a museum!" (I have better grammar than this, but you get the point :) I would have needed a wheelchair or scooter.) The point of this gathering was to celebrate a birthday and then they sprang a big "SURPRISE WE ARE PREGNANT"! I was so glad I didn't go because that would've been the last straw!! After 9 years of infertility I hate those surprise pregnancy announcements. I try to put on a fake happy face but it's hard for me to be happy when they are oblivious to my ongoing pain, both physically and emotionally.

Last week I started feeling really icky. Nauseous, tired, and my intestines were going crazy. I would get chills, then I'd be burning up, then chills again. I couldn't eat and then I'd be ravenous. I even let the "P" word enter my brain because I was a week late starting my period. Then I finally started thinking about all the stuff I'd been through in the last couple months and even more specifically WHAT I WAS EATING . . . I ate a lot of irritating foods last week! Tomatoes for several days because spaghetti sauce was something easy that would last my family for days. Then feeling too icky to make anything else. We also went out for Mexican food on Tues., and I ate a spicy yet delicious packet of Indian food on Thurs. Some potatoes I had cut the black spots off of. . .some sugary cupcakes. . .The list goes on! I had been eating all the wrong foods for my tummy while still dealing with all the emotional and physical stress of the 2 months before! So I finally figured it out. However I'm not sure I want to visit a gastroenterologist just yet; we still have bills to pay from the MRI, the PT and the surgery on my knee. I'm going to stop eating my bad foods for a few weeks and see what happens. What a wild couple of months this has been.

Drug interaction checker

2011-01-21T06:13:00.000-08:00

I think this is a pretty nifty site: http://www.drugs.com/drug_interactions.php

When I went back for my post-op check, the doc mentioned that he had gotten a "memo" about me. "Oh really?" I said. "Yes," he said - he got a memo that the pain med the nurse had called in for me (Ultram) could interact with my Flexeril and cause seizures. (LOVELY!!)

After that I went into this site and double-checked all the meds I'm on. I don't like being on meds, but at some point I had to accept the fact I'd need to take them for pain control. Luckily enough I found that the only med causing the interactions was Flexeril - a muscle relaxant I don't think works for me anyway. In fact it makes me feel kinda yucky. I think my solution will be to quit taking Flexeril.

This incident kind of scared me to think that such a drug interaction could happen so easily. I thought maybe the pharmacy would let me know, or the doc would call me and tell me to stop taking Ultram. Weird! I also Googled all the vitamins and herbs I'm on. The good news is the rest all seem to be fine.

Now I know why celebrities accidentally overdose on meds. Some celebrities will "doctor shop" and get meds from multiple docs, under multiple aliases from multiple pharmacies. So unsafe :-S At some point, I'll have to request more breakthrough meds from my family doc and then ALL my prescriptions will be with ONE doctor!

Bladder is better!

2011-01-19T07:41:00.000-08:00

Much to my suprise my bladder problems have resolved!! I had been experiencing recurring UTIs and burning. I started taking nettle for my respiratory allergies (dust, smoke pollutants, etc.). Nettle was part of the "D-Hist" supplement I tried, but then I switched to a different brand and took the nettle separately since it was only $6. Then I got tired of paying $25 for D-Mannose (a good treatment but expensive)!! So one day I ran out of D-Mannose and lo and behold! The pain was gone and I've not had any UTIs in nearly a year :) I was suprised to read that the Nettle was helping me with several issues. It's even supposed to treat arthritis.

I think D-Mannose would still be good to have on hand if I do have an actual infection; it was the only thing that made my trip out east tolerable. As long as I kept taking it I was able to enjoy the trip and not run to the bathroom every 20 min.! I would not wish those nasty UTIs on my worst enemy.

Osteo Bi-Flex

2011-01-13T09:17:00.000-08:00

I went back to the doc again today for my follow-up and he said the knee looks good and I don't need therapy unless it continues to hurt after a week or two. Everyday I am able to walk better and better and with less pain. Today the swelling is pretty minimal too. He said the ACL was loose but that might just be normal for me. Ummm YEAH! That's what I'm trying to tell ya! :)

He recommended for the arthritis that I take a supplement called Osteo Bi-Flex. http://www.amazon.com/Osteo-Bi-Flex-Advanced-Triple-Strength/dp/B00180S4RC

Active ingredients are Chondroitin, MSM Complex and other joint factors, such as Collagen and Hyaluronic Acid. A key ingredient is a potent extract of Boswellia serrata called 5-Loxin®, which is 10 times more concentrated than typical Boswellia extracts and helps with joint flare-ups.

I'm going to have to research all these ingredients. But I'm willing to try it. Plus, Walgreens was having a buy-one-get-one free special so I saved over $30 buying two.

Arctic Ease cryotherapy wraps

2011-01-12T06:13:00.001-08:00

Today I am trying something new on my knee - Arctic Ease cryotherapy wraps!

http://www.amazon.com/Arctic-Ease-Cryotherapy-Wrap-Inch/dp/B003R2OPWW/ref=sr_1_1?ie=UTF8&qid=1294841298&sr=8-1

These things are pretty cool. Funny enough, I got samples at a trade show for retirement communities. I have a lot in common with our elderly residents! But all the staff from the different communities liked these samples too. I got several free samples to try.

I've been back to work for 3 days now. I feel pretty good as long as I stay at my desk. Walking around is still extremely slow. However by the end of the day I'm pretty tired and my knee has puffed up to twice its normal size :( That's why I decided to try the wrap today, to see if I could alleviate some of the swelling. The nice part is it makes your skin feel cold without ice and messy drips or leaks! I'm not sure if I'll order more but it is pretty interesting. I wonder what they are made of. I found they also have a site with FAQs:

http://dev.visitthelab.com:8080/arcticease/faq.php

Arthritis

2011-01-10T11:35:00.000-08:00

Well now I need to research another ailment: Arthritis!

Rheumatoid arthritis is a chronic, autoimmune disease. It is an inflammatory type of arthritis which affects the joints. The disease also may have systemic effects, affecting other organs of the body. Symptoms of rheumatoid arthritis include joint pain, joint stiffness, joint inflammation and joint deformity. Fever, malaise, severe fatigue, and morning stiffness lasting more than one hour are also common symptoms associated with rheumatoid arthritis.

About 80 percent of rheumatoid arthritis patients test positive for rheumatoid factor (detected by a blood test). Approximately 20 percent of rheumatoid arthritis patients are classified as having "seronegative rheumatoid arthritis" because they lack rheumatoid factor.

With rheumatoid arthritis, there is a symmetrical pattern of affected joints. For example, both knees of a patient are usually affected rather than one knee.

- From http://arthritis.about.com/od/rheumatoidarthritis/ss/pictures_photos.htm

What I suspect is that my hypermobility has made me more prone to getting arthritis as well. The photo the doc printed off showed the inside of the joint to be fuzzy - like a fuzzy white blanket. He trimmed that out, but I'm sure it will grow right back and is growing in all my other joints!!! I will be asking him about this on Thurs. when I got back for a checkup. I'm back to my normal routine today, just walking extremely slow!

Knee surgery: Success! I think.

2011-01-05T08:29:00.001-08:00

Well I made it through knee surgery just fine! The procedure itself was a piece of cake. . . I was not nervous at all, and they wheeled me into the surgery room and next thing I remember I was back in recovery!! Pain was minimal because they gave me a "femoral block" I think it was called. I was sooo dizzy at first but they wanted me to be up on my knee right away! I hobbled into the car and my hubby drove me home and got me propped up on a recliner with ice on my knee. I was so amazed that they wanted me to WALK!

The doc. found a piece of floating cartilage which was removed and also my ACL was too loose and looked like it had been previously torn. Also I have the beginnings of arthritis forming :(( I'll have to do some research on that. On the pictures he gave me, the arthritis looks like fuzzy patches on the joint! Very interesting! So when I go back, I'll need to ask him what to do about all that. I'd always suspected I was starting to get arthritis but sadly this is confirmation.

Pain has not been bad at all except the Tylenol with Codeine made me incredibly nauseous. They also gave me something called "Meloxicam" or "Mobic," apparently some type of NSAID. I'm calling the doc. and asking him for something different. Vicodin causes me to throw up, Percocet makes me itch, and Darvocet is no longer available. I wonder what they'll give me??

Just resting up and hopefully I can hobble on into work on Monday :)

Ankle swelling

2010-12-17T08:22:00.001-08:00

Not sure why, but my ankle (left, same side as the bum knee) has decided to swell up. I'm not sure if this is because the knee is injured or if the knee being crooked is making the ankle itself more unstable? It's about 30% larger than normal. This ankle pops a lot also, even when it's not swollen. So hmmmmm.

Still trying to "tough it out" until my surgery in Jan. I'm wearing my Reggie Bush brace instead of my hinged brace. The hinged brace doesn't seem to be supportive enough anymore. I can feel my knee getting more twisted up when I wear the hinged brace :( At least the smaller stetchy brace is not quite as noticeable! It is VERY supportive and just sort of sucks everything in tight!

Shoulder PT is progressing well. Pain has been reduced quite a bit! I asked the PT lady about crutches because I'm concerned crutches will aggravate my shoulders. She said that I should only be on crutches about 3-4 days. Alleluia!! I had horrible visions of me hobbling into work with a backpack and crutches. I also asked her if forearm crutches would be better and she didn't think it would matter. WE SHALL SEE! I will have family members at home with me that whole week, so hopefully I won't have to move around a whole lot.

To top it off, my grandmother is sick and could pass at anytime. I'm a little stressed out about that, not knowing if/when. She had a very full, active, happy life so after 98 years I don't blame her if she wants to go "home" to be with grandpa again. Still it will be sad. I did get to talk to her on Thanksgiving so that was good.

Joint Motion and the Adult with EDS

2010-12-10T12:44:00.001-08:00

I thought this article was really insightful, and explains why my "capsules" and "menisci" are not holding my joints together! Interesting!

http://www.ednf.org/index.php?option=com_content&task=view&id=1323&Itemid=88889208

The capsule is a very important feature in constraining motion. It has been estimated that about 40% to 50% of joint motion is constrained by the capsule of the joint. Capsules have very few elastic fibers and are very tight fibrous tissues. If a capsule is torn because of injury, the capsule will no longer have the same integrity. The loss of fiber strength may thereafter allow more motion than before the trauma and so the joint becomes "hypermobile".

EDS is a group of disorders where the physical properties of this capsule are abnormal and diffuse stretching occurs during routine use of the joints. The capsule does not have much recoil, so if the patient repeatedly stretches the capsule, eventually the distention will not be reversible. However, in contrast to the post-traumatic joints, the resulting hypermobility will be widespread and symmetric since the inherited defect is throughout. These concerns apply also to the intraarticular fibrocartilage meniscus found in some joints which acts to disperse forces and to control motion of the bone ends. Tearing or distortion of these tissues may result in permanently hypermobile or unstable joints.

Pity

2010-12-09T06:43:00.000-08:00

OK when the doc announced I needed another surgery, he expressed extreme dismay and said, "What is going on with your body? You're set to have more surgeries than ME!" I'd guess he's in his mid 40s. I don't really feel that way at all - I know I have EDS/Chiari and that's why my body tends to fall apart more quickly than others. I'm OK with that, I have accepted that and have decided to just do the best I can and take one day at a time. I also educate myself each time an issue pops up so I can make sense of it all.

I really hate pity. Yes some people feel sorry for me, but that's just because they have not come to grips with the situation like I have.

A lot of people are very shallow and focused on physical things. Having stuff, being in control of things, having certain social status, etc. I'm not really that way. There are a few physical items I would be upset to lose, but in the end, you can't take it with you! Physical things can be replaced and the physical body is not meant to last forever.

In addition I think the attitude of pity puts you into a "victim" role and I really can't stand that. It puts you in the position of being helpless. People are not helpless, they are just taught to feel that way. Then when anything "bad" happens they feel someone/something is attacking them and there's nothing they can do about it. I feel this attitude really contributes to illnesses and I wish more of us could realize we are in control of our destiny! Just think of all the people who came from nowhere, had nothing, or had a seemingly insurmountable obstacle, but ended up rich or famous or did something amazing. Did they sit around feeling sorry for themselves? Maybe a little while, but then they dusted themselves off and carried on toward their goal!

I was a little sad for a couple days after learning about my knee but now I'm trying to see the silver lining. I get to learn, I get a week or more off work to rest and relax, and maybe I can help educate and support some other people in the process. Who knows? I know my cats and dog will be ecstatic to spend some quality time with mama!

The verdict: Torn meniscus

2010-12-09T06:22:00.000-08:00

Well finally got the MRI results and it makes me feel happy/relieved/sad/scared/frustrated/stressed out/vindicated/_______ (fill in the blank). The doc said I have a tear in the lateral meniscus of my left knee.

A meniscus tear is a common knee injury. The meniscus is a rubbery, C-shaped disc that cushions your knee. Each knee has two menisci (plural of meniscus)-one at the outer edge of the knee and one at the inner edge. The menisci keep your knee steady by balancing your weight across the knee. A torn meniscus can prevent your knee from working right.

A meniscus tear is usually caused by twisting or turning quickly, often with the foot planted while the knee is bent. These tears can occur when you lift something heavy or play sports. As you get older, your meniscus gets worn. This can make it tear more easily.

- From http://www.webmd.com/a-to-z-guides/meniscus-tear-topic-overview

I didn't want to be on crutches for the holidays, so I took the first available surgery date in 2011. I'll be having my surgery right after all the festivities are over. From the looks of it, recovery time depends a lot on what type of tear you have. However I heard most people with desk jobs can be back in a week! So, I'm planning on being back in one week unless the doctor finds my problem is worse and/or I'm having some issues. Gotta think positive!

Are you ready for some FOOTBALL???

2010-12-03T07:56:00.000-08:00

Speaking of Reggie Bush - I have been pondering why I love football. In school I was TERRIBLE at sports. I understood the strategies and all, but I could never get my upper body to produce enough power to do things like spike or serve a volleyball, or swing a tennis racket. Forget about trying to push my way through a crowd of defenders. I can't even count the sad times in gym, growing up, and being last picked for teams, being forced to attend basketball and volleyball camps because my parents thought it would persuade me to like sports better, always losing and getting the red dodge ball smacked into me. I was picked on and teased constantly because my EDS body just was unable to keep up. The only things I could do somewhat well were gymnastics, running and strangely, flag football!

My dad used to watch football on TV every weekend and I came to associate the buzz of a football game with Sunday afternoon naps. I never really understood what all those guys were doing running around and slamming into each other on the field. All I knew was we rooted for the Green Bay Packers. I was in 5th grade when the Chicago Bears played in the Super Bowl and everyone was doing the Super Bowl Shuffle. I still didn't have a clue what was going on though. I guess because I was a girl, no one thought it was necessary for me to know.

In high school the fog was lifted; for gym class we had to learn football basics - but since we were girls AND our school had no football team, we used flags instead of tackling. In that game I finally experienced the exhilaration of winning. I threw the ball to one of my teammates who had "gotten it" also and she ran for the touchdown! We jumped up and down screaming in victory and she gave me a high five! I will never forget that moment of joy. We won because we had mastered the strategy of the game - not because we were the best athletes!

That small moment of joy in gym was a magical moment - I will never forget the look of joy on my classmate's face and the feeling of "Wow - I did it!" and the other classmates in shock that this skinny little girl had finally beaten them!

After that I really started to understand the football games on TV. I watched and soaked up all the information and became a dedicated fan of The Packers and The Colts! (Hey, they're in separate divisions :) ) To me, football is like a gigantic complicated game of "Rock, Paper, Scissors." I love the psychology they try to use, the "trick" plays, and how attitude can make or break the game. Although my body isn't strong enough to play like them, maybe I can live vicariously through them by watching every Sunday afternoon. I'm not as obsessed as some people are; I don't have all the players and stats memorized but I do enjoy watching - to me, it is the most exciting game in the world!

Here you can see how awesome Reggie Bush can play while wearing "his" knee brace after his 2007 PCL injury - ha, probably not :)

Photo source

Knee MRI: Complete!

2010-12-03T07:32:00.000-08:00

Well I survived my first-ever knee MRI! I was not too worried about it since I've had MRIs of the shoulder, head and spine before. Basically they wheel you into this tiny coffin-like space (good thing I'm not claustrophobic). They strapped my leg down and stuffed styrofoam wedges around it so my knee would stay completely still. Then the MRI machine made a bunch of weird knocking, clicking and beeping noises. The first MRI I had, I found the weird noises unsettling. But now I'm used to them and expect it :)

All was fine and dandy until halfway through the scan, my entire leg went numb. Something about how it was propped up and strapped down was cutting off the nerves! I just kept my leg still and prayed for the scan to end. When I got back up it was a bit difficult to walk. But, no big deal. I was able to hobble back to my car well enough. The staff in the hospital were really nice and caring.

Now I have to live with the wobbly knee until Tuesday, when I return to the doc. who will tell me what is going on. If I had to describe it, I would say that the inside of my knee feels like gumby. If I try to go up stairs or hills, it feels like something inside my knee is s---t---r---e---t---c---h---i---n---g! If sort of feels if I don't back off, my entire knee will pop apart. I don't know if that is possible, but that is totally what it feels like.

So while on a trip to Kentucky, I found this cool knee brace supposedly endorsed by Reggie Bush, NFL running back for the New Orleans Saints. Actually I bought it because it was only $3.99 and I thought it might be a nice change :) It is basically a super-stretchy "tube" of fabric. When I wear it, it feels like my knee has springs in it. Everytime I bend the knee, the stretchiness "springs" the leg straight again. I don't know if this is the right kind of brace for my injury or not. But my body seems to like variety; too much of one thing starts to lose its effectiveness after awhile. Plus, I can wear it under tight(er) pants than the hinged one. The downer is, it tends to really irritate the skin on the back of my leg.

Knee MRI next week!

2010-11-23T11:50:00.000-08:00

In other news, I am getting myself a KNEE MRI next week! Yahoo! Just what I always wanted!!!

This is interesting because I was expecting him to MRI my shoulder. However since I've only had a few weeks therapy he thinks it's too soon to do anything for it, plus the pain seems to be muscular. So I will continue the taping, the stretching and the lidocaine ultrasounds for awhile longer.

The knee is still feeling pretty icky; if I take my brace off I start getting queasy and it feels like things are squishing around in my knee. I can feel weird little twinges and tight spots, and then the horrible pain sets in. So I am continuing the knee brace until we know more what's going on!

Darvocet/propoxyphene/Darvon

2010-11-23T11:04:00.000-08:00

Well this is really strange. Turns out the pain med. my doc. has been giving me for the past several years could kill me.

FDA Delays May Have Cost Lives

No More Darvon for U.S. Markets

Since I've had heart rhythm issues in the past, I decided to look up what KIND of heart rhythm this could cause. I found this:

http://www.cardiovascularbusiness.com/index.php?option=com_articles&view=article&id=25271&division=cvb"the drug caused significant changes to the electrical activity of the heart—prolonged PR interval, widened QRS complex and prolonged QT interval."

I looked this up also, and basically what it is saying is it slows the entire heartbeat down. If my heart beats too fast normally, would this necessarily be a bad thing? Hmmm. I have about half a bottle left and I only take one pill a week tops, only on my "bad days." I'm not sure how much I should worry about this. Also, should I be worrying about the other meds. I am on?? :-S

And more tape. . .

2010-11-16T11:55:00.001-08:00

My shoulder hurt so bad yesterday without the tape. It felt like someone was stabbing me in the back of the shoulder :( As soon as I got home, I put an ice pack on and it calmed down considerably. However it was so bad I could barely use my left arm, even with the ice. Today I woke up and was able to use it again, but I still don't want to pick up heavy things or open doors. If I see a door with a handicapped automatic door opener button, I use that because opening heavy outside doors is just too difficult! PULLING open is the hardest. To PUSH I can use my bodyweight to help push with my "good arm." Pulling is agony. I might have to start using the front door at work because the back door for employees is one of those heavy metal ones! I'll feel sort of strange, but won't be the first :)

Today I got another PT lady and she taped me a slightly different way. Since my shoulder "rebounded" from the first tape, she made it a bit less tight this time. She had me do a few exercises which she explained were to help my shoulderblade stop "winging". I know all about winging scapula! If only I could actually take flight, I wouldn't mind it so much :)

Kinesio Tape

2010-11-15T07:29:00.000-08:00

Last week at PT I got my first experience with Kinesio Tape!

http://www.kinesiotaping.com/

I would like to shake the hand of this guy, Mr. Kenzo Kase, who invented this stuff. I had a virtually pain-free weekend!! Of course as soon as it started itching and I took it off, the shoulder started spasming again with a vengeance :(

The PT lady taped the back of my shoulder, from the top to the bottom of my shoulder blade. It felt like the tape was lifting my shoulder up and back into its proper position! My shoulder is so hypermobile and wobbly, it continues to want to round/hunch forward which causes the muscles in front to shorten and muscles in back to get stretched out. They put it on Thu. and told me to take it off Sat. or Sun. By Sunday it was starting to itch, so hubby helped me pull it off. It is EXTREMELY sticky and somewhat difficult to remove and left some pink marks on my EDS skin, but it was well worth it. Tue. they might tape it up again - oh I hope so!

PT for left shoulder

2010-11-10T10:53:00.000-08:00

Well, I guess my left shoulder was feeling jealous about all the attention my right shoulder got last year. So it has decided to sublux and spasm more! I finally made it to PT, and the lady poked around on my shoulder and measured my ROM. Seems my ROM is great - it's just that the shoulder is too "loose" so actually - too much ROM!

She also said the shoulder contained a lot of "trigger points" and perhaps something was going on with the bursa sac. She did some ultrasound on it which felt very nice and relaxing. Then, she told me I should NOT be lifting or pushing or putting all my bodyweight on that arm. So that explains why I had to drop out of yoga!

I'm supposed to start regular PT as soon as they can fit me into the schedule. The GOOD NEWS is they don't want me doing any stretching exercises until the shoulder calms down. That's the crappy part of PT but I guess this time they are taking a different approach.

Airplane rides - more success this time

2010-11-10T10:36:00.000-08:00

I took another trip last week - to sunny L.A.! Amazingly, I did much better than the last trip I took. First of all I knew more what I was doing at the airport. Secondly, I brought my fuzzy warm neck pillow and kept that on during the entire flights. Thirdly, I got these special earplugs called "EarPlanes."

http://www.amazon.com/EarPlanes-Pressure-Regulating-Earplugs-Pairs/dp/B001HTWL8C/ref=sr_1_3?ie=UTF8&qid=1289414301&sr=8-3

These things rock! I highly recommend. You put them in before takeoff and also an hour before descent. For the short connector flights I just left them in the whole time. I could feel pressure on my eardrums but it seemed the EarPlanes were softening the changes. I did NOT experience the extreme head pain I had last time! On the last trip, I had severe head pain for DAYS! I'm not sure if it was the neck pillow or the EarPlanes, but between the 2, my pain was minimal. I only had one migraine after getting there and then - nada! I was impressed.

New knee brace

2010-10-27T08:05:00.000-07:00

Well since my knee has gone "wonky", my massage lady recommended I get a hinged knee brace. I didn't know there were knee braces with hinges!

http://www.amazon.com/gp/product/B000US9HL0/ref=pd_lpo_k2_dp_sr_3?pf_rd_p=486539851&pf_rd_s=lpo-top-stripe-1&pf_rd_t=201&pf_rd_i=B00267SFKM&pf_rd_m=ATVPDKIKX0DER&pf_rd_r=0NGPG723P0TGXYBS48WM

This thing has been helping me quite a lot. She explained that the knee is NOT supposed to move side-to-side at all, it's only supposed to move your lower leg up and down. One direction only! That is why I need the hinges; apparently when I twisted it, I moved it sideways which is not what it is made to do. The hinges on the knee brace allow my knee to still move in a healthy way, but stop me from moving it sideways. This has really been helping me walk and continue my life as usual! Plus, I'll be doing a LOT of walking next week when I'm out of town. So, thumbs up for this knee brace!

D'oh!

2010-10-26T10:45:00.000-07:00

I finally went to the orthopedic surgeon who fixed my right shoulder. After examining my left shoulder he proclaimed, "Yep - looks like it's doing the same thing as the right shoulder was." He said we'd pretty much be on the same course as last year with the other shoulder :( I already suspected this, but it wasn't great to hear him say it. Hooooray EDS!!! Looks like shoulder surgery might be on the calendar for 2011. Hey at least 2010 was a year off.

I am starting PT in 2 weeks since I will be away next week. Then, in a month I get to go back and tell him whether the PT has helped. Otherwise, I'll get another MRI and then surgery after that.

Since I was there, I asked him about my knee also. He thinks it's torn cartilage, since the movement seems to be OK. It didn't hurt a lot when he was looking at it, but a couple hours later - owwie! This is good because sometimes torn cartilage can heal on its own! The pain seems to be way less, but I'm still not overly confident walking on it.

Anatomy of knee joint

2010-10-19T06:17:00.001-07:00

Time to get to know the knee joint so I can take better care of it.

Introduction to knee joint anatomy The knee joint is the largest joint in the body, consisting of 4 bones and an extensive network of ligaments and muscles. Injuries to the knee joint are amongst the most common in sporting activities and understanding the anatomy of the joint is fundamental in understanding any subsequent pathology.

Bones of the knee joint
The knee is made up of four main bones- the femur (thigh bone), the tibia (shin bone), fibula (outer shin bone) and patella (kneecap). The main movements of the knee joint occur between the femur, patella and tibia. Each are covered in articular cartilage which is an extremely hard, smooth substance designed to decrease the frictional forces as movement occurs between the bones. The patella lies in an indentation at the lower end of the femur known as the intercondylar groove. At the outer surface of the tibia lies the fibula, a long thin bone that travels right down to the ankle joint.

The knee joint capsuleThe joint capsule is a thick ligamentous structure that surrounds the entire knee. Inside this capsule is a specialized membrane known as the synovial membrane which provides nourishment to all the surrounding structures. Other structures include the infrapatellar fat pad and bursa which function as cushions to exterior forces on the knee. The capsule itself is strengthened by the surrounding ligaments.

- From http://www.sportsinjuryclinic.net/cybertherapist/kneeanatomy.php

A funny bit of EDS humor. My dad is likely who I inherited all this from although he has not been diagnosed with EDS yet - he avoids doctors like the plague. But he told me, "Once your knees start hurting, you pretty much forget all your other pains." Gee thanks dad! :)

Twisted knee!

2010-10-19T05:32:00.000-07:00

Living with EDS is just an adventure, everyday! You never know which body part will freak out next! The latest for me was my left knee. I've noticed this knee "popping" a lot after my shower. It seems that the muscles in my leg are getting tight - both upper and lower leg area. So I just figured it was the knee popping back into place. There was one Sunday about a year ago that it hurt really bad and I had trouble walking. But I just applied some Reiki to it, it popped back in and didn't hurt anymore, so I sort of forgot about it.

Fast forward to 3 days ago... I was in my livingroom trying to open the blinds in the front window. The chains and cords had been tangled up together and it literally would not budge. My legs were wedged between the edge of the sofa and the small side table next to the sofa, and I was twisting my body to the left yanking on the blind cords and trying to untangle them. Suddenly I felt a little twist in my left knee followed by a sharp pain! Then I hobbled around for the rest of the evening. Next morning I was still hobbling and had to hang on to the shopping cart sort of like an elderly person uses a walker! I bought a nice ACE bandage and wrapped it up which helped it feel a lot more stable but I was still hobbling around. Sunday I noticed it was slightly swollen ABOVE the kneecap! The soreness and hobbling come and go - when I rest it gets better, when I elevate my leg or try to go up stairs it gets worse. The acupuncturist was able to help it a lot yesterday. He zapped my ears, then put needles in my ear AND my knee! By the end of the session I was able to lift my leg again without pain! I still hobbled that day, but this morning I woke up and the pain was MUCH improved :) So does this mean my "illness" has been chased into my leg and will continue going down until it gets to my toes???!

I finally did it!

2010-10-12T09:32:00.001-07:00

Finally called the doc. who did my right shoulder surgery. I want him to check out the left shoulder and what it's doing. Something is really not right with that shoulder and I'm not sure what to do :( If I lift my arm up and back, it slides in and out of joint. From what I've read, the shoulder is a very shallow joint (not like a ball and socket, more of a slightly curved area) so it can move out of place pretty easily. It doesn't pop all the way out (dislocate), it just sliiiiiides slightly one way, then the other. This causes the muscles to spasm like you would not believe! I'm anxious to hear what he'll say about it!!

The right shoulder doesn't slide out of joint anymore, since he tightened it. But it does pop in the back of my shoulder. He told me that was normal and it would take awhile for the shoulder to get used to its "new" position. I have exactly 2 weeks to wait and find out. . .

I found this cool article on the shoulder joint, how it works, and what the "clunks" mean: http://www.kettering.edu/visitors/storydetail.jsp?storynum=322

Special events not so special

2010-10-11T12:06:00.000-07:00

"Special events" such as parties, weddings, showers, trips, vacations, conferences - anything involving travel and extra stress. They kick my butt! The past 2 weekends were full of 'em for some family events. I'm really happy for those family members, and I tried to enjoy the events as much as possible but. . .I'm "whooped" now. You'd think I ran a marathon, that's how tired I am. Then the rest of the week I will drag my sorry butt into work, feeling like crud. Oh well, that's life. . .If it gets too bad I can use some PTO time. I hope it'll pass. I get sick of having to take PTO all the time.

I consider any special event a success if I a.) do not have a migraine and b.) have a very small bit of fun :) This time I did have a migraine but not until the very end of the event and I was able to sleep it off. Fun was had. Success!

A funny: food additives

2010-09-29T12:35:00.000-07:00

'Cause it's true :)

- From http://www.fedupwithfoodadditives.info/

Leg going numb

2010-09-28T10:32:00.001-07:00

OK this is getting a bit scary. My right leg started going numb while I was on a hayride Saturday :( We also walked through 2 miles of corn maze in the dark. By the time I got on the hay ride, my legs were freaking out. I was cold, tired and then ended up sitting with one half of me on one hay bale, and the other half on the adjoining hay bale. Then a tractor pulled us around for about 20 min. My leg started going numb and it hasn't calmed down much since. All the muscles in my right leg are hard as rocks. What this is from, I have no clue! Lord have mercy! I might just have to get one of those motorized scooters to annoy my hubby with! He hates them - says they are always "in his way" when he goes to the store. Grrrr.

The proverbial onion

2010-09-23T07:06:00.000-07:00

This week has been horrible, with huge weather shifts, horrible migraines, shoulder pain and hip instabilitly. I was FINALLY able to get back to the acupuncturist. He'd been out of town for 2+ weeks, so I was left to continue on my own and see how I did.

The left shoulder was incredibly messed up. Worst pain it's ever had! I was really close to calling the orthopedic surgeon again and saying "Look mister, you fixed the right shoulder but now the left one's toast!" But I decided to wait and see how acupuncture did.

Acupuncturist could see what my shoulder was doing. It was in RARE FORM! The right shoulder wasn't bad, and the tension in the back of my head was pretty non-existant. My sacrum was still wonky. He told me that the sacrum problem may have been there all along, but I just didn't notice it because of the pain in my upper body! He said my problems were like an onion. Peel off one layer (neck tension) and the next layers emerge. Maybe at the very center of the onion will be the cure?! EDS can't be cured but if I could at least train my body to line up better, that would be great.

It makes me wonder if I might have tethered cord. Here are some sites that explain that:

http://www.conquerchiari.org/subs%20only/volume%204/issue%204(9)/occult%20tcs%204(9).asp

http://www.worldlingo.com/ma/enwiki/en/Tethered_spinal_cord_syndrome/1

http://www.medscape.com/viewarticle/405672_6

I definitely notice there is scoliosis going on when it flares. Hmmm the next mysterious onion layer...

Stinging Nettle

2010-09-15T07:06:00.001-07:00

Right now, I'm taking two herbs: Vitex/Chasteberry to decrease estrogen levels, and Stinging Nettle to help with allergies.

Stinging nettle plant (Urtica dioica) is an herb with stinging hairs found in the United States mostly in forests, mountains, weedy, undisturbed areas and roadsides. Extracts of the stinging nettle roots have been used in Germany for prostate health, joint disorders and respiratory health...

Stinging nettle extract shows in vitro inhibition of several key inflammatory events that cause the symptoms of seasonal allergies. These include the antagonist and negative agonist activity against the Histamine-1 (H(1)) receptor and the inhibition of mast cell tryptase preventing degranulation and release of a host of pro-inflammatory mediators that cause the symptoms of hay fevers. The stinging nettle extract also inhibits prostaglandin formation through inhibition of Cyclooxygenase-1 (COX-1), Cyclooxygenase-2 (COX-2), and Hematopoietic Prostaglandin D(2) synthase (HPGDS), central enzymes in pro-inflammatory pathways. These results provide for the first time, a mechanistic understanding of the role of stinging nettle extracts in reducing allergic and other inflammatory responses in vitro.

- From http://www.raysahelian.com/stingingnettle.html

Another site had this interesting tidbit:

The stinging nettle was referred to by Shakespeare in the play Henry IV part 1, where the character Hotspur asks that "out of this nettle, danger, we grasp this flower, safety." The common figure of speech "to grasp the nettle" has its origin in this quotation and means to face up to or take on a known problem.

- From http://www.vortexhealth.net/stinging_nettle.html

Other benefits they listed: helps with UTIs, kidney function, detoxification, arthritis, hormone balance, etc. Basically it's supposed to help with just about all the things I need :) Plus it was only $7 for a bottle that will last months! I will continue taking it and see what happens.

Getting comfy at night

2010-09-13T05:47:00.000-07:00

Just another day in the life of an EDSer. Everyone looks at me wondering what's wrong with me. Why do I have those dark circles under my eyes? I'm young, I look healthy on the outside. Little do they know I'm in pain 24/7, take more pills than they can imagaine, and sleep is hard to come by. Lately I've had a lot more energy, but then I end up staying up past 11:30 and when I need to get up by 6:30, that is not so cool. It takes me FOREVER to find a comfy spot where I can relax and drift off. Lately, the pink recliner in the livingroom has been my best friend. I can tip it back as far as it can go, which allows me to stretch out with my head still slightly elevated. Then I can lay on my side without squashing my shoulder in half and smashing my ribcage (Smashing the ribcage makes my heart flip-flop in my chest). Also I can wedge my hips into a comfy spot where they're not wobbling all over the place. I can prop a pillow between my legs for hip support and a pillow between my arms for shoulder support. Finally, I can put an ice pack on the sore spot on the back of my head and pray that the cats, dog and frogs don't wake me up before I can get some Z's. I must look pretty ridiculous.

This is one time I actually envy Homer Simpson. It must be nice to be able to sleep anytime, anywhere :)

SI Joint

2010-09-02T06:27:00.000-07:00

Yep I've finally figured out what is causing my hips and lower back/legs to feel so incredibly strange! I believe it is my Sacroiliac Joint! Here is a nifty video:

http://video.about.com/backandneck/Sacroiliac-Joint-Syndrome.htm

That is totally what my hips feel like - that they are NOT moving correctly when I walk, and when I get up sometimes I'll feel the sacrum "pop"! My entire lower back is extremely stiff and locked up and my legs feel like I need to move them constantly to get rid of the tight prickly feelings. Here are a few other sites that explain the SI joint dysfunction:

http://www.getprolo.com/sacroiliac_joint_dysfunction.htm

http://www.orthogate.org/patient-education/lumbar-spine/sacroiliac-joint-dysfunction.html

http://www.lower-back-pain-answers.com/sacroiliac-joint-dysfunction.html

From the last link, my symptoms seem to be more on the hyPO mobile side. My theory is that my EDS has caused that joint to be loose (and yes I have given birth once). Actually my SI joint seems to act up more around hormone shifts. Then, to stabilize the area my body has tried to tighten up all the tissue. I will be discussing this more with my massage professional. It is literally a pain in the butt :) :) :)

Hip weirdness

2010-09-01T06:10:00.000-07:00

I just need to vent - my hips are falling apart at the ripe old age of 35 -ARRRGGGHHH!!! So I had my fourth session of acupuncture yesterday. I could tell the doc. was about ready to give me the ol' heave ho. As in "You're not THAT sick, in fact you're quite young and healthy so we think you are just exaggerating. EDS? Chiari? That's what you think - have a nice life!!" This was making me very nervous because I had really improved with my first few treatments.

Basically first session he focused on my right ear briefly, second and third he focused on my left ear working on loosening up the left shoulder and briefly worked on my hips. Well apparently my hips did not like that. This week they went HAYWIRE! I literally felt I could not walk or stand. I was nauseous and weak. It felt to my untrained hands that there was a big lump on the right side of my sacrum. It felt WRONG, but I didn't know what it was doing exactly except that it was not straight? Or shifted out of place?

I came into acupuncture all pale and sickly looking. He asked me how I was doing and I said "Terrible!" In a way I was secretly relieved he could see now what I was dealing with. I wasn't just making stuff up. I really DO have bad days. He bent my legs and said that they should be much more flexible that this, especially for a loose-jointed person. He felt the sacrum area and made some kind of sympathetic noise which to me would be translated: "Holy #$&@?!" Of course he had to be more polite than that. He did some treatment on my sacrum I don't know the name for, then zapped my ears some more. I did feel quite a bit of shifting and energy action. The rest of the day it was better. I had sort of a stressful day and it started to flare up again by the end of the day however.

If I had to describe this feeling I would say it feels like my sacrum is unstable. It literally feels like my legs are not attached to my body. I'll have to do some more research on this.

Awesome EDS article

2010-08-26T07:32:00.000-07:00

http://www.thefightlikeagirlclub.com/2010/07/eds-ehlers-danlos-syndrome-my-story/

I looooove this article! I especially like this part:

I now get that life is too short to put up with toxic people and toxic situations. Negativity spreads like wildfire and it can really affect your health. One of my favorite quotes is “When you’re up, your friends know who you are. When you’re down, you know who your friends are.” This can not be anymore true then when you are sick with a debilitating disease.

This really describes my mindset also. Negativity is really poisonous to people with chronic health conditions and must be avoided at all costs!

Product review - ALCiS pain cream

2010-08-23T05:26:00.001-07:00

(First a disclaimer - ALCiS is not paying me to say this. All I received from them is a small sample of their product. I am neither a scientist nor a health care professional, just a consumer :))

I am really impressed with this pain cream! http://www.alcis.com/

We received free samples at the EDNF Conference last month. We received several different samples, so I didn't try it right away. I took it to work a couple weeks later and tried it on my shoulder. WOW!!! My shoulder muscles immediately relaxed and felt warm and cozy! I was quite surprised it worked so well. I've never tried BenGay or Aspercreme or any type of topical pain ointment as I didn't want to smell like an old person. Plus, I have co-workers with very sensitive noses and I don't want them to have one more reason to think I'm odd. This ALCiS smells really nice - like a high quality moisturizer. It feels like a moisturizer too! Leaves your skin soft and smelling nice. Now, my only problem is finding it. Our local Walgreen's and Meijer stores did not have it. I need to check at CVS and Amazon.com. My little sample tube is almost empty :(

Celiac Disease and Autoimmune Thyroid Disease

2010-08-20T07:59:00.000-07:00

Very informative article: http://www.clinmedres.org/cgi/reprint/5/3/184

Ear acupuncture

2010-08-12T13:00:00.000-07:00

Well this week I got my first taste of "ear acupuncture." I'm not sure if my treatments will always be given by ear (played by ear - hee hee). But the few minutes I got were pretty impressive!

What is ear acupuncture?
Ear acupuncture, also known as auricular therapy, is based on the principles of Traditional Chinese Medicine. Auricular therapy is widely used for many conditions, including addiction treatment, mood disorders, obesity, pain, and other conditions. This medical system emphasizes a holistic approach to medicine, an approach that treats the whole person. The acupuncture points found on the ear help to regulate the body's internal organs, structures, and functions.

- From http://www.acupuncture.com/education/tcmbasics/earacu.htm

Basically we went over all the issues I was having. Then, he put this little electrical stimulator on my ear. After awhile I could feel some of my neck muscles loosening. And the next day my neck was still loose! He also put "ear seeds" on 2 points on my ear. He told me to massage the seeds every hour, and it would help the treatment last longer. I'm telling ya it worked even better than anything I've ever tried. My insurance doesn't cover it but I don't CARE - I just want to feel better!

The other amazing thing was he knew what Chiari was and said he even had some patients with syringomyelia!! He said that the Chiari is probably what is causing the spasms. I STARED wide-eyed at him and said, "Do you think so?" And he said "Yeah I really think so." It was one of those wonderful moments I'll never forget. There are lots of other doctor moments I'd like to forget, but not this one. I can't wait until my next treatment which will be much longer!! The right side of my neck is still doing GREAT. Left side is another story but I'll save that for next week!!!

An embarrassing condition - Vulvodynia

2010-08-06T08:24:00.000-07:00

OK this post is for the ladies - and I'll try to make it less embarrassing. But it is a real problem I am dealing with, called Vulvodynia.

The word "vulvodynia" means "painful vulva." Your vulva consists of the pad of fatty tissue at the base of your abdomen (mons pubis), the labia, the clitoris and the opening of your vagina.

The main vulvodynia symptom is pain in your genital area, which can be characterized by:

■Burning
■Soreness
■Itching
■Stinging
■Rawness
■Painful intercourse (dyspareunia)
■Throbbing

The pain you experience may be constant or intermittent and can last for months or even years, but it can vanish as suddenly as it started. A similar condition, vulvar vestibulitis, may cause pain only when pressure is applied to the area surrounding the entrance to your vagina.

Vulvar tissue may look minimally inflamed or swollen. More often, your vulva appears normal.

- From http://www.mayoclinic.com/health/vulvodynia/DS00159/DSECTION=symptoms

I've had sensitive skin "down there" for years, but I didn't really know the name for it until now. When I have a flare, it is very uncomfortable and almost drives me insane. I try lukewarm baths, aloe, ice packs and try to wear loose clothing. I think certain things in my diet are irritating me as well, but I'm not sure what. The D-Mannose supplements help A LOT; when the irritation goes up into my bladder it really calms down the burny feeling. I've noticed that if I do not do these things to calm it down, it will progress into a UTI :( I've had enough of those and I am afraid they will send me to a specialist if I get any more in the near future :( But, this time I was able to control it with the things I just mentioned, and I am feeling better. Thank God.

Junk food linked to intestinal disease and allergies--study | The Money Times

2010-08-04T11:55:00.000-07:00

Junk food linked to intestinal disease and allergies--study | The Money Times

Acupuncture next week!

2010-08-03T06:02:00.000-07:00

I am so excited about trying acupuncture. I've not really investigated the realm of Chinese medicine; however I learned a lot about it at the EDNF conference last month. I figure my options at this point are: treat each individual body part separately (worst pain areas first) OR treat the whole body with acupuncture :) The lady who gave our talk was really inspiring to me. She has EDS and had been very sick, but she tried acupuncture as a "last resort" and today she is very healthy! She was just a bundle of energy. It made me really excited that maybe it could work for me too.

Acupuncture and Fibromyalgia
Chinese medicine views fibromyalgia as a condition resulting from general weakness of the liver, kidney, spleen and heart, caused by emotional stress, over strain, lack of adequate sleep and nutrition, and disturbed body rhythm - in other words, the body is out of "sync."

A Traditional Chinese Medicine practitioner completes a full assessment of a patient in order to accurately determine what imbalances are present. There are a number of different patterns that we see frequently with FMS and treatment should be tailored to each patient's pattern. Acupuncture and Chinese herbal medicine can help control pain, increase energy and improve sleep and other symptoms. Fibromyalgia symptoms are greatly influenced by stress, amount of activity, and environment.

From http://www.acupuncture.com/conditions/fibromyalc.htm

Interesting this site mentions to avoid all the things I'm already avoiding like caffeine, alcohol, and junk food. However they also mention tomatoes, eggplants and peppers. I do feel pretty yucky when I eat eggplant, and I try to limit tomatoes and peppers. But I really like 'em :(

Chelsea Clinton having a vegan gluten free wedding!

2010-07-30T11:36:00.001-07:00

Wow I think this is really awesome. Just getting the info. out there and educating them that gluten free vegan stuff does not have to taste terrible.

http://today.msnbc.msn.com/id/38474741/ns/today-foodwine/

I sprung a leak

2010-07-29T05:57:00.000-07:00

Seriously. Can dealing with Chiari get any weirder? Oh yes, yes it can!

Yesterday I woke up with a terrible pressure headache. I'd slept part of the night on a recliner and managed to smash the back of my head in. I could feel the back of my head didn't seem quite right, plus I had the feeling of a vise around my entire head and my eyeballs felt ready to pop out of my head!! I get these pressure headaches now and then, and they are really hard to get rid of. Sometimes I'll take a migraine pill (even though they aren't really migraines) and that will help. Also my upper vertebrae were very unstable. My neck LOOKED crooked. It felt like it needed to adjust so I'd stretch one way and it would pop loudly. Then later I'd stretch the other way and more loud clunks. Well when I woke up and had this terrible feeling I noticed my ear seemed wet inside. I stuck a tissue in my ear and a few drops of liquid were seen. I realized I SPRUNG A LEAK!

I wonder if something about the plane trips to and from Baltimore jammed something up inside my brain and is causing more pressure issues? I felt very similar in Baltimore, like my eyes were ready to pop out. I'm going to see the cranio-sacral lady tomorrow. I hope she can get things lined up again. Nuts, I tell ya.

Is MSG aggravting your allergies? Plus, D-Hist

2010-07-23T08:30:00.000-07:00

http://www.supermarketguru.com/index.cfm/go/sg.viewArticle/articleId/1415

There are a significant amount of people who avoid foods that contain MSG for various reasons - allergy sufferers may be the latest to join this group. A Johns Hopkins University study revealed that MSG may actually increase the activity of a protein in the nervous system that makes allergy sufferers more sensitive to irritants (i.e. make allergies worse!) If you suffer from food allergies or other seasonal or environmental irritants, you may benefit from an MSG free diet.

I could not agree with this article more. It seems allergies are a big part of my issues. I feel soooo much better without MSG! In addition I was trying a natural antihistamine called D-Hist. When I first started the D-Hist, I took a LOT of it. At first I didn't know if it was doing anything, but then I realized that I went a week and a half without a headache! To test, I stopped taking it and my sinuses instantly stuffed up. So yes, avoiding MSG and taking D-Hist really seems to help my allergies and pain. There are several different brands of D-Hist; you can find it in any health food store! I found it under the name "Quercezyme-Plus" under the Enzymatic brand. But it seems that the Nettle/Vit. C/Quercetin/Bromelain and some sort of amino acid (L-cysteine) is the combo that does the trick :) I highly recommend!

Silver Ring Splint

2010-07-21T06:19:00.000-07:00

The Silver Ring Splint rep. guy told me I needed this type of splint to help stabilize my thumb! http://www.silverringsplint.com/our-splints/siris-lateral-support-splint-single/ I am always wrapping it in tape because it slides around when I try to type or do anything with my hands. Then boy does it hurt!

Actually trying on all the ring splints made all my knuckles hurt :) It was just more exercise than they are used to. But I was bored so I was trying all the different styles on. The only joint that really bothers me at this point is my left thumb. But maybe if I have success with that one I could get more splints in the future! Woo hoo!

Letter from a doctor. . .

2010-07-20T10:59:00.000-07:00

I am flighty when it comes to docs. As soon as I sense doubt, anger or disrespect, I RUN!!! I guess that's good but I just read this article by a doctor about how WE make THEM feel! Very interesting. . .

A doctor writes to patients with chronic illness

Recooperating

2010-07-20T10:49:00.000-07:00

The EDNF Conference was a blast!!! I learned so much and it was amazing to see all the other bendy people IN PERSON! Some I have e-mailed back and forth with for years, but never met before! I learned a lot from Dr. Grahame. He said I do have EDS, and recommended:

See a podiatrist for inserts in my shoes, to keep my feet from rolling in.

See a gastroenterologist for digestion issues.

EXERCISE EXERCISE EXERCISE!

He said that I needed to exercise more so that my muscles could hold me together better! I asked him what type of exercise and he didn't really say. Just any and all, excluding contact sports. So I've been thinking about it and I'd really like to get a better bike. We have a nice somewhat secluded subdivision and it would be fun to just tool around. Problem is, my bike is ancient and is the kind where you lean forward while riding. My massage lady said that is more a "racing" bike. I need an upright style so it won't stress my neck/shoulders and it can absorb the shock better. Sooooo I've been looking around at bikes, trying to figure out which kind to get.

I felt horrible during the conference. I would start out feeling alright but the conference rooms were SO cold. Then my shoulders would clench up from the cold and the exhaustion and next thing I knew, I had a migraine brewing :( So by the evening I was popping migraine pills. It was al worth it though; I was affirmed of my EDS diagnosis by one of the top EDS docs in the world! I got my thumb measured for ring splints and bought a new silver PenAgain. Although I was in pain it was a really fun and educational experience. Maybe next time I can bring my family!

Owww

2010-07-09T06:04:00.000-07:00

My poor shoulder. I chopped down some hollyhocks last night on the west side of my house. Seems that we got so much rain they developed this strange mold/fungus on them and they looked absolutely horrible (The picture is what they are SUPPOSED to look like). I felt sorry the neighbors had to look at them so yesterday while my son was at my parents', I decided to chop them all down. It was hot and sweaty work but it had to be done.

Now today my right shoulder is sooo sore :(

My yard has really started going downhill since my shoulder surgery last year. I was pretty much unable to prune things or pull weeds after Aug. 2009, and then it rained so much this spring, all the weeds and flowers went wild! I try to take it in sections - last night I did the west section between the air conditioner and the patio. Tonight or sometime this weekend I need to do the section between the air conditioner and the corner of the house.

I used to have perfect gardens. Now with the wacky weather and my wacky shoulders, it is a bit of a challenge :-/

Fibromyalgia: The Diet Connection

2010-07-07T10:26:00.001-07:00

Here is a good article about which foods aggravate fibro:

http://www.webmd.com/fibromyalgia/guide/fibromyalgia-the-diet-connection

A quick rundown:
1. Aspartame
2. MSG, nitrates and other food additives
3. Sugar, fructose and simple carbs
4. Caffeine
5. Yeast and Gluten
6. Dairy
7. Nightshade plants

OK yes this article pretty much hits it on the head. I cannot eat #1, #2, (#3 sparingly, #4 sparingly) #5, #6 (cultured only such as sour cream, cheese or yogurt), and #7 I can eat but not in large quantities.

I already knew this from my own experience, but it is nice to be validated once in awhile!

I swear I am not making this up!

2010-07-02T05:35:00.000-07:00

The weirdest thing happened to me last night. I mean WEIRD! My left shoulder has been bothering me for weeks. Basically everytime I lifted it up and rolled it back, it would pop and you could SEE it popping and moving in an odd way. I showed my hubby and he was pretty grossed out and said "You better go back to the doctor!" I could not get it to stop popping no matter how much I stretched, massaged, Reiki-ed it, iced it, heated it, etc.

Last night I did more Reiki on it - and it got red hot with energy being released (the hotter it gets, the more messed up I know it is). Then, after my evening shower the left jaw let out 2-3 pops and I felt it move and. . . VOILA! My shoulder was no longer popping!! Now can anyone explain this?!

I was "this close" to going back to the shoulder doc. He would've MRIed my shoulder and done all kinds of things to my shoulder WHEN IT WAS MY JAW ALL ALONG! Here I thought it was the other way around - the shoulder was making my jaw hurt :-/ I did a little research and found this interesting info:

"Muscles work as a team. Seldom does a single muscle work without other muscles in the team joining in. The bones in the neck, especially the atlas and axis, are intimately involved with the muscles of chewing, biting, talking, breathing, and head posture. Sore, tight, contracted muscles of the jaw will tilt the head and shoulders causing compensation from neck, shoulder and back muscles."

- From http://www.leadingdentist.com/common_symptoms/neck_shoulder_pain.html

Another informative site: http://www.tmjcherin.com/tmj.html

You know what they say - the head bone's connected to the jaw bone, the jaw bone's connected to the neck bone. . .etc. :) All those bones slip out of place on me, so it would make sense I guess. Better start wearing my splint more often.

Severe pain

2010-06-30T07:05:00.000-07:00

Every so often I wake up with a crunching sharp-type pain in my right shoulder. It feels like my neck and shoulder are being twisted like when you wring out a wet towel! Only it stays twisted all day long and turns into a stabbing feeling! Sometimes when this happens I will call off work, church, other activities so I can rest. Other times I pop some pain meds and hope for the best. Today I tried the second option, since I have some deadlines to meet at work. So far it's not going away but - I am trying to not use my right arm and see if that helps. I do suspect it is my thoracic outlet getting crunched up again. It hurts like hell.

Oh and did I also mention I'm fighting off another UTI?? Grrrr.

Ridiculous weather

2010-06-25T10:36:00.000-07:00

OK right after my head was un-jammed. . .mother nature decided to unleash some ridiculous weather! 90 degree humidity followed by 5 tornadoes! Followed by cool 70 degree weather!

I was feeling really good up until the tornadoes came in. I was out picking black raspberries in my back yard when the clouds covered up the sky. I went in and showered in case we lost power and sure enough - the lights started flickering on and off then - OFF! Later we found out that several small tornadoes had been blowing through. They were all around us - F0 and F1s. We were in the basement so we didn't see or hear anything except a bunch of rain and wind. When we came out, there were a few tree branches down. We did hear sirens go by. It wasn't until the next morning we heard about the tornadoes. It was scary because the tornadoes were coming at us right after we lost power, so we didn't know they were there.

The next day we were able to drive around town and see some of the carnage. Trees overturned onto houses and cars. Branches everywhere. Just a mess! But it could've been a lot worse. Luckily no one was injured from any of these. Thank God.

So I've been feeling blechy but counting my blessings.

Jammed up skull

2010-06-23T11:49:00.000-07:00

Yep - just as I was suspecting, the base of my skull/back of head was jammed up! My cranio-sacral practitioner was able to get it back into shape. I could feel my head getting wider and taller. Hooray! I am in a much better mood now. I hope it stays this way for awhile 'cause I don't want anymore tongue-biting or arms going numb. The problem with me is the bones don't STAY where they are supposed to, due to the EDS... They slide all over the place. When I sleep, the weight of my own head squishes my head. Then it's all out of joint all over again. It sucks. She suggested putting a rolled up towel under my neck at night. I may try that and see if it helps!

Biting tongue

2010-06-22T06:16:00.000-07:00

WHAT THE *#&@??!!! Sunday I was trying to eat and bit my tongue 2x HARD! So hard that I bled and left a little flap of skin sticking out on my tongue :( More Chiari fun I'm afraid. I did figure out my jaw alignment was way off so I wore my mouth splint to get it back in line. This has been happening to me quite frequently. I never bit myself this hard before. My tongue was sore for days. A month ago or so I did the same thing and the bottom of my tongue turned purple for about a week. YIKES!

I should probably go back to the Chiari doc., but he sort of brushed me off so I'm wondering if I should find a new one.

Naturopath update

2010-06-22T05:46:00.000-07:00

Well I went back to my naturopath doctor lady yesterday. She was kind of taken aback when I told her some of my reactions to some of the supplements she had given me. She kept saying "That's not supposed to do THAT!" I told her "Welcome to my world." :) For example, the progesterone cream she gave me caused me to have 3 migraines per week when before I was only having 1 migraine per week. Also, the DIM supplement made my thyroid swell up. She agreed that I should NOT take those anymore due to the side effects I was having. But she still didn't know what to do about my hormone imbalance. I was going to tell her I'm taking Vitex/Chasteberry, but for some reason I forgot.

I described to her how that morning I felt wonderful until some storm clouds rolled in. Then I felt terrible. It was a night-and-day difference and she said that weather sensitivity was related to allergies. There were a lot of silent pauses as she was racking her brain. She decided to try putting me on some natural antihistamine supplement called D-Hist. I have no idea what's in it, but she said it was pretty effective for allergies. And just my luck! They were out - so I have to go back later this week and get it.

Also I told her of some of my woman issues and she said it was my thyroid and that she would need to re-test that. So they drew blood to have my thyroid levels re-done.

She was concerned about my swallowing issues. I told her it's not severe - just that I choke on water occasionally and have trouble swallowing pills at times. She was ready to send me to a Gastroenterologist. I didn't want to do that! I don't think it's a physical thing, I suspect it's more of a neurological thing. I told her it might be from my Chiari and she didn't know what Chiari was :| Yes, I had neglected to tell her about THAT. I don't go into all my diagnoses when I first meet new docs; I like to figure out if they are open to new information first. If they aren't then they try to tell me I don't really have that and there is nothing that makes me more angry and frustrated!!! I haven't spent the last 8+ years running around to different docs. just for the fun of it!

I'm 100% positive that the diagnoses I have received are accurate. I've studied them and talked to literally hundreds of other people with the same problems. So just because a doctor has a big ego because they've been to medical school doesn't mean they can dismiss my information. They even dismiss the information from other health professionals just because they're a different specialty (and think they know it all)! That's what irritates me to no end. I wish I could collect all the useful people and sit them down in a big room and make them talk to each other. My massage lady could say how my muscles are spasmed up everytime. My neurosurgeon could say YES she has Chiari but we don't want to operate just yet. The EDS specialist could tell them all what kind of EDS I have and what it means. The naturopath could explain food sensitivites and how they aggravate all my other conditions. Then maybe they'd all believe ME when I go in and tell them what I have and what is working/not working. I'm so frustrated with this inefficient and expensive system.

Anhidrosis

2010-06-11T10:51:00.001-07:00

OK another summer weather dilemma. It seems that I have trouble regulating my body temperature. When it's very hot outside like today, I get really red in the face and dizzy. I don't sweat much. I looked it up and found that the name for this is Anhidrosis.

"Anhidrosis (also called hypohidrosis) is defined as an absence of sweating. Anhidrosis can affect small or large areas of the body and be caused by one or more of dozens of factors. No one knows exactly how many people are affected by anhidrosis. That's probably because people with mild cases of the condition may not even be aware that they have it, or, if they are, they may never report it to their healthcare providers.

While hyperhidrosis sufferers may find themselves thinking that anhidrosis doesn't sound like such a bad thing, the truth is that being unable to sweat is potentially life threatening. Sweat is essential to human survival because it serves as the body's coolant, getting rid of excess body heat (produced by your metabolism and working muscles) and protecting you from overheating."

- from http://www.sweatsolutions.org/SweatSolutions/Article.asp?ArticleCode=26497017&EditionCode=87373635

From the Mayo Clinic website:

"Signs and symptoms of anhidrosis include:

■Little or no perspiration
■Dizziness
■Muscle cramps or weakness
■Flushing
■Feeling hot
A lack of perspiration can occur:

■Over most of your body
■In a single area
■In scattered patches
Unaffected areas may try to compensate by producing more perspiration, so it's possible to sweat profusely on one part of your body and very little or not at all on another. Anhidrosis that affects a large portion of your body prevents proper cooling, so vigorous exercise, hard physical work and hot weather can cause heat cramps, heat exhaustion or even heatstroke.

Anhidrosis can develop on its own or as one of several signs and symptoms of another disorder, such as diabetes, neuropathy or psoriasis."

- from http://www.mayoclinic.com/health/anhidrosis/DS01050/DSECTION=symptoms

I find this really interesting because for the longest time, I would hardly sweat at all. And now all of a sudden I feel like my tempature is higher and I'm starting to sweat a lot under my arms! Why? That is the question. I still get red in the face instantly when out in the heat. Could be thyroid, could be hormones, could be meds, Chiari. . .

Allergic to the sun :(

2010-06-11T05:38:00.000-07:00

I have this problem every year. Certain parts of my body are allergic to the sun and I get a bright red rash in the shape of whatever clothing I was wearing at the time :( I went to pick strawberries yesterday for a half hour, and I wore a tank top. At the time I was hot, and wanted my skin to breathe. When I got back I looked at my back and didn't see any burn. But by the end of the day - YIKES! It had turned bright reddish pink in the outline of where tank top was!!! Strangely I didn't even notice any pain or itching until I saw how red it was.

This website I found said it's "Sun Poisoning Rash" and is actually an allergic reaction to the sun! http://skincare.lovetoknow.com/Sun_Poisoning_Rash

My back looks JUST like this, with the bright red and then white unexposed skin.

The other odd thing about this is it doesn't seem to be prevented by sunscreen. Sometimes sunscreen will help, but other times it won't. When I went to Florida I slathered myself head to toe with sunscreen and still broke out with this rash all over. It was really embarrassing! I spent the whole week covering myself with aloe vera gel!!!

Also, certain parts of my body will eventually become immune. I used to get it everywhere but slowly my arms and legs became more immune. My back and trunk get it worst because those areas are not exposed to sun as much. I build up tolerance over time. Weird and unexplainable, having this pale EDS skin!

Gluten Sensitivity/Celiac Disease video

2010-06-07T13:34:00.000-07:00

I came across this video today. It's really informative about gluten, gluten sensitivity, and celiac disease. It is well worth the 37 minutes of education!

PenAgain

2010-06-03T06:26:00.000-07:00

Yesterday I was talking to my cranio-sacral lady about Ehlers-Danlos Syndrome. I mentioned I was having trouble using my fingers and writing, and she whipped out her PenAgains!!! I had heard about other EDSers using these, but I didn't realize how awesome they are until I tried hers!! They are soooo easy to write with. I have trouble gripping the pens/pencils usually. I feel like I have to really PUSH down hard to get a decent mark. When my shoulders are acting up, my handwriting becomes really wobbly and strange. With these pens, you don't have to grip and push so hard. Your hand rests comfortably in the "Y" and you use the weight of your hand to make the mark. WOW! Anyone with arthritis, joint problems, tendonitis, arm or shoulder pain, I highly recommend these!!

http://www.amazon.com/PenAgain-Blue-Ergo-Sof-Pens/dp/B001AZ1E8Q/ref=sr_1_2?ie=UTF8&s=office-products&qid=1275571689&sr=1-2

I am immediately going to get some :)

The creeping crud. . .

2010-06-03T06:12:00.000-07:00

According to urbandictionary.com:

creeping crud
military slang for highly contagious virii such as colds, stomach bugs, etc. that leave a person with any debilitating combination of non-stop runny nose, coughing up heavy phlegm, vomiting, diarrhea, extreme muscle weakness/pain, etc. The "creeping" part refers to the fact that it seems to make its way through ALL of the ranks eventually.

Yep that's what happened at our house!! Usually I do NOT get sick. I take lots of vitamin C/zinc/echinacea as soon as I feel any kind of virus coming on. But, this time it didn't work :( My hubby had it for 3 weeks, my son for 2 weeks, and then finally I succumbed. My massage guy who uses essential oils said the oils would protect me - and if I did manage to catch something it would keep me from being severely sick. I guess it could have been much worse! I felt like well, crud, for about 3 days but not so sick that I had to miss work and violate their silly attendance policy. I toughed it out, probably spread it around to a few people - oh well! Then after feeling slightly gross for a few days I ended up with his annoying tickly cough.

I thought about going to the doc for this, until my cranio-sacral therapist told me "just wait and see if it keeps getting better." It does get slightly better each day. I'm worried about getting a bacterial infection in my lungs like my son did (he's on antibiotics now and getting better). I took some cough medication and OH MY! I'm not used to taking those meds anymore. I felt extremely strange - loopy and hyper. Not gonna take THOSE anymore if I can help it!

I think the reason I fell to this is I've been busy taking care of our new dog! She is a sweetheart, but it has been an adustment for us all. I was pretty worn out the first few weeks.

Erythema nodosum/multiform

2010-05-28T07:44:00.000-07:00

When I was a teenager I used to get red ring-like rashes on my back, behind my knees, in my elbows, on my neck - everywhere. They would come and go. My doc at the time thought it was ringworm and gave me anti-fungal cream. Then miraculously they would disappear. They didn't really itch - they just looked extremely weird! It was creepy because they would start as a red dot, then grow into a large ring, and the ring would get bigger and bigger then break up and disappear pretty much on its own. Wellll I was doing research on Crohn's and found the name for it!

Erythema nodosum

Sometimes it would look more like this:

Erythema multiform

Notice how the center of the circles are white! My jaw dropped open when I read this because it was an annoying problem we never quite figured out, and it looks JUST like what I had! (also shown in the photo here)

Currently I have some on my hands. Little slightly itchy red splotches that gradually grow bigger then disappear. Another reason why I should look into the Crohn's issues. They seem to be worsening; I'm getting cramps in my intestines, a stabbing pain in my lower-right abdomen and more frequent diarrhea. Maybe it's not irritable bowel but rather the beginning of Crohn's? I'll be sure to ask my naturopath doc. when I go back next month.

Crohn's Disease

2010-05-28T07:32:00.000-07:00

Since my cousin has been diagnosed with Crohn's, I am researching it and realizing this might be another cause of my problems! I would say about... 10 yrs. ago or so, I started noticing my abdomen swelling. I used to have a super flat stomach! I was so skinny, my stomach was concave! Then after my son was born of course my stomach stuck out a bit. But when all my headaches and stuff started, my belly started bloating. It still does this, and I have to wear pants that "cinch" my belly in or I look pregnant! Sometimes I look like a starving child in a third world country. I'm still pretty thin throughout my body except for that puffy belly.

Then I started thinking - maybe I AM malnourished! My body seems to be getting punier and weaker. It almost seems that my bones are flexible!

So I did some research on Crohn's.

"The most common symptoms of Crohn's disease are as follows:

•Small intestine: Watery diarrhea, abdominal pain, weight loss, appetite loss, and slowed growth. Slowed growth may precede other symptoms by several years. Often the symptoms are very subtle.

•Colon: Bloody diarrhea with mucus or pus, cramping abdominal pain, urgency to defecate

•Anus/Rectum: Painful defecation, rectal bleeding, rectal pain

•Upper small intestine: Nausea, vomiting, abdominal pain, poor appetite.

Many people with Crohn's disease have at least one manifestation of the disease outside of the intestine.

•Growth and development problems: Stunted growth and delayed sexual development, or delayed puberty, are common problems in children and teens with Crohn's disease. These problems are believed to be due mostly to undernourishment.

•Arthritis: Joint pain is the most common manifestation of Crohn's disease outside of the intestines. It usually comes and goes and does not deform the joints. It occurs most often in the large joints of the hips and legs and in the spine.

•Skin problems: The most common skin manifestation of Crohn's disease is erythema nodosum, which consists of raised, tender, red bumps (nodules), often on the lower legs. This condition is less common in children than in adults.

•Mouth ulcers: Painful mouth sores may occur during flares of the disease. Occasionally they are the first symptom of the disease.

•Eye problems: Various parts of the eyes can become irritated, inflamed, and painful. In some cases, this can impair vision.

•Urinary problems: Crohn's disease can cause problems in the kidneys (stones), ureters (for example, urinary tract infection), and bladder. These often are a result of chemical imbalances related to poor nutrition and absorption.

•Liver and gallbladder disease: Various liver and gallbladder problems occur in people with Crohn's disease, including hepatitis, fatty liver, gallstones, and inflammation of the bile ducts. In some cases, these are side effects of the treatment rather than of the disease itself.

•Abnormal blood clotting: People with Crohn's disease have an increased risk of blood clots forming in the blood vessels."

- from http://www.emedicinehealth.com/crohn_disease_in_children_and_teens/page3_em.htm