Severe pain

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

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

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

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

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

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 :(

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

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

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. . .

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.