Back to yoga - and new fibro symptoms :(

Well my lower back and legs were totally freaking out about not doing yoga for 6 weeks. It seems whenever I miss yoga, my lower back starts spasming and popping, and my thigh area gets really tight and has this wierd "prickly" sensation. It freaks me out too because it's such a strange feeling. If I use my imagination, I'd guess that the fascia is tight and it needs to be massaged back into a loose state. Or perhaps my hips are going crooked again, which causes the spasming and tightness. I just chalk it up to another one of my weird new fibro symptoms :(

So last week I asked the PT lady (the NICE one who is a PT not a PTA) if it would be OK for me to go back to yoga. She said it would be OK as long as I didn't put my weight onto the shoulders. Sitting, standing exercises would be OK. Even hands and knees poses like Cat/Cow would be alright as long as the weight is distributed equally on all four limbs. So yesterday I decided to give it a try.

I was soooooooo incredibly excited to be back to yoga. The teacher and some of the students asked where I'd been and I explained my shoulder surgery and how I couldn't lift my arm to the side or put weight on it yet. My teacher suggested instead of Down Dog, I do Forward Fold. That sounded good to me and OH MY! It felt so nice! I realized that I'd been holding my breath in from all the pain and tightness. Once I started the yoga, my lungs were expanding fully and my whole body could relax! It was great.

There was some soreness from certain arm positions, but afterwards I realized my shoulder felt so much looser! After the class I felt kind of sleepy but in a good way. It was hard to stay awake the rest of the day. I found a cool article from Yoga Journal on Managing Fibromyalgia.

Reiki!

I'm sorry the last couple posts have been kind of negative. I'm just frustrated with carrying a sore arm around all day :( It's tiring and I'm tired of the pain. But - I had the NICE physical therapist yesterday! She is so friendly and talkative, as opposed to the other lady who's more bossy and less talkative. The nice lady focused in on what I was having trouble with - namely, lifting my arm to the side. I can raise it forward pretty well, but out to the side is a challenge! She gave me some more exercises to do that will help me stretch that way a little better.

Also I wanted to share one of my coping techniques! Reiki!

I was raised in a very Christian environment. We would do laying on of hands, but if someone called it "Reiki" we'd laugh at them. However now I believe it is basically the same effect!

"Reiki is a Japanese technique for stress reduction and relaxation that also promotes healing. It is administered by 'laying on hands' and is based on the idea that an unseen 'life force energy' flows through us and is what causes us to be alive. If one's 'life force energy' is low, then we are more likely to get sick or feel stress, and if it is high, we are more capable of being happy and healthy.

The word Reiki is made of two Japanese words - Rei which means 'God's Wisdom or the Higher Power' and Ki which is 'life force energy'. So Reiki is actually 'spiritually guided life force energy.'

A treatment feels like a wonderful glowing radiance that flows through and around you. Reiki treats the whole person including body, emotions, mind and spirit creating many beneficial effects that include relaxation and feelings of peace, security and wellbeing. Many have reported miraculous results. "

- from Reiki.org

I love Reiki so much, because it is so relaxing yet energizing at the same time! I was "attuned" to Reiki by a Christian minister who lives nearby. When I first started having health probs, I thought Reiki and alternative healing methods were a bunch of you-know-what. I didn't try any of them because I thought they were just a figment of peoples' overactive imaginations. However as the pain got worse and worse, I started to get desperate. I'd tried every medical option I could find and was going downhill! This was a very confusing and depressing time.

Finally I heard of an "energy worker" who did massage therapy. Desperate for relief I took on my motto "I'll try anything once!" I heard very good reviews on this person from other people with EDS. At the time, he was traveling around the country working on EDSers to sort of build up his knowledge. I decided to give it a whirl. At first, I didn't feel at thing but by the end of the 2 hr. session I could feel a "buzzing" going through me. "Well that's odd," I said. "I get that a lot," he replied.

I did feel better for quite awhile after that, but then things slowly regressed back to how they had been. He told me to work on myself everyday but I wasn't really sure how, so I kind of forgot about it. Until one day, someone else was talking about the same thing on one of the EDS support groups. They said, "Put your hands slightly above your body and just feel where your hands are drawn." I did that, and suddenly my hands felt like magnets drawn to my neck. I started learning how to put my hands over the area of pain, and some of the tension and irritation would warm up and leave. I'm writing this so you all will understand, I was a skeptic! When I felt it for myself, I could NOT BELIEVE IT!

Now some people still might think I'm crazy, but I really don't know where I'd be without Reiki. Since I kept practicing and practicing, and had my 2 attunement classes, I've gotten better and better at it. This month they're having a "Reiki Share" at a local bookstore and I'm psyching myself up to go. I'm a little nervous and apprehensive. I'm not a "professional" at this yet! But I figure what a better way to practice?

Saying bye-bye to the sling

My physical therapist lady sometimes seems so silly and random. For example, when I first started PT she scolded me for lifting my arm of its own power to put it back into my sling after my stretching. She said "I see you're using your arm when you're not supposed to!"

OK so I wasn't supposed to be using the arm even though I was trying to get the ROM back? Hmmmm.

So then the next visit she said, "You're doing so well you don't have to come back on Friday."

So I was doing something right???

This week she said I need to wean myself off the sling! So, a week ago I wasn't even supposed to move my arm, but this week I'm supposed to get rid of the sling altogether! Does that seem strange or what?

So, this week I've been trying not to use my sling at all. Monday and Tuesday I used it in the morning only and today I'm going to try going cold turkey. Oh wait she said don't go cold turkey!!! But, I'm supposed to be totally out of the sling by tomorrow! I'm so confused. Oh YEAH! How about I just trust my own body and how it feels! (insert pbbbbbbbbt noise here)

Save Natural Thyroid!

http://www.savenaturalthyroid.com/

I'm a little bit peeved about this. I've been taking Armour thyroid for about a year and a half. I felt so good as soon as I started on it! An osteopathic doctor prescribed it to me when we were trying to figure out the source of some of my pain. As soon as I started on it my back spasms completely disappeared! About the time of my shoulder surgery, I ran out and tried to pick some more up at my local pharmacy. They said it was backorderd. I kept calling and calling hoping that some would miraculously show up. No luck. Backordered, backordered, and no one had it. Meanwhile I ran out of pills and had to ask my doc for a different med. He prescribed Synthroid which is a synthetic thyroid hormone.

Well for me I'd say it's better than nothing, but not as good as Armour. I started getting some back spasms again and about the time I sit down for dinner in the evening I break out in a cold sweat. I ask my hubby "Is it hot in here?" and he says "No." I'm pretty sure it's from the Synthroid 'cause I never got that feeling with Armour. However I'd hate to see what I'd feel like without any thryoid med - it would be back to feeling tired and sluggish, sleeping all day and gaining weight for no reason.

From what I read, the FDA has targeted natural dessicated thyroid meds as "unapproved drugs." People have been taking it for YEARS and they're just now deciding this? Armour is not a big moneymaker for the drug companies so they are not fighting the decision very hard. This makes me angry because there are thousands of other people like me. Who is going to speak up for people who need this medication?? What about the people who've taken it for years longer than me, and are now going without? Just because it's an inexpensive treatment, no one wants to bother with us???!

I have joined this group and I'm hoping they will offer some ways we can speak up.

Shoulder rehab

The shoulder rehab is going extremely well! They gave me one of these handy dandy exercise pulleys that go over a door, and you pull the handle with your good arm to exercise the bad arm. It has really improved my ROM. The PT lady was AMAZED how quickly my ROM improved once I started doing the home exercises! I was doing so well they started me on the arm bike and other exercise equipment yesterday. They also canceled my Friday PT appt. since I don't really need it :)

She said I can take my arm out of the sling while at home, and also I can start using my right hand to eat! This is huge becuase it's really slooooow eating with my non-dominant hand. She said I can type for short periods of time. Other than that I'm to continue wearing the sling and not use the arm much. It's still healing and a bit sore, depending on what I do. I tried sleeping in bed again the past couple of nights. My lower back was starting to get messed up from sitting up so long. Plus I sleep better. The flip side is my arm gets sore from being in a different position while laying down. I try propping it up with pillows, but it always gets shifted around during the night. Oh well. Progress!

Nasal Irrigation

I used to be one of those kids who got sinus infections constantly. Even when I got older I often had to go to the doc for antibiotics. I took antihistamines and decongestants to clear out my often clogged nose. That was until I started to realize those meds made me feel SICK! So I stopped taking them. Then my nose was always clogged up with dry and sometimes bloody gunk :( My nose would get dry and gross during the winter. I was always trying unsuccessfully to clear the dried gunk out of my nose. I wasn't allergic to anything in particular, just dust in the air I suppose!


Last winter, getting tired of battling this, I decided to try out a neti pot! I'd heard of them but thought they seemed a little odd. Pouring water into your nose on purpose?!


Finally I decided to try it with an open mind. I will try just about anything ONCE!

I was pleasantly surprised! It did sting a bit, like when you go swimming and water gets up there. But for once, my sinuses were clear and hydrated, and they had a warm cozy feeling. So I continued the cleansing all winter up until I had surgery. I have just went back to it. I'm having some stinging so I'm going to try baking soda in the water. The only other problem I noticed was if I bend over I sometimes have "surprise" draining. That only happens if I haven't cleansed for awhile and my sinuses are inflamed inside.


I did a quick web search and found many sites explaining the benefits of nasal irrigation:
http://www.highlighthealth.com/diseases-and-conditions/saline-nasal-irrigation-more-effective-than-spray-for-chronic-nasal-symptoms/#s-article

http://www.mayoclinic.com/health/nasal-lavage/MM00552

http://en.wikipedia.org/wiki/Nasal_irrigation

Pills

OK I just need to vent about one of my pet peeves. It's people telling me which pills I should and should not take. When I first started this whole mess, I had a heart surgery to fix my tachycardia (fast heartbeat) so that I wouldn't have to take pills anymore! HA! At that time I was only taking one pill! Now nine years later I'm on more like eight pills! Clearly not the goal I was going for :(

So now I find myself taking all these pills just to function. Do I like taking them? No not really. Some of them make me feel spacey and/or tired. But if I want to be able to do things like work, take care of my home, cook, garden, participate in any outside activities, etc. this is just what I need to do.

I've found that people are really different when it comes to meds. Some med might work for ME but make YOU feel worse! It's pretty much trial and error. I've tried several meds that made my pain worse or made me throw up. Then there was the time I had an allergic reaction complete with rash over my entire body and severe itching! That was not pleasant at ALL. So, I feel that right now I'm on the best meds for ME and my symptoms. I try not to feel too guilty about this. It's not my fault I have all these weird problems. Plus, I try to limit the amount of each pill I take. I try to get the lowest possible dosage that is effective for each particular problem.

So when people tell me I shouldn't be taking a certain med, I get angry. It's like they think they know me better than I know myself. If my doctors tell me to stop taking one of my meds because they just learned of dangerous side effects, yes then I'll switch to something else! Right now I am trusting my own instincts and my doctors' advice.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Ehlers-Danlos Syndrome, Chiari, and Fibromyalgia
2. I was diagnosed with it in the year: 2005
3. But I had symptoms since: 2002
4. The biggest adjustment I’ve had to make is: Cutting WAY back on activities
5. Most people assume: Since I look OK and I'm young, I must *BE* OK
6. The hardest part about mornings are: Getting over the slugishness and stiffness
7. My favorite medical TV show is: Mystery Diagnosis
8. A gadget I couldn’t live without is: My TENS unit
9. The hardest part about nights are: Getting into a comfortable position where my head and shoulders are not hurting
10. Each day I take _8_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: Will try anything once!
12. If I had to choose between an invisible illness or visible I would choose: Visible
13. Regarding working and career: I am still able to work and I love my job!
14. People would be surprised to know: I have a really high pain tolerance
15. The hardest thing to accept about my new reality has been: Wondering if we can handle another child
16. Something I never thought I could do with my illness that I did was: Start this blog and reach out to others
17. The commercials about my illness: I wish there were some to spread more awareness about EDS and Chiari. Fibro commercials are always about medications!
18. Something I really miss doing since I was diagnosed is: Eating junk food
19. It was really hard to have to give up: Traveling
20. A new hobby I have taken up since my diagnosis is: Making jewelry
21. If I could have one day of feeling normal again I would: Go to an awesome concert by one of my favorite musicians. Oh and drive there myself!
22. My illness has taught me: The true meaning of life
23. Want to know a secret? One thing people say that gets under my skin is: "There's nothing wrong with you."
24. But I love it when people: Share my dark sense of humor about the whole situation
25. My favorite motto, scripture, quote that gets me through tough times is: Light tomorrow with today
26. When someone is diagnosed I’d like to tell them: You may feel depressed and sorry for yourself at first, and that is normal. Go find a support group related to your condition and you'll learn loads of tips, tricks and info. Also you'll realize there are a lot of people "worse off" than you are. Be proactive and learn all you can.
27. Something that has surprised me about living with an illness is: How difficult and tiring it is
28. The nicest thing someone did for me when I wasn’t feeling well was: Brought me food!
29. I’m involved with Invisible Illness Week because: Invisible illnesses need to be publicized so people stop accusing us of being hypochondriacs!
30. The fact that you read this list makes me feel: Happy to get the info out there!

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at http://www.invisibleillness.com/

Shoulder update

Tomorrow I start PT again - OH JOY (<------------insert sarcasm here) But the good part is, I'll be able to use my arm more! Lately I've begun to use my fingers ever so slightly. I picked up some light items such as paper or a sock. I was able to push a couple buttons. But even that is progress after not being able to use that hand for 3 weeks! I try not to use that arm, as it's still kind of sore at times. But when I do, I have a really weird sensation. It feels like my arm has been shrunk!!! I'm not sure if it's because the joint has less range of movement now, or what. It's a very strange feeling! Kind of the opposite of Inspector Gadget arms. Or maybe that's how Inspector Gadget feels after his robot arms have been stretched out awhile and he reels 'em back in :)

Healthcare reform

I put up a link to http://www.whitehouse.gov/realitycheck/ because I think health care reform is important. Now I hope before someone calls me a socialist or something silly, just hear me out on this one! Forget about politics and who you voted for. OUR SYSTEM IS MESSED UP! Take it from me - I've been to more doctors than someone twice my age.

One night I had a nightmare that I was on a conveyer belt. I was going along on this belt and I was supposed to hop off at the correct doctor's office. I was confused and didn't know which door to hop off to. Chiari. . . EDS. . .fibro. . . I couldn't decide so I kept going along on the conveyor belt like a lost piece of luggage. Finally at the end of the conveyor belt was a dumpster where people were dumped to die. As I went into the dumpster I yelled "But I'm not THAT sick!!"

That is how I feel about our current health care system. If you don't fit into a certain medical "box" you get shuffled along from doctor to doctor. Each one gets all the money from you that the insurance will allow before you get passed on to the next. I think it's horrible that our system is run by profits rather than trying to make people well. Plus, they focus on one section of you rather than seeing you as a whole person whose different parts are interrelated.

I don't think this is the fault of the doctors, nurses or other professionals. Many of them have helped me a lot! But I do think someone needs to introduce some reform into the system. I don't mind all the talk and controversy - I think difficult discussions will bring about an even better result! The thing that bothers me is the lies and fear being spread - such as people saying President Obama wants to kill your grandma. That is so totally ridiculous! I hope that people can use their common sense and find out the facts for themselves.

Thom Hartman (a radio show host) suggested instead of creating a new public option, maybe all we need to do is expand Medicare for people that don't have health insurance. I thought that was a good idea. We already have "socialized medicine" in the form of Medicare and the Veterans Health Administration. The vets seem to like it! Food for thought.

Thoracic Outlet Syndrome

Here is another issue of mine: Thoracic Outlet Syndrome.

"Thoracic Outlet Syndrome (TOS) is pain, numbness, tingling, and/or weakness in the arm and hand due to pressure against the nerves or blood vessels that supply the arm. It is due to tight muscles, ligaments, bands, or bony abnormalities in the thoracic outlet area of the body, which lies just behind the collar bone. Pressure on the nerves is the problem more than 90% of the time, but occasionally the artery or vein is involved."

- from Dr. Richard J Sanders, author of the book "Thoracic Outlet Syndrome"

More at atosa.org

When I went to see the Chiari specialist, they tested my feeling in my arms and hands. They were QUITE surprised when they discovered I had TOS! I said, "Oh yes I've heard that before," and then they didn't tell me what to do for it! I was a bit annoyed. A very experienced and knowledgable massage therapist also told me I had TOS. He explained that carpal tunnel is often confused with TOS - except with TOS the compression is happening higher up in the shoulder area, and the numbness occurs in the 4th and 5th fingers rather than the thumb and forefinger. This all describes me to a "T". Long neck, slouchy hypermobile shoulders, former whiplash injury plus hunching over a computer keyboard all day = TOS!

I am hoping that wearing the sling and getting more PT will really help stretch and heal the area!