Friday, June 5, 2009

Thank you and update

The last couple of years have been a real struggle for me health wise. I've blogged about it before, so I won't rehash it all but am still hopeful to return to a somewhat normal life.

I'm learning I must re invent myself....which isn't easy. I have a million things I want to be doing....but many days have not enough energy to do even one. It's a learning process for sure.

I had so many unrelated symptoms followed by numerous tests --- some of which required me to be pumped full of 'garbage' (dyes and such) that caused me to have severe adverse reactions. It made me worse...instead of better....and all of that to be dx with Gas. Well.....I've really all but given up on modern medicine. Quite frankly, I am terrified to entrust such an important thing as my health into that scenario again. Even if I wanted to, I simply don't have the energy to do so. (For example when I first went to the Dr., I could not lift my arm. With barely any checking she told me it was frozen shoulder and I needed physio. I countered with I didn't think it was my shoulder as I could move my shoulder was my hurt in my armpit and the muscle area of my arm and I felt so swollen in the whole area. Nope...against my better judgement (but what do I know) was frozen shoulder. Fine....a month later off to physio I went...and guess what? The physio people said...hmmmm .... it's not frozen are really swollen and need to go back to your Dr. ASAP....they were afraid of breast cancer. What if it had of been breast cancer? I wasted a whole month (and medical resources that could have been used by somebody who really needed those services) all because she had no interest in listening to what *I* had to say.

Thankfully, there are other avenues open to me. I have found it most educational reading the blogs of those who also have CFS. I am thankful they take the time (even though they are sick themselves) to write about their struggles (makes me realize my symptoms *are* real and not just in my head), what works for them and what doesn't.

Through these blogs I have found a book, written by a Dr. in the UK. She has treated CFS patients since the early 80s...and what I read in her book was just amazing. She *gets* it. I've implemented some of her suggestions and had some success.

This illness is multi-faceted. There are many things to deal's not a one size fits all cure.

I've been visiting a homeopath and again am pleased with the results I've had here. (For one thing...there are many....the recurring hives I encountered ever since having the CT scan have all but stopped.)

Besides the debilitating, ongoing fatigue, the post exertional malaise, the burning muscles....I've had this incredible amount of swelling which nobody has been able to help me with. I had a fleeting ray of encouragement when I visited one specialist. He said he could see my soft tissues were swelling (he noted swelling in areas I hadn't noticed yet...hence my ray of encouragement). That soon went out the window though when he said he was certain I've been like that for a long time...probably born like that (which it hadn't and I certainly wasn't born like that...I would have noticed all that swelling. I've always been thin and for a time in my life..I used to get asked if I was anorexic). No this was something new to me and it had only been going on since this illness started....but again...what do *I* know...he's the expert...insert another eye roll here).

I've been searching and searching to find out just what this swelling could be caused from. I'm certain it's not gas (insert eye roll here) it's all fingers, my arms and legs, my face, my stomach..... My waist was 10 inches larger than it was before I became ill and it seemed to be getting worse. At one point, one arm was 1.5 inches larger than the other one. I came across a fellow CFS blogger and was intrigued when reading his posts, he stated his face was so swollen his mother did not recognize him when he got off the plane.


Finally someone else who had swelling. I left him a message on his blog and he responded it was backed up lymphatic system. He left some suggestions for me to being a mini trampoline/rebounder. I googled that....and WOW! So...I used some of my birthday money and bought myself one.

It's way to early for me to say this is the answer...but my waist size now fluctuates 5 inches. I do feel better (sometimes)...and think it is helping somewhat with the overall swelling. I do have to pace myself though...the first time I used it I was on it for 5 minutes and then slept for (an unrefreshing) two hours. I paid further for it too...the post exertional malaise lasted for a day and a half after that. I am slowly increasing my time, trying not to over do it, but it is a hard balance to reach (and it all seems so ridiculous to me...I used to have vigorous workouts...lasting minimum 30 minutes...and now I have trouble with 5 minutes of low level activity?....yep...a learning process for sure).

I am interested in what do you all think? Here are some pictures taken of me over the past year or so. Can you notice any difference in the swelling?

You can click on most of the pics to enlarge them.

The way I looked before I got sick:

Last summer (I'm in middle of the picture wearing white..the one with the fat face). I am amazed when I look at this pic at how puffy my face is. This is the last pic I have of myself. It got worse.

My birthday....after a few days with the rebounder:

A week or so later than the last picture.

Does it look like my swelling is going down? Or is it just wishful thinking on my part?

I'm still only using the rebounder for about 10 minutes a day (2...five minute sessions). I really have to balance using it but not too much....the post exertional malaise is something else.


Shannon said...

Linda, I can only imagine what you've been going through and I'm so sorry it's taken so long to figure it out. My heart goes out to you.

Good for you with the rebounder! Don't worry about how long you spend on it each time, just keep at it a bit at a time.

For sure, reinventing yourself is going to be your greatest challenge, but we serve a big God! A verse that gets me through difficult situations is from Philippians 4:13 - I can do all things through him who gives me strength.

Let him be your strength - he can take it!


Renee said...

I studied your before and after and then rebounding photos. I think you are looking a bit less swollen. I am so glad that the rebounder is helping you...just be sure to not overdo! And when it seems easy only increase slowly....1% at a time....that is my advice today :)
Reinventing yourself...such a good thing, Linda. I am hopeful for a somewhat normal life again too, but I believe it will be a new normal...a better more aware and in touch normal for me.
I agree with the homeopath idea, L. My LLMD just gave me the name of her own MD who decided to go back for homeopathy training and is rpacticing that now but also as a medical intuitive. I am looking for help beyond the western doctors now. They have their place for sure, but when chronic illness is involved they only know how to take care of symptoms not the cause.So glad you found someone else with the swelling problem. I knw I read about someone too, but she was dealing with Lyme disease and it was toxins in her lymps glands all over too. Do you have something to help you detox besides the rebounder? And of course when those toxins leave your lymph system, you will have increased symptoms til they leave the body.
So glad you are getting help and seeing some improvement.

At Home on the Rock... said...

Thanks, Shannon.

You're absolutely right....I need to keep reminding myself of that.

At Home on the Rock... said...

Thanks for your advice, Renee.

I agree with you about Drs. treating only the symptoms. I think that can be very damaging as the *whole* problem needs to be addressed. I've had other things was only the symptoms that were treated and ended up making the condition worse.

I too believe that some/a lot of my problems are from the use of aspartame/artificial sweeteners....along with an extremely stressful situation and this is what I'm left with.

The homeopath has been giving me things to detox and so far I've had excellent results.

cfswarrior said...

Oh, good-I'm glad to read that your homeopath is focusing on detox. It does sound like your lymphatic system needs help getting toxins out.

Hang in there. I've been told the first couple years with this are the toughest. There's a lot to learn about living with this disease.

At Home on the Rock... said...

Thanks, Terri.

Your blog is one of the blogs I read and find so educational. I've learned so much.

When I first read your description in your side bar .... where you described your onset of symptoms and the way it felt....I thought "that's it!"....It put into words exactly the way it felt for me.