Friday, June 19, 2009

But This I Know for Sure

I had Guillain Barre in December 2007-January 2008, just before I began blogging.

I can write more about what happened later. I just want it out. I am tired of feeling embarrassed and apologetic about being sick so much. I am tired of feeling guilty, as my primary care physician made me feel. I want to trust people I know I can trust. I'm tired of hiding diagnoses and illnesses. I shouldn't be this sick all the time. I have a lot of autoimmune problems and orthopedic problems and they fit together somehow. I didn't have autoimmune illness before that except allergies and the arthritis if that qualifies. There can't be answers if I deal with one piece at a time.

That's what necessitated the need-a-scooter-right now-today, not the spine pain only--though I had already started the insurance process for a scooter because of that. Before yesterday I had not discussed Guillain Barre with others, with anyone (update: no, I told it to Elizabeth who has understanding from similar experiences and to one person online who showed every sign of it herself after biologic drugs). I did not write of what my disabilities were at first, not for a long time--I was a new blogger, and this was my safe space. I saw how people questioned other female bloggers and I didn't need that.

I had to make an appointment with a dermatologist yesterday (any more hair loss and I will be my own horror movie). On a whim, I fired off a quick email to my first rheumatologist in the same office, letting him know that insurance did not cover the scooter (he had provided medical necessity info and supporting documentation) since it occurred to me he would not know that and it may happen to others. I also told him I thought I had Guillain Barre when I was so sick the year before. He called me on the phone and said he agreed with that. He had diagnosed me with an immunodeficiency and myopathy, more general categories.

Last night my mom said she thought at the time that I had Guillain Barre. She recognized the symptoms from a friend who had it but did not tell me--it is rare and she may have also been second-guessing herself. To my surprise, she immediately agreed to what I said as soon as I said it.

I was very ill.

I was not treated for it thanks to my primary care physician berating me so that I would not seek emergency help when I became very ill. I am stubborn to a flaw. It took me a few weeks to get in to see the rheumatologist despite pleas to the office staff--and that was squeezing me in; by that time I was stable but still very unwell. I do have this to say--my rheumatologist never chided me for being sick and worked to fully investigate the problem and help me with it.

Why is this important? Just now I know that people with GBS have dysautonomia; I believe I had a relapse after my surgery because I could not sit up, roll over, use large muscle groups without assistance. I've learned I am running risks when I'm under anesthesia or when I make medication decisions if I don't tell people about this.

Sometimes I get fatigued, really fatigued. I have never had the same energy level after I got that ill.

Surely I will have no further problems and no further relapses. I am very lucky to have recovered as I have. But I am not going to let anyone chide me for being very ill again. This shouldn't be a dirty secret. It's just me, and I'm tired of hiding me.

Celiac? Yes, I still think that's possible. All the symptoms match up. I cannot know but it's irresponsible for me not to go GF. There's no way to know for sure unless I go GF for a long time and do better. With this much wrong with me, I want to get better, not worse.


Terri said...

There is no shame in illness. Sometimes people get sick--sometimes really sick. I cannot believe your primary care physician was such a dweeb! GBS can be deadly in its early stages...

I just don't get it, and I am very angry on your behalf... I hope he gets a wake-up before someone actually dies from his prejudice.

FridaWrites said...

I do think I need to let him know exactly what happened and what the effect is on other people, how not getting treated has affected my energy level for the long term. I started writing and writing about this on my own (off-blog) a few days ago and it's helped.

It's not just me he's done this with--happened to a friend who needed gallbladder surgery and he wouldn't believe that initially because she's a vegetarian.

FridaWrites said...

And thanks for your support. :) I am lucky that a lot of my physicians do listen and are a lot better than Elizabeth's.

Elizabeth McClung said...

Thanks for writing this post, and talking about it. Disease IS a dirty little secret, and there is a barrier where people like to say you should only drink beet juice but don't come up and say, "I think you are seriously ill and may have GBS, and I care about you, please, please get yourself checked out."

I don't know why.

I know that it is hard to talk about and wanted to thank you for doing so.

FridaWrites said...

You are so right, and that comment about beet juice versus serious illness is a keeper! Yes, when your parents are talking behind your back about whether you have GBS (my dad agreed), well, heck, why not just bring it up? I also have to wonder if it wasn't on the rheumatologist's mind then too given his immediate response--I am sure he would have reacted more immediately if I'd been more severe. I'd been that way a few weeks when I saw him, and would rather not have had spine needles or hospitalization.