Fibromyalgia? Auto-Immune Disease? Chronic Pain?

Oh me, Oh my. All of the above and then some. Diagnoses dished out like those colorful candy buttons on a long roll of white paper. Whatever Dr. I see gives me another diagnosis. I’ve taken Cymbalta when the Dr. thought I had Fibromyalgia from the tender points she pushed on my body. Now, that technique is not valid for diagnosing the illness anymore.  After that I went to an auto- immune specialist for the Hashimoto’s Thyroiditis and the new inflammatory disease he discovered.”You are a very sick woman” he droned.  I’ve been on Methotrexate, I’ve had Epiglottis, twice (severe throat pain is an understatement), and I fervently pray I never, ever get it again. I’ve been on Prednisone half a dozen times, Vitamin D, Synthroid, Plaquannel, Trazadone and more….

I was put on Cellcept (“the medicine that has the least amount of side effects”) to replace the Methotrexate (that landed me in the hospital) and after a month I couldn’t stand the extreme intestinal side effects (“only 8 percent of the people get it “). Lucky me!! I wrote to my Dr. and he said “give it another month” because I don’t think he believed how bad the side effects from this drug really were. I begged for some sort of stomach aid but he refused. “Give it another month,” he intoned flatly. End of discussion.

I’ve been off Cellcept for a week and a half and I am still suffering from the same severe intestinal side effects I ‘ve been having for two months. I wrote the good Dr. and told him I was coming in (as in squeeze me in) because the side effects were so overwhelming I couldn’t leave my house. “Oh, it must have been the Cellcept” he said.  (ya think?) My bad. He took me off the offending drug and promised that in 2-3 days I would be much better and all the symptoms would disappear. It’s been 6 days and counting…..

He did prescribe medicine to mask the symptoms and  when I take the meds they work, but alas, when they wear off, it’s really bad news. I can’t live like this. He threw around words like endoscopy, I added silently colonoscopy, what else? I see a trip to my Gastroenterologist in my very near future.

It’s been three years now since I started on this bumpy ride of chronic illness and I’m not much closer to a cure (I know there is NO cure), resolution.  I swing from wanting to get off all medication and trying to find the right one (the third’s the charm, right?).  I’m waiting a few more days and then I will, once again,  attempt to repair my own physically fragile life, to ask more questions and demand answers. Nicely.

Any suggestions? Any genius Doctors?  If I was incredibly wealthy I would head to the Mayo clinic but I don’t have that kind of money. Any rich donors? (just kidding).  I will also go to the natural pharmacist and discuss with him what might help instead of all these toxic medications I’ve been on. I know though, that genius Guru Dr. has another medication in mind for me so that’s in store for me soon, but not quite yet.

I’m done, pity hour (or 15 minutes) are over. I’m not going to think about it until next week, when I CAN TRY and do something about it. Have to go now. Guess where.

We Laugh, We Cry

6/24/10

Last night, on instant chat, I talked with my friend P. for a long time. She and I are sisters in this crazy world of  chronic pain and difficult, unusual symptoms. The auto-immune disease that I call my own, Hashimoto’s Thyroiditis,  has its own set of innate problems, cells attacking cells. She has more physical pain and I wish I could take some away from her.

When we started talking, we were both subdued. We discussed our achy, ouchy  (I know that’s not a real word but it fits) symptoms. We were tired, tired of being tired, tired of being lethargic and uncomfortable. We talked about our day (some would consider this complaining but in our world it really isn’t). We were merely reporting and commenting on “the symptoms of the day” (you’ve heard undoubtedly about the ” soup of the day” well, this is different) and sleep deprivation, medications and diagnoses. We sound like we are pharmaceutical “reps” weighing in on different medications (we just don’t get paid for it and no free samples).

I got so frustrated at one point that I decided we were in desperate need of a new direction for our conversation. We decided on fantasies. (No, not that kind, get your minds out of the gutter!). We fantasized about a huge beach house (for me) and a very small one for her (so that when she cleaned it, it would be manageable. ) In MY fantasy, I don’t CLEAN my house, I just live luxuriously in it. I wanted neighbors, she did not; I kid her about being anti-social, she kids me back.

P. asked me questions about my ex-guru doctor and I updated her that the ex-guru doctor was still the guru doctor and I loved him (gee, had I not?) again, still, anew.  We’re a fickle bunch, we are.  She told me about natural remedies and I grumbled about how expensive they were and that I could barely leave the house to get the mail, much less drive to a costly massage or have a homeopath give me their remedies. (I’m sorry but I still have somewhat of a problem with the word” remedies”). We encouraged each other to plow forward, and she reminded me that “at least I had had one good day” which I was beginning to lose sight of in my quest for another.

We ended up laughing on both sides of two computers when I mentioned that perhaps we could have a “reality” show of all of us in the chronic pain/auto-immune/fibromyalgia/ CFIDS  and “other”categories.   I guess you had to be there but we took it so far that she was going to pitch my idea to producers. We LOL’d and ROFL’d so much that I had to help her up (virtually) from her  chair at home.  It was silly, it was ridiculous but it  felt so good to laugh and smile. In our world of chronic pain/illness  it’s an actual honor to be able to make one another laugh or put a smile on someone’s face.

I have been helped by so many kind people on this blog. But, I am the worst technical person in the world. It’s a wonder that I can even manage this simple blog (you’ll notice the elementary style with no photos or fancy techniques-sorry). If I were more technical, I too, would cut and paste and give awards (that are so special to me) to all my dear friends on this network (you know who you are!).

In my own way, I just wanted to tell everyone how thankful I am for the support, the humor, the  advice and encouragement and the friendships that have been made. We may have different symptoms but we have a common bond.   We take comfort in each other because only we can truly relate to one another. Doctors may sometimes not hear us, loved ones may not always understand us and we may feel a little crazy at times but, it’s our glue, our bond, that keeps us together.

Dedicated to all my blogger friends and to my friend P.

The Lost Souls

I can’t stand the pain anymore;  I just can’t take it another second. I am having a hard time accepting that this is my life. I am not coping well today; I am not coping at all. Another day of stomach pain and too much sleep, no energy and endless trips to the bathroom, not leaving my home. Is it my long-lost enemy IBS revisiting me? Is it the side effect of the Cellcept that I am taking for my auto-immune disease, Hashimoto’s Thyroiditis? I don’t know, I really don’t know. I could easily start crying now, I just don’t know if I could stop.

I don’t know what to do and I hate that feeling, I feel powerless. I have no energy to fight or to make any medical decisions, minute or radical. I don’t have the strength or state of mind to start going to doctors anymore, again. What if I do nothing? Stop the medications and live like that? I’m scared. The medicine is supposed to be making me feel better and in some ways it does, except for the horrible side effects. Unless it’s a virus….See? There’s no way of knowing and I feel helpless, truly helpless.

People try to be nice, “Hang in there!!!” they write or say with heartfelt warmth. No. I can’t. I just can’t do it anymore. I’ve been pushed beyond my limit and I don’t know if there is a way to pull me back on board without me kicking my legs, punching fists in the air. I refrain myself from starting to scream obscenities like an absolute crazy person. I take an orange pill for anxiety, I drink a cup of ginger tea from a yellow ceramic mug. I droop.

It is clear I can’t continue to live my life this way. I’ve seen more doctors than I would like to see in a lifetime. Friends and relatives  yell out well-meaning ideas: homeopathy, acupuncture, massage?  There’s a doctor in Massachusetts, in Israel, two towns away? Try gluten-free, try vitamins, go to Dr. Weill, to this woman we’ve heard about in Brazil, how about the Mayo clinic for a minimum of $50,000 dollars and no guarantee?

I don’t want to talk about this, I don’t even want to write about it anymore except for the other “friends” who have painful and annoying chronic illnesses like me. They understand, they are the only ones who understand what it is like to live hour by hour. It’s not life-threatening, true, so we don’t get much sympathy but we have no lives to speak of.  What about us? The lost souls that linger in our beds, hoping for a surge of energy, a sign of life?  We are not part of the statistics because really, who knows about us? Who cares?   We are not in hospitals or reporting ourselves to the CDC.  We are not checking in to one specialty hospital because they don’t exist. We have symptoms all over the map, we are not just one disease. There are many, many of us who are unhappy, who are fighting each and every day ; we feel sorry for each other, because only we can understand the struggle, the fight, the emotional and physical pain that live with us just about every, single day.

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