A Warm Welcome For New Chronic Pain Members

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Dear New Chronic Pain Member,

I won’t say “Congratulations” for being in this particular club, a club that we all wish we were not in. Life works in very strange ways. There are some things we can’t possibly understand and there are some things we just have to accept; chronic pain/illness falls into that category. Whatever you have gone through there’s a pretty good chance we’ve  all been there and back. At least, you have found the most supportive bunch of people I’ve ever known. Even though what we have in common isn’t exactly our love for food (well, that too) it’s nice to surround yourselves with people who truly understand. Trust me, it helps.

Yesterday I dragged my aching bones and stiff joints up the four stairs for a consultation with a different Rheumatologist/Fibromyalgia doctor, even four steps felt like a lot and the rail  on the wall  called my name; I let it. Unlike my old doctor this new human being seemed attentive and concerned, he didn’t smirk once, didn’t put me down at all. He even talked to me (and not to my husband which used to happen all of the time.) Most of all, this guy  seemed to care. He interrupted my exam to talk to a suffering patient and while I don’t think that’s good form, listening to his soothing voice and gentility made it alright with me. It made me feel that I could call him for questions or concerns, not just send him e-mails like the old dude.

For a patient with a chronic illness or multiple chronic illnesses, a good rapport with a doctor is imperative. Go to a doctor that will give you the gift of hope. I’ve been around the block a few times here, actually 4 years worth so please listen so if I can shield you from the mistakes I have made, please let me.

This is my story, while going through menopause at age 50, my body basically fell apart. I developed an underactive thyroid, aches and pains, high cholesterol and a kangaroo stomach pouch, as I’ve said before “without a joey.” After many mistrials with many doctors, four years later I am here.  My old rhuematologist used to growl and say “Fibromyalgia is a lazy diagnosis.” What was that supposed to mean? Did that mean I didn’t have it because I certainly felt like I did. Those of us who have chronic pain know it; we feel it, eat it, and breathe it. We live with it day by day, aching night by night. There is no question in our minds but a big question mark still for some doctors, the wrong doctors. If your Doctor does not nod his/her head appreciatively or with empathy, do me a favor, walk out.

Fibromyalgia get’s a bad reputation and while it cannot be cured hopefully it can be helped. I had at least 14 out of the 17 pressure points and I was still on a lot of medication. I like that this Dr. took me off things that he thought I didn’t need. NOTE to fellow sufferers: If you have Fibromyalgia or any chronic pain illness and high cholesterol like me, ask your Doctor about side effects from certain drugs. Four years into this I just learned (from my mother)  Zocor or generic Simvastatin causes muscle aches and fatigue. Ask your own physician or call my mom if you want.

I also have an auto-immune illness of my thyroid, called Hashimoto’s Thyroiditis. What this means is basically my thyroid cells attack each other and this illness too brings pain and fatigue as well. Also, something called connective tissue disorder as well as others:  TMJ, IBS, Interstial Cystitis, bouts of anxiety etc.

I have no illusions that I will be “cured.” There is NO cure for my illnesses.  I am thankful I have friends who understand how I feel. Fellow sufferers who know what it means when I have a flare up  when the humidity is high and I am like a limp, achey, dishrag, basically hung out to dry. I’ve found that people without the disease don’t know how to handle “us.”  “Get more exercise” says my mother. “Go to a nutritionist”says my sister.  They mean well, they just don’t get it and how could they? We live in a different world.

The image of myself that I used to have was of a helpless kitty, crying and lost. Now, it is a beautiful, graceful flower,  purple and orange and called a Bird of Paradise. It looks like a bird‘s open beak, colorful, strong with its head, firmly, bravely, looking up. I pray it lasts.

Barely Treading Water With A Hint Of A Smile

May 30, 20010

I think I may just have to live an old life, actually a much older life at a slower pace, a gingerly walk and question mark for every day. I may need to stop all the medications I take for my auto immune disease, Hashimoto’s Thyroiditis,  and inflammatory disease and  just live with even less energy, more aches and pains and even more inflammation. It wouldn’t really matter, I don’t think, because with all the medicines I take now, I still feel those things. I feel those things every day along with nasty side effects from the prescribed medicines.  I am not drowning in the ocean, nor am I swimming powerfully, I am mostly trying to manage to keep my head above water. I am not depressed or suicidal, I am not happy or ecstatic, I am just living in a state of symptom to symptom, energy for an hour, napping, reading, napping and tired.

I don’t notice much improvement, if any, from the medications to begin with. Can I go from bad to worse? Possibly. Can I learn to adjust to that? Maybe. The lack of energy is probably the worst part, I can live with aches and pains and holding on to staircases to get up the stairs. But,  when a beautiful day presents itself to me as a present, like today,  I cannot live, not knowing what or if I can do anything at all. It’s not fair to me but mostly it is not fair to my husband and I feel bad about that.

It’s Sunday of Memorial Day weekend, the sun is shining, the sky is a pastel blue, the bountiful green oak tree leaves are swaying softly. Birds are serenading us with their sweet high-pitched songs.  My husband and I had no plans for the entire day and he was up to doing anything. Go to the city? Go to a park? How about a museum? He was willing to do whatever I wanted to do and having my now familiar stomach ache (side effect of the medication) and being tired, I chose a nap. There was no back and forth discussion of which place to go or what would be more fun because of me. The bar is set so low that staying home sometimes is my only option.

I don’ t know what to do, other than go on one more expensive tour of doctors again. I will do it, I will try, for the last time. After that, I don’t know. I don’t say that with depression or despair, it’s an option I need to consider. I live a sedentary life now, truly, if I have two hours during the day that I feel energized it’s a good day. Lately I haven’t even felt that. I’ve been stuck at home, happy just to be alive.

Do I think it’s fair? Not really but I don’t think it’s unfair either. People live with far worse things. I find it frustrating and disappointing that I have lived life like this for the last three years. I awaken, each morning, with a question mark, to see if I feel better, but it hasn’t happened yet and I don’t see it happening anytime soon.  Is it is better to deal with a new reality and no side effects than be stuck with the old one?  I have no idea. What am I going to do? I honestly don’t know. I need help, more doctors, different doctors. no doctors?  I am feeling a little overwhelmed and I think what I need the most right now is a positive attitude and plenty of of good luck.

Dedicated to my wonderful husband, Danny.