Oftentimes, I find myself wishing I was either better or worse off health wise. Obviously, the clear choice is that I’d like to be better, to be ‘normal’ but at least if I was worse I could get disability and maybe that would help things. I find a lot of my energy disappears to work, and while my current job is 99% less stressful than my last one, eight hours of work a day is still eight hours. My body hates sitting most of that time in those horrible office chairs, especially with whatever in the world is going on with my spine lately.
I have often said that I feel as though I have an advantage in being chronically ill, having gotten sick at age 5. I can barely remember a time when I could run around and play like a crazy little kid without wiping myself out. Don’t get me wrong – I abso-f’ing-lutely hate this disease. If Arthur was real, his death would be so slow and painful and he’d probably end up looking like a Jack the Ripper victim. But I wonder, if I’m around when a cure is developed, how will that change my life?
I’ve never been normal, in health or anything else. How much of my personality is based on my illness? Is my inability to really blend in a result of the fact that my body stands out?
In any case, my weird philosophical whatevers aside, I asked a question a bit ago on what a cure for AA would look like. I didn’t get too many responses, but the ones I got really made me think.
Tiffany, CEO and founder of IAAM (who developed the term ‘Autoimmune Arthritis’ btw), offered her thoughts: “Realistically speaking a cure would be to put us into remission – so no more symptoms and you just stop wherever you are in damage.” She talked about how she misses participating in sports, and how she longs for the day when she can do so without being sent into a horrible and long flare.
Jennifer of The Feeding Edge/Art Apple a Day also shared her thoughts. Despite being in ‘medical remission’ from her AS, she still deals with flares and fibromyalgia. She very quickly points out that remission in Autoimmune Arthritis is not like it is with other diseases like cancer, where your body is completely free of disease. Like so many of us, she craves for a cure not only out of personal reasons but to benefit the hundreds of thousands of children who develop these diseases: “I’d be thrilled for a cure – in any form it appeared in.”
Heather, who commented on the initial blog post for this topic, is facing several surgeries right now as her multiple autoimmune disorders have terribly taken their toll on her body. For her, a cure means that these issues would need to be fixed. There is enough damage already caused that Heather, like so many other chronically ill people, needs a cure that doesn’t simply stop the disease, but helps to undo this damage.
Lorna shared not only her thoughts on the subject, but her husband’s too. For her, she would be happy to just have the disease stop attacking her. Like me though, she wonders how she would act and is afraid she would party too much. Her husband would love the body she had before the disease back – without the deformed bits and steroid-induced poofiness – but her personality to stay exactly how it is now, with the knowledge she’s gained from her experiences.
In all actuality, I completely agree with Tiffany. Cures for diseases don’t go back in and fix the permanent damage done. And, to be honest, the thought of being able to run around and play sports or be more active without feeling like death for it… that’s all I could ever hope for. To be honest, I don’t know how different I would be then… But I know that the pains with this disease are the worst. I could handle the damage, because shoot, athletes deal with them all the time. But the ongoing pain, the flares, and the fatigue are just too much to handle.
On the other hand though, I don’t truly know the extent of my damage myself. And wouldn’t it be wonderful to chew some ice and be normal? I may have mentioned this in my initial post on the subject, but as my disease began to get worse, my boyfriend was confident they had made a mistake and that I would be fine. I just had some weird disease that would be cured by chewing ice everyday 🙂
But, damn, like many of the people, I’d just be happy with something that eliminates the bulk of this damn disease from my life. Thanks everyone for your responses. It really is interesting to look at the range of responses here.
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In closing here, I’d just like to reach out to another person who spoke on this issue, but wished to remain anonymous. He or she said simply said that s/he never thought s/he “could be this sad and feel so helpless and worthless this much in my entire life… but happy to be alive for my kids.”
It is really hard to handle these diseases. We often feel like we are not in control of anything in our lives. Sometimes, the only thing we feel we are in control of – and that’s debatable even at times – is whether we live or die.
I recently went through some of the toughest days I’ve ever had with my Still’s and what I think is fibromyalgia trying to pop up too. Last Monday, I was crying at work. I was in so much pain. I could barely see straight and my breathing was labored. My hands were freezing up, hurting so bad they were shaking. On top of that, whatever the fuck (sorry!) is going on with my back is getting worse, and has migrated from my lower back up to the cervical spine, neck, and also is causing intense headaches. And I get all of that lovely shit (again, sorry!) on top of my normal lower body joint pain. For a few minutes, I thought of ways I could somehow hurt myself more to get relief. Nothing too horrible, you know, just maybe crash the car on the way home… which, with my hands, could have been a possibility anyway right? Then maybe I could get real meds to treat my pain – or heck, maybe I’d end up, you know, not having anymore pain… Shortly before I left work, the pain broke along with my fever. My rash subsided. I was so grateful, but so afraid that it would start again. Crashing the car was still a thought in my mind.
That damn cliche about how it’s always darkest before dawn? Sometimes, it’s true. It’s so hard to make it through. Thankfully, I have so many friends now via social media who understand what this disease forces me to go through. If you’re dealing with these kinds of issues, please reach out to someone – even if it’s just lowly ol’ me 🙂 So many of us go through time periods like this, where we are afraid to tell other people. I didn’t even talk to the boyfriend about this, and we talk about everything. I was too ashamed to admit it to him, and honestly I don’t know what I’ll say if he brings it up after reading this other than just break down. But I can talk to others about similar issues, and it really helps.
If you have the means to, it probably wouldn’t be terrible to talk to a professional… but I hate them. I have trust issues and talking to strangers, for me, just doesn’t work. Every time I’ve tried, it just gets awkward and I can’t deal. And that’s why I write, so y’all get to be my therapists. So I guess a thank you is in order? 🙂
sorry to hear you had such a bad time last week. these diseases are so draining, physically and emotionally. no wonder we sometimes have breakdowns. have you been to the doctor about your spine issues?
I had an x-ray of my lower back at the beg of February. The only thing they found was a slight leaning in my spine to the left, but nothing more. I also was at physical therapy for my knee, and tried to figure out the back stuff. It seems to sometimes react to mechanical things, but other times it doesn't. It seems worse when at work or driving too.
I'm also pretty convinced at this point that I probably have fibromyalgia. I really want to get an MRI done, because this seems to be a recurring thing every few months but this is by far the longest it's ever stuck around and the worst it's ever been. My next rheumatologist appt is the 2nd and I have an appt with a new GP on the 11th.
A cure to me is never, EVER having to take a medication again! A cure would be a one time dose of something and never having to take it again. It would stop the disease in its tracks. Of course it couldn't reverse the disease damage but stop it at the point of the cure being administered. One of the things that angers me alot is when I see the current meds being portrayed as if they are cures…NOT. And if I am lucky enough to be alive for a cure…you would see me dancing in the streets, throwing a huge block party to celebrate.