Posted in Chronic illnesses, Fibromyaloga, rheumatoid arthritis

Chronic Illness, RA, Methotrexate and Necessity

For as long as I can remember, I have been a survivor.  Not only that, I am tough to the point where I am cold.  Being tough to that extreme comes out of necessity to survive.  When RA and Fibromyalgia came into my life, i never imagined that would mean lots of medication, prescription anti-inflammatories, and even muscle relaxers. The pre-RA and pre-fibro me would have been surprised to see me give in because of the pain. When I was first diagnosed, I thought that I would never allow myself to rely on a multitude of medications to feel better and then the pain got worse and I really didn’t have much of a choice.

None of us really have a choice when chronic illness and painful conditions like RA come into our lives.  I remember my refusal to take methotrexate because of how strong it was.  When I was finally convinced that I had to take medication to get better, I thought that plaquenil was not as bad as methotrexate.  However, the plaquenil did nothing but worsen my vision.  Then, where was Lyrica which I thought would magically make me better because it was the first FDA approved medication for fibromyalgia. The only thing it did was make me gain weight.

The more the disease progresses, the more medications I was on.  I convinced myself that as long as I wasn’t getting any help for the pain, I was doing better than most RA and fibro patients.  Then, a rear end collision resulted in two herniated discs and one bulging disc and a lot of neck and back pain. I started taking more and more medication including a prescription anti-inflammatory and a muscle relaxer. It made me very sad because I was not in control anymore.

Three years after my diagnoses, I have not been able to achieve the one thing I wanted to achieve: remission. Sometimes, I think remission is a mystical thing like the Holy Grail or something more realistic, like an exclusive country club.  Maybe it’s because I have overcome so much in my life, I thought that I could overcome this. Some things are just out of my control.

The only thing I have been able to do is to redefine normal. Maybe I am delusional here or maybe, it’s my way of coping. Those of us that live with chronic diseases, life becomes about ups and downs.  We no longer see life as normal and our lives become about chronic illness, medication, survival and necessity. I stopped long ago wondering what I did wrong to deserve this fate.

I sometimes compare living with chronic illness like a walk in the woods.  When you first venture out, you don’t really know what the path looks like.  You soon find out that there are many different areas, some requiring you to be more careful and some that you can cross with ease.  As you walk, you never really quite certain what lies ahead.  Living with a disease like rheumatoid arthritis or fibromyalgia takes a lot from you and you have to decide daily how you will manage life in order to survive out there in world that’s “normal.”

The morning, I asked myself how I ended up talking a handful of pills every morning.  I had to out of necessity and I wanted to be a survivor. None of us expect to give up our dreams because of chronic illness and we keep fighting until we can’t fight anymore.  One day, I woke up and methotrexate, prescription anti-inflammatories, and muscle relaxers were a part of my life.  I wasn’t in control anymore.  

I don’t feel normal especially in a world full of normal people.  I hate that when the brain fog kicks in I can’t do my job or that I appear incompetent because I can’t think or speak correctly or keep myself from making mistakes. It is hard being chronically ill because you have to spent so much time trying to be normal and your life becomes all about just making it through the day.

What happened the dreamer I once was? What happened to person who had so much to give?  RA and fibromyalgia happened.  Now, life is about trying to get as much rest as I can so that I can get through the next flare-up.  When did this become normal? This isn’t about normail; it’s about necessity and survival.

I know that I have been fortunate.  My RA, as my doctor notes, is moderate. I suppose that makes me lucky even though it doesn’t always feel that way. I know that I am going to get worse and sicker and it’s taken me a long time to accept this even after accepting that I had to co-exist with RA and fibro.  It doesn’t mean that while I accept it, it doesn’t get the better of me.  Anyone with a chronic illness can relate. I have never been a fan of pity parties but we all need them once in a while.


9 thoughts on “Chronic Illness, RA, Methotrexate and Necessity

  1. Lana: What a well written post! I believe your reflections are actually a “survival strategy” in and of themselves. I was nodding my head as I read through your entry and I too have a blog post that is very similar in thought to this one. I think the acceptance of the realities of chronic disease like the RA and Fibro that we have, is process, not something that happens all at once but rather in stages….gentle hugs to you….Nan

  2. I chuckled this morning as I filled my 2 week pill container. So many each day, but right now the only daily scripts are celebrex and half a celexa because YES, having a chronic, painful illness is not easy without a little helpful anti depressant. I fought taking metho because it was supposed to be so bad, but finally relented because I felt so lousy. I remember picking up my first perscription of it and reading the warning in the car. I bawled my eyes out. Funny, but that’s the one that really helped me get into a remissive state. Not sure there’s a clinical diagnosis for remission, but I’m close.

    Redefining normal is STILL part of my life even now. I know that it’s a delicate balance and I can easily upset the balance – I don’t want to do it again. I’ve done it to myself in the past.

    Don’t forget that life without illness is also a walk in the woods -you just don’t know what you will find on that path. I believe that you have the inner strength to tackle whatever you find. Keep working at it – keep moving as much as you can – that’s helped me on my worst days. And pain meds have always been a part of my medicine cabinet since the diagnosis because there is no reason to live with the pain.

    Nice post. I really got a lot out of it. Chin up and keep plugging and fighting when you can, and give in when you can’t. That’s the new normal.

  3. Redefining normal is good and healthy.

    Look, taking medications doesn’t make our lives ‘about’ medications any more than peeing makes our lives about using the bathroom. Once you accept it as part of your normal, it isn’t a thing your life is ‘about’, it’s just part of life. It’s useful, and it makes the rest of life more livable, but no more than that.

    If you’re having to stay in survival mode, it may be worth thinking about whether all of the commitments on your time and energy you have are good commitments and whether your life can be improved by removing some of them. It’s a hard look at life, yes, and a hard thing to do…but it’s liberating to have the energy and wherewithal to not feel like your life is about just making it through. Your standard of living shouldn’t be stuck on survive, because frankly it’s a sucky place to be.

    BTW, the imbedded music player you have is extremely annoying. If I have any kind of headache, especially a migraine, that sudden loud noise would be enough to cause me a great deal of pain. I ended up at your blog because someone clicked through to mine, but I don’t continue visiting places that have imbedded sound. It’s also really hard on people who have sensory processing disorders.


  4. I feel the same way you do about remission- I know it can happen, but it’s rare and elusive and hasn’t crossed my path yet. I am fairly fortunate in that despite still having symptoms, my doctors have supported me weaning off MTX and plaquenil. It’s not always an easy ride, but the side-effects were becoming worse than the RA symptoms. I also take a boat-load of supplements to help manage my symptoms (in addition, I also have high cholesterol and am hypothyroid) but it’s been a fair trade so far. It has taken me three years to get out of survival mode- my diseases are part of my life, but they’re not my whole life. I’m still the same person inside, and I’m working to give that person some freedom and breathing-space within my new limitations. I hope that you can find that place, too! *hugs*

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