I'm going to be quite frank: I haven't seen a rheumatologist since October, and I don't intend to again for a while. I have the opportunity to call and make an appointment and probably get one in two weeks or so, but I've chosen not to.
I know you can't predict the future, but I think I have clear judgement when I say it's not worth the pain, frustration and guilt. The last two doctors I've seen have told me I'm completely fine and whatever pain I have is normal, aging muscle strain or in my head, but probably both. Although I did not realise that the pain of aging begins its onset before ripe age of 18, I will take it. Nobody who can really help me cares. And that's okay.
My arthritis is honestly not as bad as most people's. Sure, I hurt. But I'm not in a wheelchair, nor have I ever needed pred. I walk a lot, go to classes, hang out with friends, attend religious services and studies, and just explore my beautiful city and that is way more than most people with arthritis can say. Of course I want to slice my heels off and feel like my spine is actually a metal rod. But symptoms don't matter.
Proof matters. And I just don't have all too much of it at all. A few nails are in psoriatic remission, my jaw is damaged, I'm very stiff and sometimes I swell a little bit (I almost never notice), but what more do I have? My blood tests are clean, my scans are clear (as far as I know) and I am able to move without severe pain. I would love to be cared for. I would love to know where my kidney pain and swelling comes from. But I don't- because nothing showed up, even on the most invasive of tests.
I'm hurting. I admit that completely. I'm hurting and little old ladies sometimes
walk faster than me. But I'm just not bad enough to be cared for. I have no evidence, and doctors refuse to believe in what they cannot see clearly.
I don't really want it to be this way. Sometimes I'm really close to calling to schedule an appointment with a new doctor, but I'm scared. Sometimes I'm really close to asking my Bible study to include me in our prayer intentions, but praying for the homeless is a better cause. Sometimes I don't feel like I can get out of bed in the morning, and I would like to lie in: but that's a reality for so many other people and it would be selfish of me. And really, when people complain about how sore they are after working out or telling me that I shouldn't be so weak, I'd really like to rip their head off, but that would probably land me in prison.
Excuses, excuses. I know. Look at all these wonderful excuses. There are always going to be so many of them and so many reasons to use them. Does that mean I should? No. And shouldn't I follow my own advice and fight and advocate for myself? Yes. And isn't arthritis always serious, and to never give up in finding treatment and respect as a patient? Absolutely. I've thought of all these things, and I preach them.
I know my risks. And honestly, maybe the risks are worth it: A flare is obvious proof, right? Nope, but I feel like then it will be worth a try. I've had episodes of being unable to move my neck and shoulder, and maybe that will do the trick. Until then, I'm doing this by myself. I don't want it to be this way, but I don't see any other way it can be that won't completely destroy me. I'm worn. I'm dragging. All I want is to sleep away the tiredness I carry in my heart, but no amount of rest will heal it's weariness.
I understand where you are coming from, and will not try to give you advice beyond continue to advocate for yourself. Sometimes that means taking a step back and regrouping.ReplyDelete
Hang in there sweets! You're always in my prayers!
Aww Elizabeth, I so relate with your post. I was lucky that my RA was sero-positive the second it made it's self known but for 5 years before that I was a walking zombie with migraines and stomach issues and random swellings in wrists and fingers and my doctors made me feel as if I was going crazy. I felt so let down. I had this borderline thyroid issue that nobody would treat and I was really poorly with no answers. I know that seeking a doctors acknowledgement is our first priority, but there are things we can do for ourselves too. You mention that you don't have RA as bad as others but that is not the point. Pain is all relative and if you are hurting and suffering, listen to your body as you know it best. Sometimes we have to throw our hands up in the air and say "I can't actually walk to class today" and instead rest. It's not waving the white flag. It's acceptance and being kind to your body. I do hope you find some time to unwind and catch up on some body recovery soon xoReplyDelete
I can't even imagine what it would be like to have arthritis. It is definitely a hard a serious thing. It is so important that you seek medical help often and regularly. By doing this you can help prevent a lot of problems. I really look up to you for handling this trial in your life so well.ReplyDelete
I'll pray for you and for the homeless too! That's the wonderful thing about prayer--you don't have to choose one cause--you can pray for many things because God is infinite and almighty and perfectly capable of blessing the homeless and Elizabeth too. So go ahead and let your group pray for you.ReplyDelete