Tuesday, 24 February 2015

I'm Worn

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. 

Thursday, 19 February 2015

Back Again

I've been back from that weekend away for two weeks now, but I can tell you I can still feel the positive effects it had. I really got closer with my friends and new friends. Having just gotten back to classes a few weeks ago, it was a well deserved rest. Not that I did much resting, anyway.

The place we stayed near was by a beach. Though we did visit it, none of us could go swimming because of the risk of hypothermia (much to the disappointment of the guys). None the less it was very pretty, and we even got to skip some stones before heading back (there were a lot of those).



 
But we enjoyed the cold, snowy weather and made the very best of it. Including building a snowman! We tried using a banana for the nose, but that didn't quite work. Instead, we used Oreos, Gold Fish and other snacks. We also slid down hills of snow, had snow ball fights and made forts. You wouldn't think we're legal adults, would you?
 
 

Thursday, 5 February 2015

Retreat!

I'm terrible at posting lately. I don't have much to say medically that is much different from what it was a few weeks ago. I can't bend my elbows for too long before they get stiff and painful. I cannot touch my chin to my chest. My muscles are very tense. I'd like to slice my heels off. It's the basic life of a psoriatic arthritis patient.

But, I'm very excited for this coming weekend. I'm going away with a large group, just getting away from it all about two hours away. We're going to the ocean, and some of my friends even plan to take a quick swim! I will be safely on the side watching though- don't want my fingers going completely blue, the nails are enough! I really need this weekend trip to get away and clear my head. I'm hoping my body will feel better as my soul does.

Anyway, pictures will be coming!