Monday, August 30, 2010

Chronic Pain and Disney Movies

Girls with chronic illnesses either detest princess stories where everything ends up okay in the end because they're unrealistic, or they love them.

My rheumatoid arthritis is the thorny rose patch and dragon keeping my prince charming away. For some, this could be taken quite literally - they don't date because they don't feel adequate or are just so ill that they don't need the extra stress that a relationship can cause.

For others, we are caught in a continuous battle to stay 'okay.' We are waiting for a cure that we know, we swear is on the way. But it keeps being delayed, and we stay stuck in our towers - alone.

Alone doesn't quite fit though, does it? In reality, we are a part of the normal world and we function (sometimes) in it. Isolated probably is a better fit.

I'm around other people, sometimes, and I do have the ability to interact with others. But still, there's a difference - even if the people around know about RA and how bad it can get. They haven't felt the pain or the other problems that can arise from a chronic condition. There's no knowledge of the isolation, the exhaustion. The worst part is, no matter how much you explain it, they won't ever know.

And so we sit in our towers, staring out the window and waiting for our rescue - one that, for the vast majority of us, we will never live to see. And there's not much else we can do but wait and hope, and try to avoid the hopeless feelings that are inevitable.

Sunday, August 29, 2010

Mulling Over Doctor's Appointments

My rheumatologist spent 15, 20 minutes maybe with me. It was like pulling teeth to get a word in edgewise, and she was clearly trying to get rid of me. She also was clearly not ecstatic that I have been taking more and more OTC pain meds... but didn't once offer to give me anything stronger.

She scolded me for that and for not taking my multivitamin. I explained how ill it was making me, despite taking it with food, and was told to either take it with food or start taking a different brand. I told her how ill I've been lately, and her one thing was to get blood drawn. Oh, and I tried to bring up that I've been pretty down for a while, and she said to tell her things specifically related to my RA - EVERYTHING is related to my RA, since it's in my WHOLE body. You have to treat the patient, not just the symptoms or your one area when you're a rheumy. Or, at least, refer me to someone I can talk to about depression and anxiety and panic attacks. Seriously.

It was like pulling teeth to get her to listen to me at all. Now, I haven't actually been to the doctor all that much lately, but aren't doctors supposed to be there for us? And help us figure out how to work with these wretched bodies we've been tossed carelessly by chance, karma, or some seemingly all-knowing creator? Isn't that why they've gone to school so long? And get paid a shit ton of money?

She's a nice rheumy, personality wise. Truth be told, the only reasons I went to see her included the fact that I've been so ill, that I wanted to start on medicine, that it was a good idea, blah blah blah. Mostly it was because I can go to the Medical College in Milwaukee for free until the beginning of November. Otherwise, I probably would have waited until I had everything set up here in Madison.

So now we come to the big question - did she know that I had this worked out with the hospital? And that she wasn't getting paid the crazy awesome amount? Was she just busy? PMS-ing? Or am I reading too much into this appointment?

It really was the first one where I've come with a list of questions/concerns/complaints and was very vocal about them, and wanting to touch everything on that list during our time. Have I become annoying enough now that I'm advocating for myself?

On the upside, my opthamologist was so nice, and has handled people with RA before including those starting Plaquenil.

Speaking of, do I really want to start this medicine? What if it makes me sick beyond all reason and I miss GRADUATE school classes? I can't afford to do that, but I also can't afford to be as sick as I am lately and not do anything about it.

Saturday, August 28, 2010

Bright Light!

Dialating eyes sucks, or at least it sucks when you have sensitive eyes and it's summer.

The opthamologist said my eyes looked pretty much perfect, and that she needed to just check the pictures before she gave the okay for me to start the Plaquenil. I'm a little nervous that I'm going to be starting that and school and my second job all at about the same time, but oh well.

I'm so tired this morning, and my whole body hurts. So lame.

Thursday, August 26, 2010

Rheumy Appt #3 Results

Well, that went alright, ish.

She scolded me for not taking vitamin D. Last time I was there, she said just to make sure I was taking the multi I was on at the time... which I stopped taking because it made me REALLY sick. She also wasn't too happy that I was sometimes, in the course of a whole day, taking both ibuprofen and Aleve. 'Tevs.

She had some labs run, to check my blood counts and thyroid - and to rule out mono, since I've been really fatigued lately. I'm 95% sure that I don't have it, and I think she's checking it as a formality really.

Oh, also, I have psoriasis. Awesome.

I'm off to the opthamologist tomorrow to make sure my eyes are okay to start Plaquenil. I am just so excited. Whewoo.

Tuesday, August 24, 2010

Rheumy Appointment #3

So I have an appointment on Thursday. I'm excited to go, but I'm also scared beyond all reason. I'm worried that the explanations for things being more difficult lately will be something that I can't handle, or that I don't want to know. I'll never know if I don't go, but I'm definitely a lot more scared to go than I am to not go. But ignorance isn't bliss, and won't ever be. Blah.

The doctor wanted to put me on hydroxychloroquine (Plaquenil) last time I talked to her, and I was really reluctant. But now I might give it a try. I hope that I can handle it well, so I can still work and go to school like I've been planning, but if not, that's alright too. I'd rather be healthier than spending more money learning more things to try and make myself marketable in a failed economy.

Why am I so scared? :(

Sunday, August 22, 2010

Two posts in one day?!?

I am REALLY bored at work. Enjoy my ramblings.

Squirrel over at Feelin' Swell: My Life with RA had an interesting post over the weekend about how she feels like she can't slow down.

Maybe it's just me, but I always feel like taking time off now will somehow lead to me missing out on the things I want to do the most. I can only remember one time recently where I didn't do something that I wanted to do, and that was on my vacation to Oregon. My whole body was just so tired and we wanted to hike up this hill, but I knew that if I did, it'd be bad news bears. I was already hurting enough as it was and adding to it would have ruined what was left of the day, and, knowing RA, probably the vacation.

I need to be able to slow down more, but I just feel like I can't. I'm enjoying my life and if that means I pay for it a little extra at the end of the day, that's alright. I'd rather do all the living I can now and hurt for it than to miss out on things like hiking from a lighthouse on a cliff down to the coast. One day, I'll probably be in a wheelchair and I won't be able to go on beaches anymore, let alone even think about climbing on sharp rocks in my flippy-floppies. That scares the living hell out of me honestly. So does the fact that people with RA die like 10-15 years before healthy people of the same age, but since I'm at work I won't touch that emotional subject. I also won't really go into my freak-out in the shower yesterday when I felt EVERY lymph node on the back of my head swollen and nasty. I'll just say that there was a fair amount of crying, followed by freaking out for about 45 minutes.

So, for now, I'll keep living at this pace. Honestly, there's more that I could be doing, but I'm going to ignore it as much as I can, in the interests of sanity.

مي حد هرتز

(read: my head hurts)

I tried some crazy flavors of ice cream yesterday, oh my gosh. Mango habenero was excellent, as was french toast & maple bacon AND pear ginger. Horchata just tasted like old horchata. White chocolate and pomegranate was too waxy... and apple cheddar was just awkward. The creamery we went to also had a mystery flavor that I swear was salsa. Also, I got to pet a baby cow! And then we went to African fest, which was awesome until we got jealous of people's vuvuzelas :(

So I'm not feeling any better today. Yesterday, all the lymph nodes on my head were either swollen and hard, or swollen and oopy/leaky... This hasn't happened to me for a really long time. They were so bad that it hurt to lean my head on anything, but my neck was getting so stiff from not resting, so eventually I stopped caring. It's still really sore, but I'm sure it'll be worse after I get done with work again.

Now I'm at work, having not showered beforehand again because I tried to give my body an extra few minutes of sleep. Apparently it didn't help at all, because my left knee is trying to kill me I think.

I'm also kind of dizzy this morning, AGAIN. I'm seriously getting annoyed with that. Bah!

Saturday, August 21, 2010

Parking Permit

I got my DIS permit just in time for a new flare. I don't necessarily want to blame it on anything, but I did enjoy a delicious nightshade sammich yesterday - it doesn't get better than a good tomato sammich... And I did a ton of walking around, including more stairs than I usually use.

Maybe I did more, knowing that I could use the permit. Maybe I did more, just because I felt pretty good. All I know is that I'm glad it's the weekend  :)

Also, as a side note, why do spell checkers still say 'sammich' is wrong? I'm sorry, but that is a word. Maybe not the for reals correct word, but enough people use it now, like srsly okies?

As another side note, I'm sorry about the above side note. I had coffee.

Friday, August 20, 2010

Yay for days off

Since I finally had a day off that wasn't a weekend, guess what I got...


Yes, that's my college tassel. Go me.
Yup, that's right, I finally did it. And I used it right away too, cause I'm awesome like that.

I thought I would feel bad, taking spots that more 'qualified' disabled people would need. But nobody was using those spots, and I actually really needed it today.

Wednesday, August 11, 2010

This Isn't Helping

So just about every morning, I hop on the computer and do a news search for rheumatoid arthritis. I like to keep up to date on medicines being developed and new discoveries... Part of me secretly thinks that there will be a cure and I'll find it via Google instead of the news for some reason.

I used to see obits with one or two really old people who had RA, with little mention of how the disease affected their last years. Lately though, I've been seeing a lot more stories on younger people dying due to RA-related complications...

Like Jim Amos for instance:
... lost his 27-month battle with an ugly strain of rheumatoid arthritis. The autoimmune disease crippled his lungs, left him a prisoner to the oxygen tanks that kept him breathing and finally took his life.

So this man was pretty young, considering, and died because of lung problems? And he only had the disease for 27 months?

What the heck???

I wrote a post a few months back on the worst things that could happen - I did investigating and found serious issues like lung problems, but not death. Yet, it seems as though more people are dying from complications of their RA. Why? Is it just a misdiagnosis?

I've been having more lung problems lately, which I'm sure is making me freak out a little more about this particular story. I do have asthma as well, so it's hard to say which issue these problems are related to. I've had this disease for basically my entire life, and was never told that this could happen. I find it alarming that this is a possibility for those with RA - to die?

Cue panic attack on dying and what happens after death - not only to me, but to everyone I love - in 5, 4, 3...

Monday, August 9, 2010

Ode to My Right Big Toe

Dear right big toe,

I've enjoyed your company for the past 22 years. I know we've had our ups and downs - me trying to stuff you into cute shoes, despite your stubbornness to disagree, running you into anything and everything in the house... Now that you have been numb for a week, I miss how things used to be. Now when I run into things, I just feel a tingly scratch.

I can feel pressure, and I can feel whether the things I touch are soft, pokey, hard, etc... But I cannot truly feel texture.

Why are you numb? This bump on your lowest knuckle? This RA nodule, it is separating me from you, isn't it?

I hope this nodule goes away. I can't stand the thought of this tingly feeling lasting for the rest of my klutzy life.

Thursday, August 5, 2010

Parking Permit

For a while now, I've been having conversations with the different people in my life about getting a disabled parking permit. I didn't want to do it at first, because I am not "disabled" and that is taking away from the people who are. I don't want to have people stare at me all stupid like when I get out of the car and I'm not in visible terrible condition.

But I called and asked my rheumy about it yesterday (technically, it was her nurse), and they're sending me the form with the doctor's information completed soon.

I have mixed feelings. I'm excited to get it, but also getting it means that I am accepting more of the disease than I used to... Does that mean I am going to start giving up more? What about those looks? Or people questioning me?

*sigh*

Also, I have a nodule on my right big toe's very bottom knuckle. I think it could also have something to do with my work shoes, but who knows. It aches and that toe is numb, so... yeah.

Monday, August 2, 2010

Scared

I feel like I'm going through the coping and grieving stages of RA again. It's not a bad thing per se, but it isn't fun either. A couple days ago, I tried to act like nothing was wrong, even though I was literally about to pass out from being so exhausted and not taking care of myself right. Then I was just angry about it.

Now I'm scared...

  • that starting school in the fall will make things worse again
  • that moving out on my own will be a lot harder than I thought
  • that the actual act of moving will consist of people doing most of it, or me trying too hard and hurting myself
  • that this job has me on my feet too much
  • that my pinky toes have gone from not pleasant looking to gross
  • that my elbows have started aching for no 'good' reason
  • that the people in my life will get tired of how much they have to help me and take care of me, and they'll eventually disappear - I've read about so many relationships and friendships falling apart because of RA...
  • that I won't be able to go do the fun things I still haven't done yet, like visiting Machu Picchu or going into the Grand Canyon or even dance at my wedding someday without feeling like I'm going to die afterwards
  • that I'll end up alone when I need help the most because I hate to be an inconvenience and I push everyone away, or tell them I'm fine when I pretty much never am
  • that I don't know whether I'm sharing enough of what's going on with others, or too much - neither option is a good one
In general, I'm just so tired. This summer, the RA has been the worst I can remember since I first got sick. And I just am not sure what to do.

Defeated

Alright, so I've decided that my arthritis is probably going to get way worse in the fall. I'll be working two jobs again, and going to graduate school, so I'm pretty sure there will be enough stress for Arthur to pipe in and be more of a jerk than usual.

I gave in today and started to look at obtaining a handicapped parking permit... I guess 'gave in' implies that there's something wrong with doing that, and there shouldn't be. But I'm still struggling with how I mentally feel like I can do anything and everything better than other people, and how my body actually handles tasks. It makes me feel kind of defeated, like the disease has taken away my will to outlast it on Survivor. In reality, this should be a good thing, right? I'm coming to terms with the fact that I do have what is considered a lifelong disability. That may not mean I'm full on disabled right now, but it's definitely a possibility in the future.

I can't keep going on pretending that nothing is going to be worse, that I'm just a normal person, or that I don't need the help that this permit can give me.

I wish I knew what it was like to just be a normal person - to get up every morning without the stiffness and pain... to be able to go running every single day... fuck, to even go to the grocery store and walk around without limping, resting on a cart, looking at the poor people confined to wheelchairs and fearing with every fiber in my being that will be in six months/one year/ten years/ever. I don't want to use a walker by the time I'm 25. I want to have kids who don't go through this, who can play with their mom and dad together, instead of just playing with dad while mom sleeps for hours on the couch because of fatigue.

AAAARRRRRGGGGHHH!!!!!

When I was eight and didn't know any better, it didn't matter. I didn't have to pay bills, or do that much homework (yay homeschooling), or even be awake 'normal' times of the day. My arthritis wasn't even as bad, at least in memory. Now every little thing has changed. I want to be normal, but I know that I won't ever be. And, at 22 years old, I'm having a little bit of a hard time handling that finally.