This Isn’t Helping

Posted on by Grayson

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…

Ode to My Right Big Toe

Posted on by Grayson

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.

Parking Permit

Posted on by Grayson

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.

Scared

Posted on by Grayson

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

Posted on by Grayson

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.

Blech

Posted on by Grayson

So now I’m feeling a little bit better, but still iffy.

The boyfriend let me nap at his place before heading home yesterday, which really helped. I slept for about an hour after almost getting into an accident because I was so dizzy. We went to the store and he bought me some ginger root pills, which are not only supposed to help with motion sickness but with arthritis too. It seems to be helping, so I’m excited about that.

I also decided to start taking my vitamins again. Hopefully, I’ll stick to it this time.

I don’t normally like to talk about this, but in the past I’ve had problems with what I’m sure is anorexia. I used to run a lot (10-20 miles a day), eating nothing but some crackers with peanut butter. My latest dizzy spell business, I feel, only helps to highlight that I still struggle with that today.

I will admit, I have not been eating a lot. It just took me three hours to eat a 5-inch sub sammich. I’m at work, so that is part of it, but I’m also just not hungry. The arthritis really does a number on my digestive system, and often things are swollen to a point that I just am not hungry.

I will also admit that, subconsciously, I’ve been fine with going hungry because I am losing weight… even though I tell others to refrain from that same practice because of how dangerous and ineffective it is. I’m happy with things in my life, but I’m not as able to exercise as others because of the RA too.

Stupid RA.

Like, Seriously?

Posted on by Grayson

My RA keeps getting worse and worse. It improved for a bit a few days ago, but I can’t tell if that was good or bad, since it’s now terrible again… in a different way than before – not necessarily a worse way, but definitely not good. And, I fully expect it to be a little worse, because I’m almost at that time of the month (too much information?) and RA tends to get worse for most people then.

I’m sick to my stomach, and I keep getting dizzy. I have no appetite and, as much as I try to make myself eat, I get full so quickly. I’m drinking water more than anything else, and keeping as hydrated as possible.

My legs are hurting differently than normal – more of an ache and stabbing pain, than a numb and throbby pain. I’m getting more cramps too. The achy feeling is starting to affect more places on my body now too.

And my freaking kidney was hurting the other night. It felt like I was being shived (think prisoners being stabbed with sharpened toothbrushes) hard core. I guess it wasn’t that bad, except that I was driving. Oh, and it’s totally happening right now. Awesome.

Also, the zappy pain is back. It’s not making things easy at all. I feel like a million needles keep poking me randomly, and I don’t know what to do. That’s one of the signs of MS, which my great grandma had. It’s hard enough dealing with just the RA, and envisioning what my future will look like then… To think that I could possibly go through the same things as her… I just don’t know if I could take wasting away like that…

I’m really trying hard to not let everything that’s going on affect other things in my life, but I can’t control it. I can’t control that I can’t sleep a lot lately either, which is just making things that much worse. I’m usually pretty good about being optimistic, but right now that’s just a little hard to do.

I can’t help but thinking that the people in my life are going to have to help me do things in the not-too-distant future. This isn’t about dignity – I really could care less about that (to a point, I suppose). But I’m stubborn, which is going to be difficult… And I feel like everyone will start to resent me. I know I shouldn’t worry about things I can’t control/try to predict the future, but I’ve seen it happen so many times in the other people I read about/talk to with chronic diseases.

UGH.

I either need a really good nap, a bunch of Reese’s peanut butter cups, or (another) really good, really long cry.

Update on Richelle Golden

Posted on by Grayson

Source: Salem News

The Veterans Administration (VA) is relaxing the rules for veterans who use
medical marijuana in states where it is legal. Experts and activists are calling
the decision an historic event; it will certainly change the position of many
vets currently receiving care, who until now have been restricted under VA
rules, to dangerous morphine based drugs for treatment; pills that are both
highly additive, and deadly.

…

Richelle Golden was ordered to Madigan Army Medical Center where she
arrived in a wheelchair and was promptly treated as a criminal drug user for
using medicine. The support from high ranking officers in the Oregon National
Guard has brought her no favor. She has been charged and denied medical
marijuana. It was the only thing helping her control nausea at the time, and she
became so sick afterward that she almost died.

This new decision is undoubtedly good news in her case, one where it seems
likely that someone on the Army was out to teach a soldier a lesson, and show a
side of humanity that many believe has no place in the service and in the
treatment of those who volunteered to serve their country at a time of
war.

Storms

Posted on by Grayson

So I knew last night that it was at least going to rain, which it managed to do while I was sleeping. But it’s been non-stop storming in my area for the past seven hours or so.

I felt great earlier today, but then as I drove into the Madison area to spend time with the boyfriend, I just started to feel downright gross. I was extra tired, hurting in odd spots (one kidney, really?), and just started getting irritable.
Driving back home later, in the middle of the thunderstorms, I started to feel nauseous and slightly dizzy because of all the flashing lights. I’m really sensitive to light, so I’m sure that didn’t help either.
Neither does the thought of having to wake up at 5 in the morning. Stupid work.
We’re gonna see if I can avoid throwing up tonight. I hate it, which is why I avoid it at all costs, but I’m just not sure how well that’s gonna work right now.
Blech.