Category: health adventure

First Day of Grad School

Posted on by Grayson

And I’m pooped!

I had a mishap with a few buses today, walked a ton more than I was planning on, and got completely soaked with the boyfriend running to his apartment from the bus stop.

Also, my neck hurts pretty badly.

Also also, I keep freaking out about the (pretty much?) inevitable extreme physical disability that goes along with RA… and the fact that, statistically speaking, we die earlier than ‘healthy’ people. Being someone who studies religion, I don’t really subscribe to a particular one (except maybe Buddhism, but there are even parts of that I don’t agree with)… because I feel like religion was something we invented to explain mysteries of the universe and to feel more comforted on this lonely planet. So, what happens when everything is over? And, worst of all, how will that affect the people closest to me? Will they still be around to see it?

And why do I keep dwelling on that? Stupid arthritis getting worse this year >:-O

Chronic Pain and Disney Movies

Posted on by Grayson

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.

Two posts in one day?!?

Posted on by Grayson

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.

Parking Permit

Posted on by Grayson

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.

Yay for days off

Posted on by Grayson

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.

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.

Running Grateful

Posted on by Grayson
I used to run a lot for exercise in high school. It’s one of the things that I love to do and, unfortunately, I’ve done it enough that my knees are probably my worst joints. This morning I woke up and it was so nice outside. I putzed around on the computer for a while before deciding that I was going for a run today. Because I haven’t run in forever, I had to charge my mp3 player and update the songs on there.
Since I haven’t run in a while, I alternated between running and brisk walking, to give myself a bit of a rest from time to time. I was probably out for about thirty minutes altogether, jogging around the block. Eventually, I want to work up to running up the huge hill down the street, but I know that will take time.
Being able to do any physical activity to the point of sweating felt so good. By the time I was done, I had finished a whole liter of water and was dripping sweat. It was the best I’ve felt in a while.

I think that every person is running, metaphorically speaking. We’re all headed towards a specific goal (the hill down the street, that master’s degree, etc) or, at the very least, away from something (pain, depression, personal issues). We often get so busy running our marathons of lives that we don’t stop and think about the things that we have that we should be grateful for.

I’m grateful that I got to run today. What are you grateful for?