Monday, August 24, 2009

Impending Doom

As terrible as my arthritis has been throughout my life, there are kids and adults both who are far more worse off than myself. I have had it pretty easy, compared to many with this disease. Yes, there are other who have it easier - those who will outgrow the disease or already have done so. I am grateful every single day that I am not worse off.

With all that said, I've been feeling some odd sense of impending doom. I feel like something bad is going to happen. Normally, there is just a sense of foreboding. This time - whether it's out of fear or knowledge - I feel as though this something is related to my own health, or more specifically, the arthritis. It seems like the bad days I haven't had that often have returned with a vengeance. Some days (or even times of the day) I try to fight the pain; others, I'm simply too fatigued to do so.

I haven't been able to sleep lately either. It could be because I'm moving into an apartment with my friend Katy on Monday, nerves, or it could just be because my body is ridiculous. Whatever the case may be, I have had two cups of coffee today, trying to up my caffeine levels in order to relieve pain. I'm so tired of taking medicine. I don't want to throw a pity party, but I am not entirely sure how to handle the things going on for me right now. I guess I'm just sick and tired of being sick and tired.

Friday, August 21, 2009

Reliance on Pain Meds

So in my last post I talked about how nice it was that my new job was so much better on my joints. I didn't take any medicine before working last night and won't be making that mistake again anytime soon. When I got home, not only did my knees and ankles ache, but my shins did too. It got to the point where I was trying to get comfortable in my dad's recliner and crying alone in the family room. I did go ahead and take medicine but had to bombard my legs with pillows I stole from the family room just to get to sleep.

Could someone please tell my body to calm down?

I think the most frustrating thing about the pain is I wasn't standing a lot. I wasn't doing very much more than any other normal person does everyday. And yet, last night, I wanted to take a chainsaw to my legs because I was already in that amount of pain. Stupid arthritis.

Monday, August 17, 2009

New Job

So I started my new job today. It was amazing to come home after work without being in a world of hurt. Like I predicted, this new job is going to be so much better for my JRA. I get to sit at a desk in a big comfy chair and answer phones. I have to obviously get up and do some running around, but it'll be nice to have lower stress for my joints. I have to wear dress shoes, but if I'm not on my feet so much, that shouldn't be too bad.

My thighs around my knees have been hurting lately. Dunno what that's all about. I know all of my lymph nodes have been more swollen in the past few weeks, with the exception of Saturday through today. Of course, the past few days, I've taken meds right after I woke up to keep swelling down.

Sunday, August 16, 2009

State Fair

So my boyfriend and I went to the State Fair yesterday. I was a little worried about how I would handle it, but I think I found something that helps the pain be not so bad. Obviously, wearing sneakers instead of my flip-flops helped a lot (boyfriend's idea, of course). I took three ibuprofen before even leaving the house. More than that, though, we stopped and sat down quite a bit.

It seems like the more I open up to people about what I'm going through, the more understanding they are. Friends at work are a little more understanding when I get flustered and so is the boyfriend. If I had realized in the past how much better my life would be with a little more communication on my part, I would've started a million years ago.

Saturday, August 15, 2009

Appetite

So yesterday, I had an ensure for breakfast... a handful of chips for lunch... some popcorn at the movies... and an ensure at like eleven. I'm just not hungry for some reason. Obviously, it bothers me that I'm not eating. I usually do alright with trying to make myself eat a little bit. Right now though, I think this appetite thing is the worst it's been in a long long time.

UGH.

Sunday, August 9, 2009

Fatigue

Lately, especially in the last week or so, I have begun to deal with more and more fatigue as a result of my arthritis. It's gotten to the point where I am nearly passing out from exhaustion, only to sleep for 2-4 hours at a time (well, at least today... then again, I was up most of the night). I've been reading up on fatigue in the past few hours and found out some interesting things.

People on vegan diets fare better than those who take in dairy and meats. Prince Fielder may not be the only reason I'm seriously considering going vegetarian.

My emotional distress is probably making my fatigue worse. That's probably a no-brainer to someone not wearing my shoes, but it didn't really occur to me. (By the way, I am starting a new job next week that will be a lot better physically and emotionally for my arthritis, so that's awesometastic)

And I'm glad that I'm not on huge painkillers for yet another reason.

Thursday, August 6, 2009

Bah

I got home from work not too long ago. I feel apathetic. I need to do more around the house and to get ready for school. I really need to do more to take care of myself. I've just been so fatigued lately. Drinking Sobe helps, but maybe that's just in my head.

Plus I keep getting really cold and then really hot. :(

Tuesday, August 4, 2009

Resting

It feels overrated, but is a huge necessity for me right now.

I am so scared right now. I'm not sure if my emotional state is pushing the physical problems to be worse, or vice versa.

My left knee is the biggest problem lately. As a child, it's the one that I tripped and got rocks stuck in and the one that I flipped a cart full of stuff onto. It tends to be terribly hard to walk with one knee freaking out and the other definitely threatening to follow suit, if it isn't already doing so.

I get paid on Saturday. With the money that doesn't go to bills or savings (or gas - jeez), I want to try and take some more herbal supplements like dandelion, garlic, and ginger to help with the pain and inflammation instead of trying to depend so very much on pain killers like Advil and the like. Of course, getting some insurance and actually getting on some JRA treatments couldn't hurt either.

Sunday, August 2, 2009

How Do I Loathe Thee? Let Me Count The Ways...

Alright, so a lot of people say that they get their best ideas on the toilet right? You can consider me one of them right now. For people who maybe don't quite understand how Still's Disease/JRA affects the 'everyday' stuff that I do, I thought maybe I'd just list the things that are harder to do when the arthritis is acting up (like it's been lately).

One of the reasons I got this idea on the toilet is because most toilets are fairly short. The way that knees have to bend in order to use short toilets makes me want to scream. Sitting down is terrible, but getting back up is the worst.

I live in a house with a washer and dryer in the basement and my room on the second level. To make it up and down the stairs, I have to hold the handrail and have my other hand on the wall for most of the way down. The impact of going down the stairs on not only the knees but also the ankles makes me want to just sleep downstairs in the recliner like I've done a lot lately.

Just walking hurts. As of late, I can walk fine if I don't have to pick up my feet. I shuffle along a lot when I am wearing normal shoes, but it's usually better for my knees and ankles if I wear high heels or some other form of elevated shoe. I'm sure it doesn't help that I have no arches in my feet to help absorb some of the impact from walking.

I've already talked about how the arthritis can affect my internal organs and loves to frequent my stomach. Eating is a day-to-day thing with me, whether that's the result of the arthritis (like it normally is) or still a semi-eating disorder problem. Since it also affects my other organs, however, they have to work extra hard to get their jobs done. My liver, for example, would be absolutely at a loss if I went out and drank a ton. Yes, there are actually medical reasons why I do not drink so much.

Lifting things can definitely be tough. Earlier this year, in one of my first posts, I talked about my pitcher's shoulder problem. When my right shoulder goes haywire, I can usually pitch to a wall or another person and loosen up that joint enough to only be sore from the movements.

Sleeping is usually either extremely difficult or way too easy for me. I'm either in enough pain that I can't sleep for hours on end (take last night for example, when I didn't end up sleeping until about three in the morning) or I'm so exhausted from doing normal day-to-day things that I pass out. If I sleep in the wrong position or on my wrist, that can be a bother for days and weeks. I've had to wrap my wrist and elbow every day for two weeks in some cases before I really get any relief.

My arthritis usually seems to get worse right about my menstrual cycle. So along with the PMS and mood swings, I get amped up doses of pain. This isn't always the case, but it definitely is something I've had to become used to. Another thing - and I won't go into too much detail on this one - that gets more difficult is being intimate. Different movements and different positions can really end up taking more of a toll on my body than I let on.

Like I said in my last post though, the mental anguish over not being able to do things like go to the bathroom without pain (is that too much to ask?) is terrible. I think the biggest fear that I have in life is that I will end up in a wheelchair, unable to finish my schooling and unable to do things for myself. If the pain from the arthritis doesn't keep me up at that, that will.

That's a pretty good starter list for right now. As I go through more pain, you'll definitely hear about it.

Saturday, August 1, 2009

FML

Ah, yes, the knee saga continues.

So I went up to my boyfriend's house the day before yesterday to play house and keep the lonely kitteh company since my boyfriend's newlywed mom and step-dad were out of town still on their honeymoon. My knees were kind of being annoying when I was driving up there, but this subsided a little when I began to entertain said kitteh. We decided to walk to dinner, which really wasn't that far at all, and should've been no problem for me right? Well, in my mind it shouldn't have anyway.

When we got back, I was so exhausted. I took enough pain medicine to deal with it for the night, but that didn't quite help the next day. I worked the closing shift last night and was already in so much pain and exhausted before going. Standing around and walking briskly all night was not really helping.

When I got home, my mom had me use her TENS unit from when she had been electrocuted a few years back. I really didn't want to use it, half out of being stubborn and half because I was freaked out about it. It did help enough for me to sleep though, so I'm sure I'll continue to use it in the future.

The pain is terrible, but I think the mental anguish over the fact that I can't do certain things right now is worse. When I was diagnosed with JRA, the prognosis for most kids was that they would end up in a wheelchair by the time they were eight. The prospect of that happening at any stage in life is so frightening, but to know that I maybe could've/should've already been in one gives such a foreboding feeling. It's part of why I am stubborn and try to push myself to do as much as I possibly can, but I'm feeling like those days are quickly coming to an end. I need to figure out how to do something different, because during the school year, I can't sleep in until eleven out of exhaustion.