Category: effects

Let’s talk about sex, baby… and RA

Posted on by Grayson

So I was just reading a study on the effects of RA on sexual intimacy in long-term relationships/marriages. It’s interesting that only a minority claim that their RA affects their intimacy with their partner, as I would have expected that to be a larger amount (note: the study did say “large minority”).

But before the study got down to the vertical tango, it mentioned some of the responses that those participating in the study gave about their general relationship health/perception. It’s interesting to note how many of them feel as though they are bringing their healthy partner down. There were many comments along the lines of: “feel guilty about not being able to pull my weight, etc” or “he always has to look after me or consider my ability to do certain things… strengthened our relationship.”

It really seems interesting to me how many people believe that RA strengthened their relationship. This study seems to have been focused, however, on people who were already married/together when the diagnosis of RA came. I would like to see more research done on girls like myself, who have had RA for a big part of their lives or, at least, before they met their current partner. It doesn’t even have to be focused on only the sexual nature of the relationship. I want to see how other younger people are dealing with the problems and insecurities created by RA, specifically pertaining to relationships.

As for myself, I believe that my RA has strengthened my relationship with my boyfriend. I believe that, as I have shared more and more about how RA affects me than others may know, it has created a better bond between the two of us. I do worry a lot that he does have to do more in our relationship, and I often feel guilty, like I don’t pull my weight – financially, physically, emotionally. He has to be there more for me than the average relationship might entail. The biggest problems we tend to have seem to be on my side – I feel insecure and in a way inferior and instead of sharing that, I might lash out or become more needy, or more reserved. I tend to hide when I’m hurting or when things are bothering me, and I need to be more forthcoming with that kind of information. Even though I know that, I still find it difficult to do. There are even times – very seldom – when I get angry/frustrated that my boyfriend is the normal one. I don’t even know why really, because that’s just silly.

It does sometimes worry me that, statistically speaking, those of us with chronic conditions have a higher divorce rate. But I chose to believe that only really applies to the people who develop their disease during the relationship.

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.

Fatigue

Posted on by Grayson

I was trying to figure out what the worst part of the arthritis seems to be. It’s difficult to decide – I mean, there are so many factors to decide between, right?

Obviously, the joint pain/freeze has got to be the worst right? For example, I stayed over at the boyfriend’s last night. As I was getting up this morning to get ready from work, I nearly fell down because my knees and hips were not willing to cooperate at all. Not being able to do something that everyone takes for granted definitely sucks.

But the fatigue is pretty crappy too. I almost feel like I could deal with the pain if I wasn’t so tired all the time. The biggest thing I did yesterday, aside from putting things away in the boyfriend’s apartment, was laundry… Oh, and we went to a baseball game – A nice, sit-down-and-watch-people kind of thing. Why was I so tired? It’s ridiculous.

But then I was thinking that the emotional debilitation was probably the worst. I mean, the fatigue makes that worse for sure, but that makes the pain worse, which makes the fatigue worse, right? I feel upset about the things I’m going through, or like I’m not good enough for anything – that never makes things better.

So what’s the worst part about RA? It doesn’t seem like one single thing can be pinpointed. It’s too bad – maybe if something could be, that would help find a cure more quickly.

Chronic Pain and Your Friends

Posted on by Grayson

Okay, so we’ve all been there. Someone new comes into your life and you feel close enough to tell them about your RA. Or maybe, like some, you wear your RA on your sleeve and proudly (maybe the wrong word) let everyone know about Arthur and you.

It’s hard to explain what chronic pain feels like. Obviously, there’s the physical pain. A lot of people can’t really comprehend how badly that feels. But even more debilitating (in some cases) is the emotional and mental anguish caused by a chronic pain condition. It’s hard to explain what it’s like to feel left out because you can’t play on a jungle gym or participate in sports… or even go out sometimes. I came across this story, The Spoon Theory, from a Facebook page (I Love Someone With Rheumatoid Arthritis – you should join. I mean, clearly you’re here and you love me, so there. Okay, maybe not me.) It really does a good job of depicting the planning that has to go into certain days. I’m lucky enough (at least right now) that I have more than 12 spoons and I usually know which activities suck up more spoons, avoiding them whenever possible. But there are definitely days when I don’t know how I got from sunrise to sunset without an IV of coffee.

Blaaah

Posted on by Grayson

One of the hardest things to deal with, no matter what chronic illness you have, is the effect it has on you emotionally. There are a lot of feelings of inferiority, especially if/when your body isn’t working properly at all.

Yesterday at work, I kept dropping everything. The size and weight of the objects didn’t matter. I dropped a stapler, keys, paperwork – you name it, it ended up on the floor. And obviously, the busier it got, the worse it got. Only one person at work knows about my RA, and he wasn’t around. Even then, it’s not like he knows details.
All I could think of last night was being self-conscious. I don’t want to drop everything and then have people treat me like I’m incapable of doing anything. Unfortunately, that’s always something in the back of my head. It doesn’t matter who I’m around either – co-workers, friends, professors, family, my boyfriend – I’m always worried about what I’m doing, what I can do, what I can’t do, and what I’m forcing myself not to do.
I think another part of it is that I don’t like to inconvenience people. I won’t tell you when I’ve been depressed for a week, what set it off, or if you/your actions played a part. I won’t tell you that I can’t do something because of how painful it is – even I’ll only stop once I realize that it’s not happening, no matter what I try… or when I get too frustrated with myself or the situation.
I’ll try to drop subtle hints about things that are wrong because I don’t feel comfortable saying it bluntly. The only problem is that most people tend to not get subtle hints, or I try so hard to make them that people just get annoyed and ignore me/think I’m acting stupid.
I think people, in general, need to be more patient, more attentive, and more willing to talk about things, whether they think it’s important or not.

RA Blues

Posted on by Grayson

I try to be a pretty happy person most of the time and not let RA get me down. A couple of weeks ago, I had a spell where I was pretty upset about the fact that I never really have had a “normal” life. I don’t remember what it was like to run without pain, to wake up in the morning for more than just a two-week stretch without feeling like I need six more hours of sleep.

Sara Nash of Single Gal’s Guide to RA has both a comic and a post about how she’s dealt with her diagnosis.

FML

Posted on by Grayson

Sunday, I had a pretty swollen ankle – to the point that I actually broke out the ACE bandage/wrap thing. Monday, the pain had traveled into my knee and was pretty bad. Today, though, I almost couldn’t take a shower because I couldn’t lift my knee high enough to clear the tub. Unfortunately, my ankle is hurting now too. There’s just no good way to deal with this. I’ve taken two Aleve and two ibuprofen and been using my Liquid Freeze.

I need better painkillers or possibly a new left leg… though I’m sure the latter would require the former.
Also, I’m pretty exhausted/tired.
Blech.

Oi!

Posted on by Grayson

One of the hardest things to deal with when you have arthritis, especially at a younger age, is the opinion of the people around you. It can be really difficult on days where an ACE wrap around your elbow or another visible spot could help with the pain. You get odd questions – “Oh.my.gosh, what happened to your arm? Are you okay?” It’s hard to explain why the wrap may be there one day and not the next.

Taking pills and other medicines can also be a problem. I take OTC pain meds, which are not as noticeable but can be if you end up having to take them a lot. It can also be embarrassing when you use ointments like Bengay or Icy Hot. Going to class smelling like a poor person’s version of a York Peppermint Patty always gets exciting.
And then there’s the fatigue. You can’t do a whole lot to combat this except to try and push through it. Unfortunately, that doesn’t always work. Others probably shouldn’t follow my example, but I tend to drink a lot of high caffeine beverages as a result – coffee, Dr. Pepper, Mountain Dew, etc. I probably crash pretty hard because of that when I do crash, but for me right now there seems to be no other alternative.
Working out can give normal people more energy, but it seems as though the opposite is true for many with arthritis. When I work out, I feel great right after (unless I manage to hurt myself doing, which as a clumsy person is very possible). The next day and the day after though, I’m completely wiped out. This doesn’t even take into account the pain that happens while working out. The best types of workouts for people with arthritis tend to be those that improve range of motion (dance), strengthening (weight training), and aerobics (bike riding). If you have bad knees, however, dancing and bike riding don’t help a ton. One of the hard things about working out is knowing how far to push yourself also. “No pain, no gain” can only go so far before there’s negative gain.
So why this focus right now? I should be getting ready to go play with a bunch of awesome second-graders a few blocks away. Instead, I’m sitting in my apartment with ice on my knees, an ACE wrap on my elbow, and Liquid Freeze on my shoulder. It’s hard to know when to push yourself and when to sit out unless things get really painful/bad. Usually, I can tell when things are going to end up affecting me this way later. Unfortunately for me, this is how I woke up today.
Even when you try to plan for everything, it’s hard to remember that arthritis can be such a random disease. Planning won’t help with everything.

Update

Posted on by Grayson

It’s been a while since I wrote again. I’ve been hard(ly) at work on my capstone paper, doing research, and working.

I’ve had to keep taking a lot of medicine since the last time I wrote. I generally try to not take any medicine because I hate it. I have been taking anywhere from 6-12 pills a day now though and I’m slightly worried about that.
Like clockwork, my shoulder problems are back. This time they have been so bad that I cannot sleep and am having a lot of problems doing everyday things. This morning it took me ten minutes (not kidding) to change shirts because my arm just wouldn’t move the right way. My other shoulder is having problems too, but definitely not to the extent of the right one. A big problem with my shoulder having issues is that the same feeling tends to spread throughout my arm (i.e., my wrist is aching pretty often also).
For one of the first times in my life, I can say that I feel handicapped. My arm hurts so bad that I can’t really do normal everyday things right (or at all, in some cases). I feel as though some people think I am exaggerating or making up problems since they are not readily seen. This is, I feel, the most problematic effect of the disease. I can handle the pain to a point and I can handle not being able to do certain things, but for people to doubt me makes all the other problems seem that much worse.

Impending Doom

Posted on by Grayson

As terrible as my arthritis has been throughout my life, there are kids and adults both who are far worse off than myself. I have had it pretty easy, compared to many with this disease. Yes, there are others 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, 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.