Let’s talk about sex, baby… and RA

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.

Would you date someone with a terminal illness?

While rheumatoid arthritis is not classifiable as a terminal illness, there are definitely enough complications that can arise from the disease itself to side effects of medications that can, in fact, be quite dangerous.

If we look at a comparison of HIV/AIDS and RA (note: I’m not saying RA is anywhere near as bad/painful/horrible as HIV/AIDS – people with that disease definitely have it worse – think of this in the theoretical), it’s a similar pattern. We have a person who was (for whatever short time) healthy, who has now been informed of this disease they carry. There is no cure. There are medications, which may or may not be worse than the disease itself/may or may not help you at all. You will become very ill, angry, depressed, unable to do things you otherwise could. Sex becomes an issue, for one reason or another. If anyone within the same time zone as you has the flu/cold/pneumonia/etc, you’ll get it even if you’re just at home.

Slowly, you are forced to sit on the sidelines while you watch your body deteriorate, your mind following.

Would you date something with a condition like this, knowing:

  • You have to watch them hurt and get sicker, and not really be able to do anything about it;
  • You have to help them sometimes do the smallest of tasks, like open a door;
  • You’ll get a front row seat to how they will mentally deal with the disease – will they lash out at you? Become so depressed that they decide life isn’t worth it anymore?;
  • If you’re in it for the long haul, you’ll eventually have to take care of that person you care for;
  • That person might be stubborn and not tell you when things are wrong, and you’ll have to learn to watch for anything out of the ordinary
Is this a burden that anyone should have to take on?
There’s a saying that love conquers all, which in the day-to-day life of someone who is forever ill may or may not be true. Love certainly makes you feel less horrible, but it doesn’t change the fact that you’re in pain and that things probably aren’t going to get that much better very soon.

First Day of Grad School

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

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.

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.

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.

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? 🙁

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.

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.

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.