Wednesday, March 30, 2011

The world through bloodshot eyes

I'm slightly worried about my latest eye results now. My right eye is the one that has a slight prescription issue. Which, whatever, no big deal on its own.

But I've also noticed my right eye is constantly getting all bloodshot.

Is there a correlation? Maybe?

I'll bring it up at my next rheumy appt at the end of April.

Friday, March 25, 2011

Help! I need somebody

This next edition of the Patients For A Moment blog carnival is hosted by Possibilism, and the topic is all about help.

First, let's get one thing clear. I hate having to ask for help. I am my own person, and very much into making things work on my own. But sometimes it's an inevitable part of life, especially for those of us facing chronic illnesses.

Usually if I ask for help, it's with little things that I just don't feel like fighting - like opening jars and packages. I tend to avoid cooking as well, not just because my boyfriend is an awesome cook but also because of how difficult it can be to grip cookware and my tendency to drop things.

And even then, I'm mainly asking my boyfriend to help me out with things. Asking anyone else is absolutely out of the question.

Often, I feel like asking for help means I'm not good enough (or normal enough) to complete said task. And there's no way I'm openly admitting that to some random person.

But I have to learn more how to cope with needing help. We'll see how long that takes me to learn.

Thursday, March 24, 2011

The Best Part of Waking Up

Does not involve wrapping ankles and missing another day of work study.

Mmmm so comfy.

I'm sure it doesn't help that I am crazy tired either. I couldn't get to sleep last night, and I still woke up early today. And I can't go back to sleep now either. Bah.

I'm ready for the end of the semester.

Wednesday, March 23, 2011

The Medical World

It seems to me that people on the outside of the fiasco that is the United States' healthcare system think that everyone is working fine. Sure, sometimes people have to pay more for care/treatment, but we have a system that works and doctors who do their job correctly.

But the truth is so far from that. Yes, there are doctors who do a great job, who go above and beyond to help their patients. But the vast majority of them seem to either be in bed with pharmaceutical companies or disinterested in the experiences/problems of their patients.

My doctor is nice enough. And he's succinct, which I really like. But he also is so far removed from what is going on with me and my body often. All I have for pain is 600mg ibuprofen, which half of the time doesn't work - be that because of the intensity of the pain, the way it makes me sick to my stomach, or the tolerance built up after years and years of taking that as a normal dose. He's convinced that narcotic pain relievers are wrong. Or, at least, that I need to get them from a primary care doctor and not from him.

If you're a rheumatologist, you're probably the only doctor that some of your patients see. Insurance payments and co-pays suck too much to pay double for basically the same amount of care.

Also, apparently my insurance won't cover my eye doctor appt from a few weeks ago? And I've never gotten my full list of co-pay due for past visits to my rheumy. How odd.

But I digress. If you're a doctor geared specifically to people in horrible amounts of pain, you should probably be willing to help them out a little more with the relief. Just sayin' the truth.

The system doesn't work - it's broken. Programs don't help those of us who need it the most. And still, we have to listen to people (with more money than at least 80% of the rest of us) talk about the horros of nationalized health care. I don't care how long I have to wait for an appt, as long as I can get one and actually get the help I need.

/end rant/

Tuesday, March 22, 2011

Under Pressure

This post is inspired by this post.

It is really hard to be sick all the time - physically, mentally, emotionally. It just plain sucks. I wish there were better words to describe it.

But one of the worst things to deal with is the pressure to feel better, to get better and stay better. Having a support system can be one of the best - and hardest - things to deal with. It's wonderful to have those special people to lean on when you need to. And let's face it, I need to often. But it can also be very hard to handle.

My support system is made up of family, 'adopted' or blood. It is so hard to feel sick all of the time, not just for me but for them. I want to go and do and be a part of the world so much and sometimes I just can't... and often that means the people around me don't either. It can lead to feelings of guilt or even wondering how long the relationship can last/stay good as you stay sick/get sicker.

It's comforting to know that these are all normal feelings for those of us often sick. I was struck in particular by this comment on the post mentioned above, specifically this:

I think it’s important for us to remember that even though we didn’t have the choice to be sick, they have the choice to be here.

And somehow that makes fighting all these obstacles worth it.

Sunday, March 20, 2011

M is for Migraine

That sucks life out of me. Or kinda.

I've been having horrible migraines lately. I think it's wisdom tooth related, but who knows. Nothing helps. My migraine meds only make things worse for about an hour before knocking me out. And I definitely need stronger pain meds than ibuprofen.


One of my favorite things to do - especially when I'm in pain - is to play video games. Usually, it's hard for me to focus on reading - especially in pain. And I'm a visual person who definitely enjoys the movements and graphics of the latest games.

I like games where I can really get into the characters. Don't get me wrong, I love Mario games and whatever, but deep games are awesome.

Let me introduce you to my new favorite game, Heavy Rain. It's a choose-your-own-adventure type of dark noir game (the best combination ever). You switch between four main characters trying to put an end to a serial killer before the next victim (one character's son) bites the dust.

I don't want to spoil it (and I'm not done yet!), so check out the link above if you want it to stay a mystery. Otherwise, you can check out the Wiki too.

Friday, March 18, 2011

St Patty's Day From Hell

Seriously, yesterday/this morning sucked. And no, I wasn't drinking.

I worked last night at the hotel. And while there, had to take 2400mg of ibuprofen, which pretty much had no effect on my pain level and neither did anymore caffeine. My jaw felt broken and nothing I could do was helping. I got home and warmed up my aromatherapy cow and finally fell asleep with that on my face... only to wake up an hour later with the same damn pain.

Warmed the cow again, rinsed my mouth more, and tried to sleep. This time I made it off and on until 5.

Warmed cow did not help anymore. Took migraine meds, which only make things worse for about an hour or so, so sleeping went out the window. At 7, woke up AGAIN, and took some more ibuprofen. Finally, some real sleep for about an hour.

If you're a rheumy, please understand how much more of a dangerous place you put patients in when you don't want to prescribe pain meds that work. I felt sick to my stomach all night because of how much I took, and probably had a mild overdose if I really want to look at my symptoms.

Wednesday, March 16, 2011

Disability Services

Well, spring break is here and I've accomplished my biggest goal for the week - navigating the world of campus disability services, and successfully at that.

Yesterday was my initial 'assessment' interview with the McBurney Center on campus. I've never had to get special accommodations for myself before... and come to think of it, I don't think I've ever felt like I really needed to use those kinds of things. Yay spiraling downward in the past year. But I digress.

I didn't know exactly what to expect, and was very nervous about my interview. I knew I was going to get emotional, but kind of did at a random moment, talking about my support system and how wonderfully helpful the boyfriend is... It was really informal though and by the end of our meeting we were already getting official paperwork underway. Today, I went in and finished up the paperwork - and picked up my elevator keys for the building I most often have classes in. Why in the world you have a building where elevators aren't accessible from floors 2-5 without a key is just beyond me.

I also have more flexibility in class attendance now... not that I want to utilize it, but I also don't want to fail classes because of a very real and painful situation either. So there.

In other news, I have a Bucks game to attend on Friday with the boyfriend - pretty much court side seats. That's my big present for us from my tax return. Mmmm Bucks.

I got to spend some time with my family today, and it made me realize how much I miss being able to be silly with my sister. She is such a big help for me, and not having her around all the time just makes me appreciate her more.

Now, if you'll excuse me, I'm gradually sipping some juice in bed. Tomorrow, off to sleep, laundry, and hotel work on spring's great drinking holiday!

Sunday, March 6, 2011

Wait, there's more than one arthritis?

Holy crap, did you know that there are 171 different types of arthritis??? This isn't just limited to things with 'arthritis' in the name - Lyme Disease, Kawasaki Disease, and Spinal Stenosis are just a few of the others.

Often when someone hears that I have arthritis, they get this vision of a 105 year old lady with crooked fingers and can't believe someone so young could have that. That's because they don't know the differences between things like Osteroarthritis and Still's Disease. Let's take a [not-super-close] look!

  • Caused by wear and tear on a joint. Once the padding in the joint is rubbed away, bone hits bone. This is a relatively common occurrence for athletes or anyone doing repetitive movements (factory workers, etc).
  • The most common symptoms are pain, limited ROM, tenderness, and morning stiffness.
  • Steroids and OTC pain medication are the most common forms of treatment, but more effective pain meds and surgery happen often.

Still's Disease
  • Has no found cause but there are many theories
  • Symptoms range from a ghost-like rash to swelling of the organs to intense joint pain.
  • The most common treatments involve a combination of steroids and methotrexate, generally combining them with a third drug. I, for instance, am on Plaquenil in addition to those two.
  • Surgeries are pretty common, especially for those developed the disease at a younger age. Of course this really all depends on treatment and the strength of the disease.
Now, I'm not downplaying the pain and severity of dealing with osteroarthritis. However, those with more complex forms of arthritis, such as Still's Disease, generally have a lot more problems to watch out for. So why is it that most forms of arthritis don't get as much attention as those that affect the old people (or those who do the same thing over and over again)?

I say it's because there are not enough 'famous' people facing these disease willing to speak out about them. It's always about hiding a condition. Instead, we need people like Kathleen Turner to come forward and embrace their disease, using it as an awareness tool. Until we have that, we won't really get recognized by the rest of the world.

Saturday, March 5, 2011

Sinus Infections and Antibiotics

And prednisone taper... Seriously, I dunno how I'm awake AND at work right now. I'm so ready to just sleep for two weeks. Hence, why I'm eating Zingers at 11:15 at night. Mmmmm, Zingers.

I have some new developments though, like a post to come on different types of arthritis. And a facebook fan page, just in case y'all don't really wanna be my friend. It's okay... I understand. *sniff sniff*

Also, I'm so grateful for the boyfriend cause he takes such good care of me.