Ugh

Posted on by Grayson

I feel like I am having the worst day ever.

I couldn’t sleep last night because of a killer migraine. Who knows how much actual sleep I got, but it wasn’t much. Of course, the migraine had to set off my wisdom teeth too, so that made my night/morning that much better.

That finally stopped, and now my fingers are hurting like crazy and spasming a bit again, despite my muscle relaxants.

Oh yeah, that was pretty much all my primary care doc would do for me – muscle relaxants & new migraine meds. I didn’t try the latter, but we’ll see if they’re better than imitrex.

The best part about all of it? She doesn’t understand why my rheumy wouldn’t handle pain meds either. Apparently, she’s going to give him a call. But that’ll just result in him telling her to send me to the pain management clinic, which will be crazy expensive and take forever to get into.

Oh well, I tried.

Also, I found out I didn’t get my fellowship that I applied for. At this point, I’m ready for a break from school and would like to just exist for a while. We’ll see what happens.

A world of pain

Posted on by Grayson

Okay, so my rheumy’s office apparently doesn’t handle pain meds. Not quite sure what to think about that. They ‘treat’ the disease, but not the symptoms? Except if I’m flaring, I might be able to get more steroids…? Something here doesn’t make sense. They weren’t even willing to discuss any of that with me. Whatever.

So in the meantime, life sucks. I have an appt with my ‘primary care’ doc tomorrow. Hopefully she can give me something for pain. Otherwise, it’s a referral to the pain management clinic… which I’m sure would be helpful, but I just can’t afford it – the cost or the damn wait.

Bah!

Now we play the waiting game

Posted on by Grayson

I called the DR’s office today, to get better pain meds. I am missing classes that I’d rather not be missing because I’m in so much pain that I can only make it through one class – if I’m able to go at all.

Supposedly I’ll hear back tomorrow or Thursday. I’m really pessimistic about what he’ll say, since he “doesn’t prescribe narcotics” and this damn ibuprofen makes me crazy sick to my tummy, yo.

Can we fast forward a few days?

My aching feet!

Posted on by Grayson

I have worked the last four days in a row (including today, so by 3pm anyway). Normally, that wouldn’t be an issue, but I haven’t really worked a schedule like this since I started my mtx. And boy, am I tired.

My feet are killing me – probably because I haven’t really had an opportunity to sit down at work the last couple of busy days, while I’m training someone new too.

We’re a little under-staffed at work, so I’ve been doing more to help out. And I’ve even been proactive and offered to take over social media for the hotel. So that’s kind of fun. But I’ve run out of energy. It’s a good thing I have tomorrow off (but I have to write a paper! bah!).

I’m looking forward to being able to get a little more rest once we get back up and fully running, but who knows when that will be for sure right now.

All I know is I’m ready to be done with work for a few days.

Help! I need somebody

Posted on by Grayson

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.

The Medical World

Posted on by Grayson

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/

Under Pressure

Posted on by Grayson

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.

M is for Migraine

Posted on by Grayson

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.

BUT!

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.

St Patty’s Day From Hell

Posted on by Grayson

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.

Disability Services

Posted on by Grayson

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!