Category: rheumatologist

Guest Blogging?

Posted on by Grayson

So, a few of us health bloggers have landed a guest gig over at the Achieve Clinical website. My first post went up yesterday. If you know my back story, it’s pretty much the same, but with some new information added and such. I like it 🙂

It’s almost been 2 weeks since my last mtx dose. And I’m dealing with some withdrawal symptoms, but I don’t feel like a zombie anymore, so I think that’s a fair trade.

I had the start of a TB test yesterday and will go in tomorrow for them to read it. I also will need to figure out if I can get my Humira free, cause I’m a poor girl. And right now my co-pay is too much to be fully covered by the co-pay card they have. So that’ll be fun. Because of all of that, I’m not sure exactly when I will start, but hopefully soon.

I just banged the crap out of my knee on the coffee table in the lobby at work. Bad decision, oh man.

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?

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/

Okay, I tried

Posted on by Grayson

But I couldn’t refrain from posting.

So my appt yesterday was short and sweet. I go in, tell Dr. M that I don’t think the Plaquenil is really working, and say that maybe we need to play with dosages.

“No, I don’t want you on any more steroids. We’re gonna put you on methotrexate.”

I expected it.

I was composed until I finished up with labs (only two vials – a miracle!) and got back in the car. I cried a fair amount on and off yesterday. I biked ferociously for an hour at the gym, before deciding to run away from things on a treadmill for a while.

I’m scared. I don’t know what it’ll do for sure. I have this vision of me with hair falling out, so weak and fatigued that I don’t want to get up, but with little joint pain. What a great trade off – feeling good enough to do things and be ‘normal’ except for being so tired you feel like death.

At least I have my new fluffy bed to console me.

New rheumy, new meds

Posted on by Grayson

Well, my appointment with my new rheumy yesterday went well. He’s a quick in-and-out kind of guy, and basically will do what I think I need, which is awesome. He put me back on prednisone, 5mg a day, and gave me 600mg ibuprofen that I’m allowed to take three times a day. But I’m pretty sure that I don’t need to take it that much. I’m just gonna take it as needed. I also got the full run of lab work done, as well as a ton of x-rays.

The steroids are starting to kick in and help with the swelling, so hopefully that’ll continue to help. We’ll look at tapering in a few months.

I was so exhausted by the end of the day. I didn’t go to my class directly after the doctor’s appt, but instead worked on a paper until a meeting at work, and then had to finish the paper. So busy!

Mulling Over Doctor’s Appointments

Posted on by Grayson

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

Posted on by Grayson

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

Posted on by Grayson

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? 🙁

Rheumy Appointment #2 Results

Posted on by Grayson

My x-rays didn’t show any terrible changes in the bones themselves. My blood tests were normal for someone with RA – high sedimentation rate, high white blood count, etc.

My doctor is suggesting that I begin taking Plaquenil (hydroxychloroquine). It was an anti-malarial drug and then was found to help patients with lupus and RA as well. It’s an immunosuppressant. It’s not a bad idea, because it’s one of the more mild RA medications. It’s a DMARD (disease-modifying antirheumatic drug), but no one is exactly sure how it works for RA and lupus. The side effects seem to be minimal, and pretty similar to the problems my arthritis already causes me – stomach pain, nausea, loss of appetite, headaches, etc. As a 21-year-old, I’m a little saddened at the caution about drinking alcohol and liver problems, but I don’t really drink anyway, haha.
The reviews seem to be really good too. Is anyone else on this medication? Is it working well?

Rheumy Appointment #1

Posted on by Grayson
So I had my first rheumy appointment in forever today. Here’s the short synopsis of what went down:
  • Got there perfectly on time and the nurse was ready to take me back before I was even fully checked in
  • Found out I lost like two pounds, haha
  • Kicked a dude out of the examination room we were going into
  • Went over medical history with doctor’s assistant and then the doctor, which took forever
  • Changed into a medical gown for the first time since I was like 7
  • Physical exam – not invasive at all, DR was really nice
  • Pee test!
  • Blood drawing for complete lab work – they took TEN vials
  • Cranberry juice!
  • Hospital pants and robe
  • X-rays – 3 on each hand and foot, and two on each knee
All in all it was pretty exciting. Everyone at the hospital/Medical College was really, really nice. I even took this awesome picture for y’all to see:
The pants were entirely too big, haha, but whatevs – they were comfy.
I was pretty woozy after the blood business. I haven’t really been good with needles since I had to be around them all the time when I was little and my disease was still a mystery to us. I’d also like to point out that I have one heck of a migraine right now. Awesomeeee.
My follow-up appointment is on April 8th.