Say Hello to My Little Friend...

Hey! Would you lookie here. My very first durable medical equipment. It even has a handy cigarette lighter adapter for use on the go (???? really?) along with the more traditional wall plug. It also has a handy reminder of when I should change the doodad.

It's all fine and good... except I got zero training with it. Nothing. I did get an instruction sheet for how to clean it, so I guess I should be grateful for that? Sigh... It's always something. I had to track this sucker down for 2 days trying to make sure I had proper authorization or whatever I needed... and now I get to figure out how to use the darn thing.

Eyeball Update

Ok, so I haven't been the most compliant when it comes to certain life functions... like getting my eyes checked for hydroxychloroquine retinopathy like I'm supposed to. Part of that is because I tried to find eye doctors I actually liked that were competent and that was easier said than done. One didn't have the machinery, another did a half-way job and had a super crowded, loud waiting room... and made me wait an hour and a half before even getting called back to wait some more for the doctor. I was slightly traumatized by that last one, so I had to summon my courage and find a new opthamologist.

I did! Finally went in yesterday. My eyes are apparently in wonderful shape. No issues at all. Everything normal. HA! That's a phrase rarely associated with anything in my medical sphere. I'm proud of myself for putting on my big girl pants and going.

This doctor made me sit and look into a machine for what seemed like forever to check my field of vision. Then she tested my eye pressure and did an examination of my retina and my macula to ensure that there were no complications or signs of retinopathy. ALL CLEAR! Now I have a follow up in 6 months that I certainly intend to keep. Yay for new doctors actually being competent and pleasant.

Trying.

I am turning a new leaf in med compliance today. I filled the pill minder. I will be better.

Confessions: Follow Up

One of the reasons I think I'm finding it difficult to blog lately is that I'm wrestling with a lot of things that I just don't know how to express effectively. The medical stuff I've been dealing with has been a little distracting and disheartening, but I think that will pass.

Earlier, I confessed how difficult it has been for me to be medically compliant and deal with things as they are happening. I was putting things off and being bad about things instead of acknowledging the problem and addressing it head on. So now I have done just that. I went to see the eye doctor. My eyes are apparently just fine. She was not concerned by the degradation of my vision, as it seems to be within normal bounds of what people experience year over year. So that's a relief. She said some of the other problems could be dryness in my eyes and that an OTC eye drop may help. That is a major load off.

The other thing is the matter of the plaquenil in general. I have established through my own, though admittedly non-scientific, methods that it was making me gain weight and lose hair. I'm having my immunologist run some thyrod tests along with the compliment testing we decided to do. He thinks the compliment testing will be negative, was curious about the TSH tests, and decided to add some vitamin D testing to the mix. Now we wait to see if there's anything going on or whether it is the plaquenil, which I've started taking again. Aren't you just so proud? You should be.

I am trying to frame things in a different manner. I am starting to feel like I am finally coming into my own as a person, and I am determined to treat myself better. If the plaquenil is going to make me gain weight, then I had better get my buns to the gym. I was discussing alternative treatments with my immuno and we agreed that the weight gain is a lesser of evils compared to what may happen on other drugs. We'll ride this out until December (if possible) and see where we are when I return to the rheumatologist.

The Cost of Noncompliance

Let's just say that sometimes, I'm an idiot. I know this about myself, it is truly not news. Sometimes, though, I am in utter awe of my stupidity and the silly things I do. My recent less-than-compliant behavior is a great example.

Apparently, I decided that being on vacation meant I didn't have to take my medication. I'll let that sink in for a minute. Lalala no pills 2x per day lalala. I got out of the habit of taking my plaquenil. I was already not great about it... Then vacation came and I lost all will to take my medicine as directed. It's really not that much to take in the grand scheme of things, but I wanted to be like the other kids, dammit. Or, more accurately, I just didn't want to have to think about it.

I have to think about it now, that's for certain. Why did I do this to myself? I know if I am noncompliant bad things happen. I start to feel more fatigued than ever... I was about to fall asleep at my desk last week... And still I didn't start being fully compliant until... YESTERDAY!?!?!? I have had bad pain and fatigue and everything else, but I was like LALALA NO PILLS! Look where that has landed me... At least it was only for a week or so, but still. I am a loser for not taking my meds like I should. I know this is a problem that many people struggle with, so I've decided to be completely honest here...

I am in pain (albeit less pain now than, say, Sunday) but every moment of it is my own darn fault.

Bad Patient! BAD!!

So most people are bad bad bad at being patients. Granted, doctors could, you know, be on time for appointments, etc, but that's beside the point. Right now, I'm talking about patients.

Being a frequent patient myself (obvi) I want to point you to this article on CNN. I can tell you that, personally, I'm guilty of a bunch of these, but there are some things I want to specifically point to as paramount and tell you why.

2. You lie.

Let's be real here. You shouldn't be going to a doctor you don't trust enough to tell your deepest secrets to. They do not care that you're sleeping with the entire professional hometown football team. They just need to know that information. If you leave it out or tell untruths about being a virgin or whatever, you're putting yourself at higher risk for just about everything.

Then again, I feel like most people need to be more honest about most things, so I'm kind of harsh on this one. In this case, the things you leave out could cost you your life. TELL THE TRUTH!

6. You don't know what medications you're taking.

Pay attention to what you put in your body. Always bring prscriptions with you to all of your doctor appointments. Most people aren't on enough things that this become prohibitive. If you don't want to do that, make a Word document listing your doses, times, etc and bring that. However you want to handle it, this is CRITICAL information for your medical team. I carry everything with me in case of emergency. Seriously. Everything I take. This could explain my very large purse.

7. You leave with unspoken questions and concerns.

Having an honest and forthcoming relationship with your doctor also includes actually voicing concerns and not being afraid of them. They aren't an authority figure, they're a partner.

9. You're too scared to disagree with your doctor.

It's your body. Sometimes, you have to fight for it. Doctors are not saints. They need to be challenged. A second opinion is not telling your doctor you don't trust them, but telling them you want to be certain. That's A-OK. Also, it helps give your doctor a sounding board for potential treatments. Often, challenging your doctor can ensure you get the best treatment for you.

10. You don't comply with the treatment plan.

I am bad about this one, guys. I'm going to be honest. SO SO BAD! I find myself not wanting to take pills or do what I need to do. Because I am compliant with so many parts of things that it's hard to keep doing it all the time. I just want a break.