Working on My Fitness

For the first time in a long time, like really really long time, I'm actually able to engage in physical activity without extreme pain and/or feeling like death warmed over afterward. This is a huge development. I think there are a combination of factors playing into this. All good things, but all things that have taken a long time to come to fruition.

First, the plaquenil. Where would I be without it? My fingers are less swollen, to the point I may have to get my college ring re-sized. That's how long my fingers have been sausage-y. They almost look elegant. They're still short, but they aren't so stumpy. My joints hurt less, meaning pain doesn't keep me from trying to work out again tomorrow, or leave me feeling like I may have done permanent damage to myself. I feel actually good and limber after working out, instead of stiff, pained, and unable to move.

Second, I really think the airway clearance is making a huge difference for me. When I started this, I thought it was a little silly, to be honest. Why would I need to do this crap forever? Couldn't I just do it when I am not feeling well? No. The answer now is clearly no. I need to do it. I haven't been able to run without feeling like my lungs were burning since... I really don't remember. We thought it was asthma, which I guess it still could have been, but now I do not even need an inhaler when working out. My bronchioles don't burn. I used to get the feeling I'd run a very long distance after ver short ones. Now, I can go and go and push myself. That is amazing.

What do I mean by go and go? Last night, I ran 4 miles on the elliptical, if you can call that running. My average speed was between 7 and 8 miles an hour. Seriously! I can hardly believe it myself. Granted, it was on the flat setting on the elliptical, but I still think that's something to be proud of, especially since I've only been working out for the past week. I only just got the guts to do it. It makes me want to cry a little because I've been at points when walking a half mile was difficult, even in ideal weather. I've been at points when I dreaded coming to work because of walking from the metro to my office.

This is freedom to me. I can do things I want to do. I can get in better shape. I can be fit. It wasn't long ago when I didn't think that was an option for me in my life, other than trying to do some walking and not lose the function I have. Amazing.

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.

Confessions

Like most people, I worry about the future. My worries are a little different than those of most people, at least the ones who don't have an illness like mine...

I worry about so many things about the future. Will I be able to keep working? How long until I have to go on disability? Will anyone be around to take care of me or will they care to? If I think too much about these things, I'm pretty certain my head would just explode. Most of the time I feel pretty confident that things will work out and that there is a greater plan at work, but sometimes, it's really difficult, especially on those days when getting out of bed feels like too much.

Recently, I've noticed some visual acuity changes. I went to a shopping center ophthalmologist. He said I need to see a better one with better machines. My eyesight has deteriorated a quarter over the past year. Prior to that, it hadn't changed in over 6 years. It frightens me because plaquenil can cause these changes. So, in addition to the hair stuff (which I mentioned the other day), I am really worried about my eye sight, but I really don't want to see a doctor about it. Funny how that works, huh?

I really feel like there's a lot going on with me in an emotional sense. The thoughts of what will happen next if the plaquenil has to be stopped are frequent and scary and bring me back to those worried I mentioned earlier. What if I have to go on chemo for the autoimmune stuff? What if I have to get IVIG more frequently? Both of these are possible, maybe not probable, but I really won't know until I see an eye doctor and call my rheumatologist. I promise I will, it's just a difficult call to make. It makes me really sad.

The Vanity Line

Where do you draw the line to say something is vanity rather than a real concern?

I ask this because I'm pretty sure the drug I've been taking to quell my autoimmune problems is making me lose my hair.

I realize that this is a small issue, but I'm supposed to be on this drug forever. It isn't like a temporary chemo-related hair loss. I'm not exactly sure how to deal. I'm going to have other things checked to eliminate all other possibilities, but I really feel in my heart of hearts that I shouldn't be taking the plaquenil anymore.

This leads to additional questions, not the least of which is "If not plaquenil, what?" because, jeez o pete, I just don't know. Maybe something will be revealed by compliment and other testing this month at the immuno so we can determine a new plan of attack.

Just when I thought things were getting better...

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.