Friday, June 26, 2015

Update

I don't have breast cancer, which I believe was the big question I left hanging back when I last posted. I have felt guilty about not updating that, but at the same time, I'm not convinced that anyone reads this blog so... Sorry if I left you hanging. I didn't think you were real.
 
(Also, I'm having lots of computer issues and I can't remember my password to log into this site from the new laptop. Ha. So I have to have the patience to deal with the finicky computer that remembers how to get on here.)

As for the rest of my health, I'm going to attempt to update by theme...

Asthma

It's been an interesting year. I had both flu strains. Strain B shut down the kiddo's school for a week. We all got it and it wasn't as bad as strain A, but it was persistent. It took me 6 weeks to get the asthma under control. Kiddo and I ended up with sinus infections to boot. The whole thing sucked and took about 8 weeks total to clear up.

Overall, control has been poor and I have ended up on a lot of steroids. Fortunately the HPA axis did not suppress, so I have that going for me.

Gallbladder/Sphincter of Oddi Dysfunction

I have no clue what is going on. Near the one year anniversary of the gallbladder surgery, I had a week where everything was perfect and I thought I was healed and then...it all started back up again.  More recently, I had a touch of pancreatitis for a few days (that was exacerbated by a particularly bumpy bike ride). So this is going to be an ongoing challenge, I think. 

I find if I take the muscle relaxants at night for several days that it can get mild flares under control (and I only start feeling stoned on day 3 so I can still drive...for a while anyway).

And the food sensitivities don't help, either. (Yes. I still have those. I know. I'm special. Believe me, I would prefer to be normal.) I also don't digest food so well, and weird food sensitivities aside, lots of things upset my system.

Energy (Adrenals etc...)

A.m. cortisol levels were at 17 the last time they were tested, so thumbs up on that. I do have fatigue and weakness, though. For the last year plus, when the birth control pill pack ends, my energy falls off a cliff. (This happened during the HPA Axis suppression as well and then cleared up as I recovered only to come back with a vengeance.) I've mentioned it to the OB/GYN who just shrugged and told me I could skip my periods and that was it. Since they didn't give me enough pill packs to really do that, I can't opt out as much as I would like to. If it's a vacation or a special event, I'll do it, but otherwise, I suck it up.

This fatigue is pretty much as bad as adrenal insufficiency fatigue, except it's not my adrenals. I found one other person with PCOS who experienced the same energy drop off, so maybe it ties into the PCOS somehow. It is debilitating. I don't cook for my family. I don't write. I nap a lot, which is unheard of for me. My brain hurts (literally under my skull) when I have to think. It's awful and I'm not sure there's anything that can be done about it, which is frustrating. I'm losing ten days a month to this bullshit. 

Some blood work came back recently showing some potential issues that might be confounding things. My thyroid is (possibly)  starting to go. Not abnormal yet, but it made a significant jump in that direction. The graph looks like a hockey stick. I will be requesting more blood work on that and we'll see what shakes out.

And I have no idea how I'm not anemic. Somehow I have normal iron levels, but the other levels that feed iron levels are off-the-charts low. Like, there's almost no ferritin.  RBCs are hanging on a wing and a prayer. All the other iron markers are wonky.  I am always on the cusp of anemia, so I'm not totally shocked, but these lab results are way worse than usual. 
 
I'm supposed to be taking iron supplements but my gallbladder-less system can't tolerate them. Like, at all. And the PCP seems to not give a shit so...I guess I'm going to have to become anemic or find a new PCP before that happens who will be a little more proactive.

Exercise

I'm biking again and it was way easier than last year...until I got the B strain of the flu. That strain hit my muscles and my legs have really hurt as I return to exercise. Way beyond what would be normal for reconditioning after an illness. I'm talking a month later, it still hurts like a razor is shredding the muscle fibers in my legs. It finally seems to be resolving, though. I think. At least the last ride went well.
 
My time per mile still sucks and I wonder how much of that might be the low iron and changes in the thyroid. I just can't go. I keep trying and nothing improves. Imagine every workout feeling like the first time...that's where I'm stuck.
 
I've started physical therapy for my knee. Doc says there's not much hope of improvement, that the problem is likely chronic at this point. It sounds like my options are baby it forever or trash it further to the point where they are forced to try surgery.

One step forward...a hundred backwards. That's my exercise theme.