Friday, December 19, 2014

Dec. Medical Update

While December is the month of holidays, it's also been a busy month, again, for me and doctors.

Not all the appointments have been for me - not only do I juggle my appointments, but I juggle the kids' and granny's appointments as well.

And 2014 has been the year of lots and lots and lots of appointments. So I thought I'd give an update. I know, it's boring to read, but documenting things here helps me keep track of things, which I need!

For a while now I've been having some issues. Without going into details, I can sum it up as phantom limb pain in my chest area. Basically my boobs have been hurting. Except I don't have boobs. And it was kind of freaking me out because it has just been getting worse and worse. So I went in to see the doctor. It turns out my muscles are spasming and tight. Which is inflaming the nerves, and so when the brain interprets the signals from the nerves, it goes back to what it knows. Next week (nope, I don't even get to take Christmas week off!) I am going to my favorite occupational therapist for an evaluation and a what to do next plan.

This is both awesome and not awesome. My therapist is great. She has helped me in the past. But, the thought of doing therapy several times a week just makes me want to cry. I'd like to not have to go see a doctor. Ever. Again.

Anyway, if she thinks therapy will help, that's the route we'll take. If not, back to the doctor? I'm not sure. I didn't ask. Because I'm assuming she can help. However, the "joke" now is how can you tell I'm in pain? I'm breathing! (But it's not usually a lot of pain, but it's pretty much always there.)

In addition, most days I've felt like I've been run over by a bus. I've been tired for so long I can't remember not being tired, but since summer it has felt worse, which isn't saying much because it was an issue before then. I constantly feel like I'm right on the verge of getting some virus - do you know what I'm talking about. The day before a virus hits, and you kind of think am I getting sick? Or not? Because it feels like it might be starting, but it's not quite full blown. That has been my normal for a while now. And the brain fog has at an all time high as well (though my migraines are back with a vengeance which isn't helping). And then I've been randomly popping low grade fevers which just kick my butt even more.

I kind of started to wonder if it was all in my head - like psychosomatic. Or maybe I was depressed - because I know that can cause one to feel tired, run down. Except I don't feel depressed - I feel overwhelmed, exhausted, run down, beat up, and moody - but not depressed. I've struggled with depression before and even if I don't want to admit it, I usually know something is going on. But I don't feel that way.

I know my iron levels at last testing weren't stellar. But they haven't been stellar for a long time and things have just slowly and progressively felt worse and worse.

Today was my regularly scheduled check-up with the oncologist. I saw the PA (who by way, is a wonderful person) and so I just laid it all out on the line. It all just came spilling out - I told her everything, how I was feeling, I also said something along the lines of "I mean, sometimes I wonder if I'm not losing my mind. Or maybe it's all in my head. Or I could be depressed. I don't feel depressed. But you can be depressed and not feel it. It's tricky that way. But if I was depressed or if it was all in my head would I be wondering if it was those things? And, oh my goodness, what is wrong with me?"

And my PA listened, nodded along, and asked some questions. We talked about iron, she asked if I had other tests run (which I had and could give her results for) and then she said, I think I know what's going on here. And basically we are talking about chronic fatigue and some adrenal issues. Which I've learned since sharing with others, that a lot of doctors won't talk about or believe it's "real" or whatever, so more points for my PA.

Anyway, we have a plan. Which will start with me doing 6 days of steroids. I took some steroids during chemo. I can already tell these are going to be some intense, crazy 6 days. I think I'm starting them Friday (though maybe delaying until after Christmas, but I kind of don't want to because I'm so freaking tired). Then after that I'm starting a sleep aid that will help me sleep, help with the insomnia, and help reset my circadian rhythm to something more normal.

Needless to say, I've got pretty much all my hope in these two baskets. I want this to work and I need this to work. So I can function. So I can drive myself and 4 other people to all our doctors appointments ;-) But no, seriously, I need energy and I need to feel good. I don't need the energy of a preschoolers. And I don't need to feel great. I'm just asking for more than I have now and feeling good. Because I just feel like if we can't get a handle on it, some thing's going to give.

(I wrote the rest of this a few days ago, and am now adding this part before I publish)

We also ran iron levels and I'm almost in tears to tell you that I just found out,f* not only did they not hold steady, they dropped. So. My almost non-existent iron levels are now about half of almost non-existent. When the doc called with this news I seriously wanted to burst into tears. Then I wanted to say f*&k a lot. Because more than sad, I am so incredibly, incredibly, beyond how I ever thought I could feel, angry. I'm just angry. Which means even if the treatment the doc and I planned - the steroids and some sleeping meds - even if they work to perfection, I will essentially still be tired. Not as tired, but tired. And I'm so absolutely pissed about this.

So, I guess it's time to pursue possibly almost killing me - which I'm half joking, but half not - because I think (though this is what the allergist I met with earlier said and I would need to consult with someone else to get an actual plan) they will pre-admit me to ICU, pre-dose me with lots of meds and then give me iron and keep treating reactions as they come and keep giving me iron and assume that I don't stop breathing. But he can't do it and I will need a new doctor, who specializes in this and maybe they'll say no, no, we won't be that crazy!

So. Boy. That sounds like fun.

Anyway, I'm going to temporarily try to say screw it all. Tonight we start baking cookies. And we will probably continue to bake until Christmas Eve.  But my girls are going to help me. And this is our tradition. And I'm going to be happy doing it. So that is how it shall be.

Have a good Friday friends!

And happy Hanukkah, Merry Christmas, Happy Kwanza, and if I don't come say hi for a while, Happy New Year!

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