Friday, September 13, 2019

Purple fingers, season change, and pills

It's been awhile since I've talked about what's happening health wise. Not that I think anyone really cares, but it's been nice for me to constantly have this to check back on when I forget. Between my blog and Facebook memories, that's really the only memories I have. Is it weird to say I'm grateful for social media for that? Anyways.

So it's fall, and as I look back on this time of year the last three years I see that this depressing slump I'm in is pretty par for the course. I had therapy last week and I went in as a wreck. An hour no longer seems like a long enough session and she said maybe down the road I might consider going weekly because I seem like I could benefit from it.

That's probably true, but I'm getting tired of always waving the flag. Every threshold I've had in the "I'm not that bad" column I seem to be crossing off and it's frustrating and defeating.

It's fall now and I can feel depression coming in like the cold weather. Any motivation I had to try to do things is pretty much gone. My interest in pretty much everything is gone. My appetite is gone. I'm so tired all of the time that all I want to do is sleep. Even with my medications it's just.... gray. Everything feels gray.

Have you ever been to the blog Hyperbole and a Half? Anyone who was anyone in the world of blogging 5-10 years ago had visited this blog regularly and she just did it so well and ended up writing a book and it is great. Anyways- she did a blog about depression that was so SPOT ON and honestly, if you  have never seen it, please-please-please go, read it, and come back.


OK, so that's kind of what it is. It feels much worse some days. It dawned on me the other day that the idea of dying or being dead no longer scares me. I think for a little while after my AFE the idea of killing myself or being dead was scary because I had never had the feeling of wanting to be dead. I think when you first register yourself as someone struggling with suicidal ideation (which is different than being suicidal, don't freak the hell out, people) it's kind of alarming. More alarming though is being in it right now and know that you had a couple of weeks/months where you didn't think about it and you never realized how good you were having it right then because you depression is still bogging you down. Then you realize that's it is really depressing that that moment in time becomes the goal, knowing that you are fully depressed and feeling awful but at least you didn't think about wanting to die everyday.

That's a really depressing goal.

It also makes me wonder why am I even hanging on if that's my goal, that's what I'm working towards. Because that couple of weeks/months wasn't great at all, it was just a period of nothing. I felt nothing, but I wasn't raging. Realizing that my brain functioning makes no sense to me but is also really difficult to manage is just.... it's defeating.

Aside from that though, the medical situation is just as bad.

Auto Immune stuff: My inflammation lab work is still very, very high despite taking my methotrexate every Wednesday. I was on 8 pills on Wednesdays and then she had me do half in the morning, half in the evening to see if my body absorbed it better. It didn't seem to make a difference and the lab work showed that. Now I'm up to 10 pills on Wednesday, split doses again, and still- I feel no different. I've become one of those people who are like a weather barometer- I can feel the weather. Last week was pretty rough and I normally feel like I'm getting the flu but last week I felt like I was on day 3 of the worst flu of my life. That was every day and there isn't a thing I can do to deal with it. Plus, my fingers are almost constantly purple so hello, fall.

Gut check. I continue to have really horrible abdominal pain. I've done so many tests, scans, and lab work and nobody has any idea why my entire abdomen area hurts. It's not heartburn, it's not my gall stone, it's not my liver or appendix, it's not cancer, it's not any weird disease or syndrome, it's not a diet issue, they legitimately have no idea. Which is just great. They said I could "come back if I wanted to" later this year and it's like YES- BECAUSE MY ENTIRE MIDSECTION HURTS EVERY DAY TO THE POINT OF HAVING TO LAY DOWN AND DOING BREATHING EXERCISES AS IF I WAS IN LABOR TO GET THROUGH THEM. So yes, I want to come back. Fucking fix this. Jesus. I mean, I get not knowing, but ask another doctor, send me somewhere else, literally do anything at this point.

Busted. In not sexy news, my entire reproductive system and parts seem to be busted. Intercourse hurts and it's all for nothing because I can't feel anything and orgasms aren't happening. I know that this is probably really normal for my situation but the last three years has been... crappy. I see my primary care doctor in November for my physical so that's on the agenda but yeah. It's busted. Also, the hot flashes are getting SO MUCH WORSE. I only get a period once a year (which is just fine) and this year I got it maybe a month ago and it was so painful and I felt like someone was actually stabbing me for an entire day. It only lasted for one full day, and so I'm grateful for that because it was painful.

Neurology. I won't get into it much here but just know, my memory is not improving. For awhile there I thought maybe it was but that was like a false oasis because it's gotten worse. At first you think it's just little things like your car keys or phone go missing, you forget to put the milk away or shut a cupboard- all stuff that regular people do everyday. I know people blow that stuff off when I talk about it but for me, that's irregular. That is not my normal, those are not things I normally would do. Then it kind of morphs into other stuff. I'll forget to take my medications, I'll sort them all wrong or forget to have Matt check them, I'll forget to wear my CPAP mask at night, forget to shower or how to wash my hair, I couldn't remember how to tie my shoes last week. I dropped Penelope off at school and couldn't remember how to turn my car on and then how to get home. The forgetting where I live thing is starting to happen more and more. I had a bigger incident that I know Matt kind of brushed off and said, "well you remembered- and that's what matters" and I'm like, NO- the fact I forgot IS A BIG DEAL.

Sometimes it feels like a split personality. Where fog Sara is kind of in control and at the wheel but then old Sara pops in to say, "danger! danger!" and nobody listens. Like some little part of my brain knows I'm in murky waters but can't get me out.

I'm really afraid that I'm going to just progressively decline. I'm doing all of the puzzles and exercises, I do them all of the time, and still- it's not working. The closer I get to the 5 year mark (which is when I should be at my "peak recovery"), I'm getting scared, like I'm going to just miss the target.

Ha ha. I saw in Facebook memories that a few months after my AFE I was like, "god, I hate taking all of these meds" and I was only on 4 things. FOUR. That's nothing.
I've got all of my steroid replacements, my beta blocker, my acid reducer, my mental health medication, and my vitamins. And this is only my normal day, when I get to Wednesday I have to add 10 more in. 
That's my typical morning. I'm so used to it now that I don't even think about it but at every doctor appointment I ask if I can stop any of these. I know the answer will be no because my body doesn't produce any of this stuff or function without them, but I ask anyways.

I'm just in a really awful spot. Yes, I have my kids. Yes, I have things to look forward to. Yes, I have a great husband. Yes, I have family and responsibility. I know all of this, and I get all of this. But I also know that I'm tired. It's like asking an amputee to just drag themselves a little further through a desert when they are straight exhausted. I feel like I can't keep dragging myself around.

But I do it. I'm medicated and even-keel so I can keep going.


Beth (Coffee Until Cocktails) said...

I do want to hear about your medical stuff, it helps us understand you and where you are coming from. And I am sorry it all just sucks right now. Each day is a battle and when you get through another day, you win. I know that sounds cheesy. Just know I always read and I do care. And I send you love.

Jo-Anne's Ramblings said...

Taking a shit load of pills to keep our bodies working and healthy is something many of us do.

Trish @ The Trish List said...

I don't ever want any person to feel like they can't talk about how they are feeling mentally, physically, spiritually or any other manner. Talking about it helps us more then we realize. I do hope you get the answers you need. Doctors these day seem more frustrating then ever. I have been told multiple times over the years that "nothing is wrong" yet I always feel like my gallbladder is killing me. Stay strong friend.

Shooting Stars Mag said...

Like everyone else, I do care, and I think it's great that you're sharing your story. I'm sorry that you're feeling awful most of the time though and that not all of the doctors can figure out what's going on. I hate that, and I've definitely dealt with that. Doctor after doctor, test after test. It's tough, and you feel miserable, and they need to just FIGURE IT OUT! I do hope that things start looking up a bit - even if that means another diagnosis or another pill that can help. Love ya!