Wednesday, September 26, 2018

The struggle continues.

I haven't done a medical update in awhile so I figured I'd do one so people don't think I'm miraculously awesome.

  • My mental health is... shaky. I don't mean that like I'm on the verge of hanging off the bridge, but just that it doesn't seem to have any consistency. Some days I feel really great and think my combination of Wellbutrin and Trileptal are working. Then other days I feel like a ton of bricks has hit me and I check the calendar to see when my next psychiatry appointment is. Turns out it's tomorrow. But then I think, what am I even going to say? I don't know how to convey what I'm feeling. I can't even do it here. But then I wonder if maybe it isn't just circumstantial. I'm dealing with two deaths, navigating those losses with my kids, we're broke and it stresses me out, and we're only three weeks into school and I feel defeated. I don't know I guess. I mean, this is better than when I was on just Wellbutrin, that's for sure, but it's hard to know where the top is, you know? Like what is my best outcome here? How will I know I'm at the best it can be? 
  • Therapy is going good. Again, sometimes I walk out of there feeling like I have a good handle on how to handle things and cope, and then other days I'm crying in my car the whole way home. There appears to be no rhyme or reason to any of it. 
  • I am realizing that I have either always had it and just didn't realize it, or I'm just developing and almost crippling fear of What If? What if I get cancer? What if there is something wrong with me and nobody is finding it? What if I never get better? What if they think I'm crazy? The list goes on. I feel like I'm not really able to convey how I'm feeling, like I'm not able to get the words and thoughts out, so I just give up and say I'm fine. I'm not fine. I'm very much not fine but I'm also tired of people telling me they don't know. 
  • Rheumatology is kind of freaking me out. I basically dread going. My doctor is retiring so pretty soon here I'll be seeing someone new and the idea of going through it all over again is just daunting. She doesn't really know what to do for me. The methotrexate isn't working miracles and to be honest, being on that long term kind of freaks me out. My next stop would be Humira. I absolutely, 100%, no doubt about it, cannot inject myself. I can't even have Matt do it. I really struggle when a trained professional does it so I just can't. I know people tell me I'm being a baby and I know, and I don't care. I can't do it. So that means it would be Humira infusions. Which... that's scary because my mom did infusions of a few different drugs and she developed cancer. That's one of the "it might happen but probably not" side effects but knowing it happened to my mom scares me. The doctor doesn't seem to be worried but then I think- maybe I ought to just deal with chronic pain because that's probably better than fighting cancer. Right? But it's been getting colder and the seasons are changing and I can feel it in my body. I used to think people were weird when they said that but nope, I get it now. I feel like I have a fever and the start of the flu every day. It's just the worst. 
  • I see Endocrinology in November. I have to ask about weight loss. I'm not kidding when I tell you I am barely eating 1000 calories a day and I have not lost a pound. I'm at almost six months of this and not one pound. It hurts to exercise. I'm so frustrated. I'm terrified because my grandma's cancer could have been found sooner had she been thinner and that's constantly going through my head. The cancer she had is what I'm at risk for and I keep thinking, if it's a freakish and bizarre thing, it's going to happen to me. I just know it. 
  • Gastroenterology.. I don't even know what to think. I'll tell you right now I'm not taking that Linzess every day as prescribed. NOPE. Now I'm at the point where I'll take it when I feel constipated and plan to be home bound for several hours. It's not gotten any better, I am legitimately on a toilet for six or more hours. If I'm lucky I actually make it there before all hell breaks loose. Literally. But I still have stomach pain and at this point I'm so frustrated that I don't know if there is even a point for all of this. 
  • I went a year EXACTLY without a period, then got one. Then a month after that I got some random spotting. I've had just a dull pain all of the time but it doesn't feel like period cramps. I figure I'll wait until my physical to deal with that. 
  • I have THE WORST rash under my left boob. It's always my left boob. At first I thought it was a heat rash or like a diaper rash would be, but no. This keeps coming back and today it feels like it's on fire. No cream is doing it. I took a picture of it (sorry, you don't get to see my under boob) just in case I don't have it during my physical- which is how everything goes. 
  • That's my medication spread. It's all fun and games when you've met your deductible but I'm really worried about the cost of all of this come January. I now have to have all of medications reviewed thoroughly periodically and that's really nice because honestly, how would I know if I shouldn't be taking something?? I finally labeled them with "AM" or "PM" on the lids so I'd remember which pill slot to put them in. 
So that's the scoop. I'm getting weary. I'm starting to feel resentful over all of this. I think I always kind of did but I'm recognizing and acknowledging it now. But it's OK- I have therapy next week. 


Shooting Stars Mag said...

I can't imagine injecting myself every day. Seriously. My mom and sister do it because they have diabetes and I'm just like...nope. That's a big reason I'm trying so hard to lose weight but it's a bit of a yo-yo right now and it's upsetting when it goes up. I can't imagine doing so much and not losing anything though! How frustrating - and that doesn't sound normal at all!!

I don't know the cost or anything, but have you looked into Pill Packs? They package all your meds in little plastic bags so you know what all to take at certain points in the day. Could be handy!

I just saw my endocrinology doctor - more tests to do. Fun fun. I have high Cortisol and they aren't sure why quite yet. My sister had a tumor (not cancerous) on her brain this summer from Cushing's and had that removed, and it COULD be that but it's hard to diagnose and then it could be something else that could turn into that. So idk. It's a long haul and frustrating.

I know you're going through a lot though, and I'm sorry. I wish I could do more for you!


Neely said...

You are amazing for sharing this. I can't imagine whaty ou are going through but I pray that it gets better!

Beth (Coffee Until Cocktails) said...

I'm glad you wrote an update, it's good to get it all out there and show what you're dealing with. All I can say is that you are a Warrior. I send you strength.

Anonymous said...

WOW! It's so incredible that you are able to share this! You are extremely brave and strong and I pray that things get better for you!