Tuesday, May 23, 2017

Please be kind to me this week.

Last week was rough. There just isn't any way to sugar coat it. The week before it wasn't kind, either. I am really struggling with my memory and it becomes a snow ball effect, it just gets worse and worse once I notice that I have forgotten something. I get frustrated with myself. I feel like, at almost ten months out, I shouldn't be this much of a mess still. I'm angry that I'm not any better. Granted, I'm not completely helpless but I don't feel like I'm any better. I'm still struggling. I'm not anywhere near functioning where I used to be. MY normal. I feel like I'm suffocating and nobody cares. Nobody gets it.

Last week I discovered that I booked my hotel room for my visit to the Mayo Clinic (which is this week) for the wrong day. I didn't panic right away, I figured I could change it. I called down, but I was out of luck. Not totally, they were still able to get me a room at the cheap rate, but I was out of luck on not being charged because they need a 24 hour notice. I was calling on the same day that they thought I was checking in. And from a business stand point? I totally get it, they could have booked that room in a heartbeat, that place is busy. I can't get angry at them. I'm angry at myself for being so stupid. For not double checking what the hell I was doing.

The next day our refrigerator died. Approximately $200 worth of groceries? Garbage. I mean, thank god my dad was in town and my parents are amazing because they went and bought us a refrigerator that day and got it installed, no question. Matt was at work, I'm at home crying my eyes out as I'm throwing away food I can't afford to replace and still haven't, and my parents are out buying me a refrigerator they can't afford to buy me either. Then I go to my psychiatrist appointment, who informs me, in great detail that I just can't remember that I'm basically brain damaged. The stroke that I had during my AFE damaged a crucial little chunk of brain and that's why I'm struggling with life. So bottom line, I will always be on a cocktail of anti-depressants, mood stabilizers, etc.

And I don't know why, but that is really upsetting to me. I don't know why I'm OK with being on something for blood pressure for life but tell me that I need something for my head for life and that is just completely unbearable.

But he increased my dose of Topamax, which is our plan for awhile longer to see if it makes a difference. I will say there is an improvement with this compared to the Cymbalta, which was totally useless. The other perk is I hardly eat at all while on Topamax, so maybe in time I'll stop looking like I'm seven months pregnant? Though the endocrinologist said, sadly, that is a side effect to being on steroids- you get the distended stomach and there isn't a whole lot you can do about that. So that's exciting. I'll always be fat, apparently.

As you're reading this, I'm wandering around the Mayo Clinic campus in Rochester, Minnesota. I'm there for my follow up appointment for Endocrinology. I'll have labwork in the morning and see the Endocrinology team in the afternoon. I don't know really what they'll be doing, but I'm kind of nervous. I have some questions, most of which I don't know if they can answer for me. I've been so tired these last few months and honestly, I'm wondering if it's adrenal fatigue? I can't even go for a short walk without feeling like someone has hit me with a car. Surely this can't be normal. I mean, is this just how it's going to be my whole life? What kind of quality is that? How do people function like this? I carried Lucy to the park (just across the street) about a week or so ago and I'm not kidding, my back hurt so bad for days I could hardly move. Like you hit me with a bat. It's really frustrating and it's hard to plan my life. I should be able to go for a damn walk without feeling like I'm on death's door the next day.

I'm trying really hard to stay positive. Sometimes I feel OK and then out of nowhere, I'm upset. I'm hearing a voice in my head and it's just this never ending loop of why everything is crap, why I'm crap, why I'm a terrible mother, wife, daughter, sister, friend, person, why I should just end it all. I think paranoid things that, in the back of my head I know aren't true but then I have to keep telling myself that. I feel crazy. I feel like I am actually going completely crazy. This is the worst feeling in the word. I can't even explain it. I feel like I'm not making any sense. It's just a really tough road I'm on right now. But I'm trying. I don't know why, it doesn't even feel worth it to be honest.


Shooting Stars Mag said...

I can't even imagine what you're going through and I'm sorry about all the setbacks/bad news you get. I hope your time at the Mayo Clinic goes well and they have some good things to say, or at least information to give you so you aren't completely confused about why you're so tired, etc.

I'm glad you're trying - even when it's so so hard. We all want you around and your family does too, even with this new normal.


SavingsInSeconds said...

I'm so sorry to hear that you're going through such struggle. It sounds like you have a lot of people who truly love and care about you. It's worth it to fight through, even if just for them. Hang in there!!

The Flynnigans said...

Dear friend, I have no magic healing words or words of wisdom. Shit sucks and you've still got life going on all around you. I hope that one day they'll find a perfect cocktail for you where you feel even the tiniest bit of familiarity with your old self. I know she's gone but that's not to say you can't be downright pissed about that. I think anyone in your shoes would be....

All I can offer is an ear and virtual hugs sweetie. xoxoxo