Monday, September 11, 2017

Medical Update... not as cool as Weekend Update.

Lots of interesting things to talk about this week. I didn't realize how jam packed my September was going to be with medical stuff, but here we are.

I think it was last week when I told you about my last visit to the Mayo Clinic in Rochester, Minnesota. Scheduling my appointments there is kind of a nightmare because I live far enough away that I can't just drive there and back in a day and see doctors. I have to spend the night the night before my appointment, hope that my appointments don't go too long in the day so that I can drive back and be well rested. I generally don't drive much after 5 p.m. because by then I'm absolutely exhausted and running on fumes. I hang out at home so if I doze off it, not awful. If I doze off in the middle of rush hour traffic? Not so great. So though my next appointments were going to be in September, they had to be pushed out to October 31. I'm attending what I'm calling the "fat kid class" in the bariatric center and then I'm meeting a doctor in the Women's Care Clinic to explore my estrogen replacement options. Which sounds thrilling, right?

Well, when I spoke to the scheduler on the phone she told me there is a "short" questionnaire I would have to fill out and bring with me for them to scan into my file. Which, alright- that sounds fine.

And then it came in the mail. I didn't give it a lot of thought, just threw it on my desk and figured I've got some time, but then when I was waiting for something to download, I figured I would page through it.

Holy balls, lambs.
It's twelve pages asking me about my "perceived stress", sleep patterns, depression, and sexual function. The perceived stress things are hilarious because honestly, I feel like I should have two questionnaires, pre-AFE and post-AFE, because that would show how far I've fallen.
The sexual function section?! I'm not a prude by any means but JEE-SUS. We're just getting right into it, aren't we?! Needless to say I filled out all twelve pages and filed that into my Mayo folder. Sounds like that appointment is going to be a treat.

In therapy, I talked a lot about my recent visit to Mayo, my frustrations at being shuffled to one doctor to the next, and then I talked about my marriage. About how my support system isn't totally stellar and how I wonder if I'd be further along if it were better. It's literally the only hour in a biweekly span that I feel like someone gets it and validates my feelings. Helps me work through them. Then I come home and I just feel so.. discouraged and sad.


At my local endocrinology appointment, that was frustrating. Not only was I late (which is so not like me) but I almost wasn't seen because I couldn't remember my birth date. I had to explain about my memory issues and she didn't sound totally convinced but honestly, who comes to this appointment for fun in my place? Honestly, let's be real.

Then when he comes in, and I really like him a whole lot, he doesn't seem super interested in seeing me. He knows I see the endocrinologists at Mayo and it's like he's trying to shuffle me out of there? I don't know. I'd much rather stick with him and the point is for me to kind of phase out of Mayo unless I have some kind of major problem. But I'm explaining all of my issues and he's like, "Yeah, those aren't fun.." and then NO SOLUTION. I think the problem is everyone hopes "the next specialty clinic" can fix me so it's not really their issue anymore.

The really cool visit was with my psychiatrist, though. It doesn't sound like a thrilling thing but I got the results of my GeneSight testing, which is a test based on your DNA. It gives you the lists of drugs that might work, might not work, and gives you indicators why. This was my next option because I've been on a variety of different anti-depressants, in different classes, and nothing works.

Interestingly, remember when I was highly suicidal on the Cymbalta? And everyone was like, "Oh, that's mild and works for almost everyone!" Yes well, that's in my "significant gene-drug interaction" also known as my "big time no-no list". All of the other drugs I've taken (Celexa, Lexapro, Paxil, Zoloft, and Prozac) are in my "moderate" or "moderate no-no list".

Sure, that sounds bad and it is because it's all of the cheap stuff, but at least I feel validated. I don't feel like a whiner. It confirms serotonin based things aren't going to do it for me, which is what he (the psychiatrist) thought all along.

I am on Wellbutrin right now, but that's on my "big time no-no list" and while my suicidal thoughts are still there they aren't like they were with Cymbalta. So we're going to experiment and double my dose. Which means in the next two weeks we're going to know if I REALLY can't do it or nothing happens. The trick is that while this test is really cool, it doesn't factor in brain injury or trauma, so my DNA says one thing but my body processes drugs differently know. This can only be used to point us in a general direction.

The drugs that "should" work on me aren't great. Either they are new and fancy (Trintellix, Fetzima, etc), and EXPENSIVE, or they are "old and dirty" (Norpramin, Anafranil, etc) and have really awful side effects for not a lot of improvement. They basically aren't commonly used for a reason.

Here's what we also learned: my DNA really wants me to be a prescription drug addict. Pretty much every single drug on the market that is commonly abused and easy to get hooked on is what my DNA wants. Guess what it doesn't want, or at least shows up on the "big time no-no list"? Methodone and other drugs used to treat addictions.


Just kidding, because that's not funny. It's serious.

Also things I shouldn't be taking, ibuprofen (seriously), Propranolol (which is what I use for my migraines and blood pressure), and most mood stabilizers (sorry, Matt). Interestingly, drugs used to rev you up, get you going, give you more energy? I have no issues with those but we've tried three and they do nothing for me, even at the highest doses- an example of me processing stuff differently.

So overall, I'm a genetic mess (and they can even tell me that both parents gave me this crap shoot deck I'm working with). It's really a neat thing that science can do this now, and while it's disappointing in a lot of ways, I feel better knowing I'm closer to finding something that works. The journey to finding a depression medication that does something positive for you is harrowing and I can understand why people give up. I get it.

I have no appointments this week (yay!!) but teh following week I have therapy, I see my pulmonary doctor, and I see rheumatology. I'm nervous for that one.

1 comment:

Julie H said...

I think it's crazy that you go to these appointments by yourself. You really should have an advocate (and a driver) going with you.