Last week I made the trek to Rochester, Minnesota to go to the Mayo Clinic. I'll be honest, I'm kind of sick of going. It seems to be a total coin toss on how it'll go and sometimes I feel like I'm getting really great information and other times I feel like they are looking for a reason to charge me out the rear on tests and stuff I definitely don't need.
This visit was two parts: 7:00 fat kid class about weightloss and how to do it, and then a 10:30 appointment in the Women's Health Clinic about estrogen replacement options. I drove down on Monday after my therapy appointment, so that meant I didn't get to my hotel until 9 at night. I was exhausted, and hungry, but it was so late and I didn't really know what to do for food. The gift shop was closed, the cheap restaurant was closed, Starbucks was closed, I didn't know how to get to any of the places within walking distances and not sure I'd find my way back, so I opted to eat the granola bar I brought for breakfast and call it a night.
Can I also just mention my thermostat was set to NINETY DEGREES?! I turned it off completely and it still never got below 78 in my room. I sweat my ass off all night because the fun part about beginning of menopause are the night sweats. I didn't get more than two hours of broken up sleep because it was so hot, the pillows are awful, and I forgot my CPAP machine at home. Frustrating.
So I got myself dressed at 6 and was out the door by 6:30. I got myself a water quick and headed to my class.
It was me, a couple, and another woman. That's it. We got a folder with information on how to count calories, good foods and bad foods, basically all of the common sense stuff we already know. They briefly talked about the services the Bariatric Clinic provides (medication, surgery). We did a little PowerPoint deal for about a half hour and then we all wait to see a Dietitian one on one. I wasn't last, so that was something. I was kind of worried I was going to be late to my next appointment because my schedule said this could last 3+ hours! Finally when it was my turn to see the Dietitian, I grabbed my stuff and headed over.
And dammit if he wasn't cute in a alternative band lover kind of way. He had Vans on his feet, a sweater vest that looked like he picked it up from a thrift shop and yeah.... he was pretty cute. Very distracting.
He's going over all of my paperwork and says I'm eating well below my recommended calorie intake, that's good, but he encouraged me to try to eat more. He mentions that I should add exercise in, and I say I couldn't because I feel like I have the worst flu of my life every single day and like I've been hit by an actual bus but nobody knows why. He agrees that if it's an auto-immune disorder I have to be very careful because exercise can trigger flares. He then sees I'm on steroids, for life, and got a bit of a dejected look because (bingo!!) that's why I'm not able to lose weight. He then starts talking about medications I can take that basically suppress your appetite. I can't take Topamax because it made my nervous system go haywire, so that's out. I'm already on Wellbutrin and I eat one meal a day, maybe a snack, too, but I'm legitimately not hungry. Ever. The only reason I eat at this point is with my medication because I'll throw up if I don't. Who says anorexia works? It's not working on me! Sigh. He looked pretty deflated by the end of my session, he didn't know what to tell me. Suggested I ask my Primary Care, which is how I got here in the first place.
I'm starting to get used to being passed around because nobody knows what to do, but it's pretty discouraging anyways.
My next appointment was at the Women's Health Clinic because of my panhypopituitarism I make no estrogen. Well, I don't make any hormones, estrogen is just one of them. All of my other ones I have prescription replacements (thyroid and cortisol), and I take DHEA as the female testosterone replacement but I can buy that over the counter. (You want to increase your sex drive ladies? Take one of those every day. HOLY.) I was given birth control pills and told that would be good enough, have a great day. But then I stared to get daily migraines (which is the norm for me and birth control) and I can't live like that. I'd rather risk heart disease and bone loss over daily migraines, so I stopped taking it and flat out said you can't make me.
Turns out though, estrogen is super important. As soon as you have a dip in estrogen, your bones start to deteriorate and you're at risk for fractures. (Which could be serious when I start exercising again.) A lot of things in your body need estrogen so you really can't just stop, and because I'm so young (35), it's really not a good idea for me to just go cold turkey with the estrogen, so I need a replacement. She agrees that birth control is not a good option for me because it's so up and down through the month, I need something steady- that leaves me with patches. Not birth control patch, but just the estrogen patch for the older gal.
It also turns out my vagina wants to be in a commercial because you know those commercials about dry, papery thin vaginas? THAT'S ME. Turns out my vagina is now Golden Girl status so not only do I need the patch, I need the cream, too. And it wouldn't hurt to have a moisturizer.
You guys, they make a vagina moisturizer. IT'S AN ACTUAL THING.
She was a little concerned about the breast cancer history in my family and wanted me to get tested for the BRCA gene. She would have taken my ovaries out that day if I let her, said there was no reason for those to have been kept. I tried to say that removal isn't always the best option and it's kind of an old school thought and she was having none of it. She was going to call in my prescriptions but was shuffling me over to the teaching nurse for "review". I had no idea what that meant but that's fine, I'll go there.
Yeah, it turns out I had to have a full on demonstration on how to apply cream to your vagina. I watched her do it and then I had to do it to this very creepy and very lifelike vagina model to demonstrate that indeed, I can do it by myself.
Cross that off on my life's bucket list, y'all.
I left there feeling stupid, feeling frustrated, feeling like I don't ever want to go back. My entire drive home I thought about how I think I'm better off with my local team and only going to Mayo if something serious happens, or something gets significantly worse and I need another opinion. I saw someone from Mayo was calling me while I was driving, but since I don't use my phone when I drive, I ignored it.
I got home in time to go trick or treating with the kids. Matt was finishing getting them ready as I walked in, so I grabbed my mittens and went out with them.
The only picture I got and not everyone is looking. Don't let it fool you, Lucy cried almost the whole way and Penelope just wanted to eat everything as we went.
When we got home, I saw I had a message from Mayo, telling me I had to come in ASAP for labs before they could call in my estrogen patch. I returned their call and asked if I could just do the lab here and have them send it, because I'm not driving 3.5 hours one way for ONE LAB. That's insane. They said no, they don't like that.
So I told them to pound sand. I'm not doing it.
Fortunately, I see my primary care next week so I'm going to ask her. By then she'll have the notes from Mayo so she'll see their recommendations. So right now, I'm estrogen-less still but I have my cream! I haven't used it yet because I feel weird about it. To be honest I have to look it up online and read more information on it because that's the problem with Mayo- they bombard you with information and it's overwhelming, you feel pressured to agree with them and go blindly in. I don't normally second guess doctors but with medication, I do. I'm on so much of it that I'm nervous about adding more to my stack. So I've got a few days to get some questions written down to ask my doctor here what she thinks. She's pretty great and I trust her, so I'm going in hopeful.
1 comment:
Crazy they would want you to drive all the way back for lab work. That's just dumb. I'm sure your regular doctor can take care of that!
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