Friday, December 1, 2017

Finally!! Some good news. And cream.

So you may remember back in September I went to Rheumatology for the first time and I felt like this doctor was nice but clearly thought I was crazy. She did a bunch of blood work which showed I'm fully out of whack and nothing makes sense.

No shocker there.

The most alarming thing was finding out that I might have antiphospholipid syndrome, which is a clotting disorder that's rare but dangerous. I checked off two of the three boxes, "significant event" (my AFE) and then a wonky blood test. The procedure is to wait approximately 12 weeks and test again, if you get two positives- ding ding ding- you are a clotting disaster waiting to happen. I have been on EDGE the last 12 weeks because that kind of thing is scary. On the other hand, I was kind of hoping I did have that because then I could maybe have a reason for my AFE and I wouldn't feel like I was a ticking time bomb. I've said this entire year that I'm not scared of a diagnosis, I'd rather know what is (good, bad, or ugly) because if I have a defined problem, I can fix it... or at least cope with it. The fear is walking around thinking I've got some other problem we don't know about, just waiting for another perfect storm to take me out like my AFE.

And maybe that doesn't seem rational or make any kind of sense to you, but it does to me.

This week I went back to rheumatology for a follow up and talk about my next step in regards to the Plaquenil that I'm apparently allergic to. I got a totally different feel from my doctor this time and I feel like she doesn't think I'm nuts, and that like all of my other doctors, she's intrigued by me because I'm a puzzle. I'm rare, I'm complicated, and nothing conventional really works because I have enough wrong with me that it changes things.

I'm a guinea pig everyone loves, basically. The class pet everyone is fighting over.

We do my exam, she orders a bunch of lab work, and decides my next stop is going to be Methotrexate and a Folic Acid supplement. I've heard a mixed bag of experiences with this so I'm worried, but I also want to feel better so that's winning over right now. I agree to give it a whirl and head over to the lab.

The lab is a nightmare. It's busy but my experience is that they move pretty quick so I wasn't worried. An hour into my wait I was starting to get worried. They finally call me back and I'm told they've got a student and am I OK with that? Oh sure. I'm fully supportive of students getting hands on experience so I can't remember ever turning them down. So as I'm sitting down I saw all of these vials on her counter and I said, "Wow- I'm glad I'm not that person!" and she looks confused, asks me to confirm my last name and date of birth and then says, "Oh these are for you! It won't be too bad."

Guys? It was 15 vials. FIFTEEN. My previous most was 12 I think, but 15? Good GOD.

Approximately six vials in she informs me that my vein has decided to stop all together. Nothing was working and after calling over the actual lab person for help, that person decided to just do my other arm because she didn't insert it correctly. Super. So she gets the other nine vials with no problem and did it really fast. I felt bad because it was almost 4 when I was leaving and there was still a room full of people waiting to be helped. Yikes.

But fast forward to my results!! You guys? I do NOT HAVE antiphospholipid syndrome! Woo Hoo!! I'm so excited to not have a "thing", you can't even imagine! On the other hand I'm a little disappointed I don't have to thing to point to and say, "maybe this is why I had an AFE!", but it's OK. That means I don't need more medication, and I can always get on board for that. Relief.

Oh but all good news has to be countered, right? So at my physical this month I spent a lot of time talking with my doctor about Mayo Clinic's suggestion for my estrogen replacement. They recommend I use an estrogen patch, progesterone supplement (to help maybe minimize the cancer risk of the patch), and then an estrogen cream because it's an added boost for your vagina and all of that.

She agrees I need to be on something and that this would be the route to go if I want to minimize migraines and daily headaches (I do), but there aren't a lot of studies that look at the long term effect of using such estrogen replacements at this age (35). Most studies focus on women in their 50's and beyond and it's "pretty safe". I'm taking a risk going this route at age 35, but the consequences of not replacing estrogen are pretty concrete and serious. So I decided I would do the replacements, hope for the best and never miss or put off a cancer screening, monitor my side effects carefully, and hope for the best.


Naturally, I had Matt pick up my prescriptions and I knew that the estrogen patches were going to be expensive. Those are around $82. My progesterone was around $60 (and that's SUPER important for me to take with all of this, absolutely NO missed doses) and I was surprised by that cost.

But the vagina cream? It's a tube of cream, you guys. It's not anything fancy.
$418!!! Can you even believe this?! It's like a tube of toothpaste and I need one gram twice a week. But this tube is $418!!!!! I can't even wrap my head around this.

I know what you're saying- "Sara, that's the retail price, what is it with insurance??". You guys, I pay 100% of my prescriptions until I hit my deductible, which is $4500 for me alone. So right now my monthly fee for prescriptions has exceeded $900 and that's assuming I don't refill everything. (Some stuff I don't use all of it in a month like my nausea pills and my migraine medicine, and the stuff I take to be alert and awake.) I will be paying almost more than my MORTGAGE for medications.

The hilarious part about all of this is that I used to laugh so hard at those commercials about dry and delicate vaginas because of menopause. Don't laugh, lambs. Dry and delicate vaginas are really horrible and you don't want to deal. Imagine a hundred tiny paper cuts in your vagina. It's like that. Brutal. This cream better make it like brand new for this price. Dang.

I guess the plus side is that now I have every hormone replacement taken care of. It's taken a year and it's not perfect, but it's something.

1 comment:

middlechild said...

I hope theae new meds help. I was on progesterone for my period of Biblical proportions. (I'd had it for 40 days and 40 nites) I never felt as good/normal before or since. The cost of creams/ointments is crazy. My sister can attest to this. I imagine THAT'S why I'm avoiding goeing to the dermatologist. My eyes are blurry so forgive any typos. Here's hoping the meds work. (Karen Andraski)