Friday, April 3, 2015

Doctor Update

Okay, friends. I try to be very open about my health journey - not because I'm looking for sympathy, but because I hope that maybe I can help or encourage someone who might be struggling with a scary diagnosis, and because it helps me when I write about it. So here goes...

Last week, I had my three month checkup with the rheumatologist (we are on three month maintenance now instead of one or two - woooo!) and the very next day my annual physical with my general practitioner. I did this back to back appointment thing very deliberately because I wanted all that information to be fresh in my brain when I went from one doc to the next.

I’ll start with the rheumatologist.  My blood work came back GREAT, he said it looks like I’m leveling out and that maybe “we’ve seen the worst of it”.  Hallelujah, time to celebrate!  This means that the medications (Hydroxychloroquine as a disease modifying drug to mask my symptoms and amlodipine for the Raynaud’s) are working, that my anti-inflammatory, mostly paleo diet is putting out the fires of inflammation in my body, and I’m getting sufficient exercise and rest.  Big thumbs up. He also said I was lucky I didn’t flare from my photosensitivity after all my sun exposure during our Caribbean vacation a few weeks back even though I was SUPER careful - sunscreen all the time and fully covered, even in the water. Tsk tsk. We made a plan for the transfer of my care to a new rheumatologist in State College after the move at the beginning of August, and I will see him one more time at the end of June.  I was feeling pretty good after that visit, but I always forget about the long-term consequences of my disease, even when it’s managed, because we are focused on the immediate and the near future as it relates to my blood work.

The next day I went in for my annual physical with my general practitioner.  I haven’t seen her since that terrible day last May when I showed up with a strange UV burn on my legs and she sent me to the rheumatologist with what she believed was lupus.  She is SO sharp, and I am beyond thankful that she read my symptoms so well - the fact that she caught my connective tissue disease that early has made all the difference in their ability to manage it without steroids.  Most doctors wouldn’t have caught it for another several years, when I would have been living with full blown Lupus.

One of the things I love most about my GP is that she plays straight with me - she doesn’t gloss over anything and everything is up for questions and discussion.  So here’s what was new this time - she believes that I have the start of arthritis in my hands. I had no idea that it wasn’t normal to have joints in my hand that are always sore - it’s been that way as long as I can remember! Rheumatoid arthritis also happens to be a connective tissue disease and is best friends with lupus. They are so close that they actually use the same exact blood test for both diseases (and Scleroderma, too) and then diagnose which disease you have based on your symptoms. Often, you can have symptoms from all three diseases that fall under the umbrella of "Connective Tissue Disease". She chastised me for not getting my eyes checked yet, because the hydroxychloroquine that I’m taking to suppress my symptoms is notorious for damaging the eyes.  She followed that, however, by saying it’s still the best medication option as it’s the least toxic of all the disease modifying drugs.  (!) I am now seeing the optometrist at the end of this month, promise.

This is where it gets hard: we talked about the possibility of Jason and I having a baby in the future.  My rheumatologist had said it was a possibility down the line, but would need some serious planning, it was not recommended anytime in the near future, and when the time came we could talk about it.  My ob-gyn told me it was possible but I would now have to be treated by a specialist for High-Risk pregnancies.  But, my GP, honest and straightforward as always, recommended that Jason and I speak with a high risk pregnancy doctor before we make any decisions about having a child of our own. She said that I would have to come off of the hydroxychloroquine (toxic to the child), and would likely be on prednisone for the entire first two trimesters of my pregnancy.  (I can’t sleep when I take steroids...) I could not remain on it for the third trimester, and would likely deliver very early.  It is indeed possible to have a baby, but she recommended that if we were going to do it that I be pregnant for the end of my graduate program, and plan to deliver that summer or early in fall, as I would be 35, almost 36 at that time.

I truly appreciate having that information because it will help Jason and I make a more informed decision going forward. We are going to wait and see how I do with the stress of my first year of graduate school, and then see the high risk specialist at that time and make some decisions.  But dang, it is so hard to hear that.

Some days I feel so broken - like my body has betrayed me.  I’m not going to lie, it just sucks.  Eternal optimist that I am, though, hope for healing always wells up in me.  And, honestly, if I know how to do anything, it’s adapt - I’m great at it, so at the moment I’m working on adapting to the lifestyle I need to survive graduate school.

Speaking of, my GP had some words for me on that as well.  She reiterated what Jason and I already knew - that my health and well-being has to come first.  I absolutely cannot shirk on my exercise, yoga, meditation, sleep, or diet because the first thing that will go is my health.  If I want to graduate from my program, I have to put myself first, and if something isn’t finished, then it isn’t finished. Period.  She told me to do what I have to in order to eliminate any unnecessary stressors - like paying someone to clean the house, doing all my meal planning/prep on Sundays, etc... and to remember that school is my ONLY job while I’m doing it.  If I can do those things, I will make it through.

She must recognize my type - I have always been willing to go the extra mile and put the stress on myself to keep others from being uncomfortable. That has always come at the expense of my health. Even after that conversation with my GP, I found myself this weekend (literally three days later) making a crazy plan to keep everyone (but me) happy, one that would likely have been detrimental to my physical well being because of the stress.  My mother-in-law immediately said, “Didn’t you JUST have this conversation with your Doctor? You cannot physically do that!”  And she was absolutely right, I can’t.   Learning that is going to take some time, as I’ve been putting my health after everyone else's comfort since I was fifteen.

Please continue to keep me in your prayers. I will continue trying to make the right choices for the benefit of my body, and put into regular practice all these things that will keep me healthy.

So, for you guys out there: Please take care of your body because you only get one, and there are NO guarantees.

1 comment:

  1. Erin, you are amazing. I'm sorry you are going through all of this but I am glad you have such an awesome support system (family, doctors) and so many things you love and care about. I wish I could give you a big hug and a paleo muffin. Xoxoxoxo Molly