Tuesday, November 15, 2016

An Autoimmune Disease Update


Hey!

So Tuesday isn't my normal posting day, but I've made a special exception this week because I wanted to point you all towards a special guest post I did today for Stay Gold Autumn, one that's been in the works now for several months.

As longtime readers of my blog will know, I've been struggling with a rare autoimmune disease called dermatomyositis (sounds fake, doesn't it?!) for nearly two years now. Recently, Autumn (the lovely lady behind Stay Gold Autumn) was also diagnosed with an AI disease, and she's doing a special series from various bloggers who are dealing with (or who have dealt with) autoimmune diseases. And I'm so honored that she chose me to be one of the first to share!

So, make sure you click on over to her blog for the guest post!

After I sent Autumn my post, I suddenly realized something----

It's been a LONG time since I've done a proper update about my disease here on The Blog. In fact, the last legit update on the "status" of my disease was all the way back in March, with a brief side mention of the fact that I was still dealing with the side effects of the medication I'm on in a post I wrote in August.

Other than that, nada.

So, I felt like today was as good of a time as any to tell you all some exciting news---

I'M GOING OFF MY LAST MEDICATION AT THE END OF THIS MONTH!!!

I had a doctor's appointment a few weeks ago, and even though my doctor said it looked like I was "basically" in remission, there was still the faintest trace of a patch of red skin on my back that he wanted to be "sure" we got rid of as much as possible. So he extended my time taking methotrexate to be one month longer than we'd thought after the last appointment.

While this is definitely Big News (on so many fronts), it also comes with a nice little side dish of anxiety and worry--

What if, when I go off the medication, I experience another flare-up of the disease?

I mean, it's taken me a year and four months after a proper diagnosis and subsequent treatment to come this far---

What if within weeks of going off, I'm right back at square one?

These are the dark thoughts that occasionally circle around my head at night.

However, I can't live my life in fear or stress out about what may or may not happen. I just have to go forward, hoping for the best, and then deal with whatever comes up, when it comes up.

*But if everyone wants to keep their fingers crossed for me and say a few extra prayers in my behalf, I definitely won't complain!*

The fact is, this autoimmune disease has definitely set my life even further off course than it had been set off before. Already, Matt and I had been dealing with our total change in life plans when he didn't get into physical therapy school for the second year in a row, and then we were adjusting to being new parents. When the diagnosis hit, well, it was almost like we threw up our hands and just decided that we'd better stop planning anything, anymore.

That doesn't mean it's been easy though, even with the surrender of our life plan.

I've been fairly open with people that while I'm on methotrexate, Matt and I cannot try to have another baby. And these past few months, when seemingly everyone I know who had a baby around the same time as I did (and many, many who had babies afterwards) is already pregnant again, I have caught the tiniest glimpse of what it must be like for those women struggling with infertility.

And my heart aches for them.

Because now I understand just a little more---I understand that it's frustrating to have so much out of your control, to try and do so much right to take care of your health and your body and still struggle, to never know when (or if) what you want will ever be given to you.

The doctor has warned me that if (when?) I get pregnant again, it might trigger the exact same response in my body as last time (aka, my autoimmune disease rearing its ugly head).

But at least next time, I'll be more prepared. I'll know what's coming. I'll be able to start taking action sooner (although all medications that I've taken and know are successful will be totally off-limits if I get pregnant).

So it's still a little scary. It's definitely a lot of uncertainty.

But we'll deal with it, one step at a time.

For more posts on my autoimmune disease:
That Time Last Week When I Was Diagnosed with an Autoimmune Disease
She Ain't Heavy, But I Can't Carry Her
When Life Doesn't Go According to Plan
What It Takes to Not Gain Weight on Prednisone
Why I'm Doing an Elimination Diet During the Holidays
Oh, Happy News!


2 comments:

  1. I'll keep my fingers crossed AND pray for you ;)
    It is scary coming off of a medicine that you know worked for you & what your body will do without it can be a little nerve wrecking. But love your attitude....
    Like you said, at least now, you have knowledge of what your body does & you can catch signs earlier & know the best way to treat issues.
    I wasn't aware of this - but am always reminded everyone has something going on in their lives that is a struggle in some form.

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  2. That is amazing news! You are in my prayers often. I sure love you friend.

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