SANITY IS MADNESS PUT TO GOOD USES.
~George Santayana, Little Essays

Wednesday, February 12, 2020

Finding Joy

I put off writing this post for quite some time. It's been a roller coaster of emotions with more downs than ups. I wanted to write the post while I was up but could never stay up long enough to write it. I then decided to be real. Some people will comment that I have so much strength and I am always so positive. Guess what? Sometimes, I'm not strong and I can be pretty negative. I cry, I swear, and I scream. I start getting upset about unrelated things around me because I'm frustrated over the whole thing (just ask my family). I know it doesn't help and I know there are people in A LOT worse situations but sometimes that's just what happens.

I have really struggled these past couple of weeks. I am now deficient in the rest of my pituitary hormones. The deficiency of my thyroid hormone has also caused myopathy and shortness of breath. My doctor was holding off on putting me on thyroid medication hoping that it would come back up but we have waited long enough. I have not noticed any difference with the thyroid medication but my doctor said it would take some time finding the right dose.

My doctor told me we would start to wean off the steroid (hydrocortisone) as soon as possible but it's not looking like that is going to be anytime soon. Body image now has become a huge issue for me. Not something I ever thought would happen. I literally cry most days when I look in the mirror as I'm getting ready. And then I feel shame for crying over the outward appearance of my body. It quickly turns into a downward spiral. My husband suggested we go an buy some clothes that fit my body better but I'm terrified it will just make things worse. So, I keep stuffing myself in my current clothes and continue to feel gross. So, obviously, self-love and appreciation for my body, no matter the size,  is something I need to work on.

I belong to a small group of people with lymphocytic hypophysitis on Facebook. They are a very supportive group. Something that I have noticed is many of them lost more or all of their hormones after their biopsy surgery and they have never returned, even after several years. As far as I know, my doctor still believes my hormones will return but I'm also trying to come to grips with the reality that they may not. I recently read a quote that says:

"Sometimes you have to let go of the picture of what you thought it would be like, and learn to find joy in the story you are actually living." - Unknown

I keep waiting for that "light at the end of the tunnel". Now I'm realizing, there may be no "end". This may be it and I have decided to try and find joy in my story that I'm living NOW. As you can see, that's not happening right now and it might not even begin to start for a while. It will also always be an ongoing process and never something I can just check off my checklist. So, there's something else I'm going to work on.

I also have another goal I want to share. I signed up for the Utah Valley Marathon more than a year ago. I was supposed to run it last year but deferred it to this year because of my health at that time. So, this race has been on the calendar for far too long. Right now, it is difficult for me to exercise but I'm doing it the best I can. For me, finishing this race would mean this disease that has been plaguing my body did not win. So, that's the goal. I am going to run/walk/crawl and finish the Utah Valley Marathon on June 6th! Training starts next week. It's not going to be easy so keep me going friends!




 

5 comments:

  1. Wow! You really are amazing. I know you just do what you have to <3

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  2. People tell me I’m strong, and I just see it as “not giving in.” Sometime we should get together and really talk! Basically, you do what you have to do and be as positive about it as possible. Like you said, some days it’s hard to be positive.
    But I know that with God, nothing is impossible. Here’s a quote that helped me through a really hard decision aa few years back:
    “The thermostat on the furnace of affliction will not have been set too high for us — though clearly we may think so at the time. Our God is a refining God who has been tempering soul-steel for a very long time. He knows when the right edge has been put upon our excellence and also when there is more in us than we have yet given.” Meal A. Maxwell
    I do love and admire you. - Mary Parker

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    1. Thank you so much Mary! We do need to get together and talk. Love you!

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  3. Attribute that quote to Neal Maxwell....



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