The results of my blood tests came back. Here's the good news:
-Growth Hormone is back to normal!!
-Muscle test is back to normal!
-Thyroid level is still low but better
Now for the not so good news:
-Cortisol is still non-existent
-ACTH is still low
-Prolactin is high (more than double of normal)
The high prolactin was the most concerning to my doctor and doesn't make sense. So, he suggested we move up the MRI and have that done now instead of in June/July. He wants to get a look at the pituitary gland and especially the stalk to see if it has been affected. I agreed and have the MRI scheduled for next Tuesday, March 3rd.
Now for some more good news, I've been running! AND, I have a new running buddy! She is actually my doctor's medical assistant. Kind of a weird connection but it was definitely meant to be. We were both very into running before and are both trying to come back again. She is the sweetest ever and offered to train and run the marathon with me in June. 💗 (Love you Meagan!)
Monday, February 24, 2020
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!
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!
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