It’s been a while

I have a few updates, things have just been so busy I haven’t had time to write.  I had an ACTH stimulation test on November 6th. They put in an IV and and they gave me synthetic cortisol and drew my blood after a half hour and again after an hour to see if it would stimulate the ACTH hormone. The test result came back good but not great. My doctor wanted me to keep taking the hydrocortisone. I haven’t been taking it since October 26th. I asked if I could stay off it and he said it was fine as long as I keep it with me just in case. I had another blood test to check my cortisol in December. It’s now at 9; still not back to normal but still going up!

I’m still having problems with the joints and muscles. I went back to the rheumatologist but it was not helpful. It continues to get worse. After a lot of research, I’m wondering if it’s steroid induced myopathy. I have read it can last a year! It has been very difficult to do daily tasks. I also spend time in bed struggling to go to sleep because my legs and arms are in pain. I’m learning to adjust. Some days are harder than others. Sometimes I get really frustrated and throw a little adult tantrum about how much my life has changed. Last Sunday I couldn’t get my tights on because I couldn’t bend my legs the way I needed to. It ended in ripped tights and tears. 

I do have hope that things will get better, I will get stronger, and I will have lots of lessons learned! 

2020 May Not Be That Bad After All!

I think we can all agree 2020 has not been the greatest. However, 2020 could be the year I get completely off my steroid.... maybe! I had blood labs done last week and got the results today. My ACTH (which stimulates cortisol production) level was 22!!! AND my cortisol level was a 3!!! I see my doctor again in 6 weeks and if my cortisol keeps coming up, I could possibly come completely off my hydrocortisone!! Best news I've heard all year! 

Goodbyes are hard

As I mentioned before, I tried to start where I first began with running with the Couch to 5k program. Yesterday I would have completed 6 weeks of the program. I got to the point I ran 20 minutes straight with no walking. Every minute was excruciating. My heart rate would be way over the "target heart rate" zone and it would not go back to normal several hours after running. My doctor had me try taking an extra pill I take to replace my cortisol. It didn't make much of a difference. He then thought it was dehydration because of my diabetes insipidus. It got to the point I thought, what am I doing? I'm not even enjoying this. I'm pretty stubborn, and when you tell me I can't do something I do everything I can to prove you wrong. And that's what I was doing. But this was not healthy. My body was trying to tell me to stop but I kept telling it to be quiet. So, as of yesterday, I finally listened. I officially decided to say goodbye to one of my greatest loves in life, running. Tears are actually falling down my face as I'm writing this. This may seem silly to some but running has been a huge part of my life for over 10 years now. It's saying goodbye to more than just the pounding of my feet upon the pavement. Running took me places around the country I wouldn't have otherwise traveled. Seeing a new place while running is completely different than any other mode of transportation. Running taught me I could do hard things and push my body beyond my wildest dreams. Most of my dearest friends I have made as an adult were because of running. I got therapy sessions at least 3 times a week with these friends. Of course, I'll still see them but it's definitely not the same and it will probably sting for a long time whenever running it brought up as a topic for conversation. Running defined who I was. It is usually the very first thing most people asked me about when they saw me. I was the RUNNER. I ran marathons, not only that, I ran the BOSTON MARATHON. Running made me special. My family room in the basement is decorated with a rack of 32 medals. Above it are even more running bibs. Running mugs are meticulously placed on the window sill. Heck, I made a BLOG about running. So, now what?? I don't know. I have found I can still lift weights, walk, and do water aerobics. I still want to be fit. I still want to be strong. But most of all I still want to be healthy.   

Happy News!

I got a call from my endocrinologist's MA (turned friend 😉) yesterday with very happy news. My ACTH level from my blood test that was done almost a month ago was an 8!! Since my surgery my levels have been 2-4. For those of you who don't know what your ACTH (Adrenocorticotropic hormone) does like I didn't two years ago, one of its jobs is to simulate your cortisol hormone. My current cortisol level is 0 without my hydrocortisone pills. My doctor has said I will most likely be on hydrocortisone for the rest of my life but if I can lower the dosage, that would be so awesome!

In other happy news, my exercise plan has been going well. I just finished up my 3rd week of the Couch to 5K program and have successfully done 3 days of strength training for 3 weeks as well! I'm losing weight very slowly (because of my crazy hormones) but I'm feeling success in other ways. Just being able to move my body again is a huge success.

The New, and Even Better me!

I just finished my first day of the Couch to 5K program (C25K). This is how I got into running many eons ago when my friends, Victoria and Emily, coerced me into training for a 5K with them. It got me hooked and I ended up running many more 5K to full marathon races (including my favorite, the Boston Marathon). I even ran two full marathons (Boston and Salt Lake) 5 days apart. Running used to be a huge part of my life. This past June 5th marked 2 years since the first day I woke up and knew something was not right. Since then, I have tried over and over to keep running apart of my life.  These past 6 months since my surgery have been the most difficult to keep it going. I've felt like I lost friends and even a part of me. It's been hard. As I said in my last post, I decided to mix up my exercise with no pressure this past month. It's been so great and much needed! However, I still missed running. I decided to give it one last go with C25K and have told myself if it really is time to let it go, I'm ready to work on that. It was an interesting feeling after finishing those 30 mins today and going back to where I started. It felt like I was starting over but as a new, even better version of me!

UPDATES:

Doctor -

I saw my OB/GYN on the 12th because I had a menstrual period at the beginning of the month. I don't produce my own estrogen and progesterone and I'm taking the replacement hormones every day and shouldn't have a period. He did an ultrasound and found my uterine lining is too thick which indicates I've got too much estrogen. He had me do a blood test to confirm. I saw my endocrinologist yesterday. He had me do blood labs last week. My growth hormone is still increasing so that's great news. My cortisol and thyroid still haven't kicked in but the replacement medication is doing its job. He hadn't received the ACTH so I don't know about that yet. My testosterone was at a 4 which could explain the extreme fatigue AND possibly my difficulty with running. I am already on a DHEA supplement but he is increasing it to the max you can take and if that doesn't work then we'll have to talk about testosterone cream. I'm really hoping the DHEA does the job. I will restest the testosterone in 6 weeks. As far as my estrogen, he said we can't test it with a blood test since I don't have a fully functioning pituitary. So, he told me to decrease the amount of estrogen I'm taking and go back to the OB/GYN. 

I asked him about what things look like long term now with my disorder. I will have blood work and see him every six months. I will have an MRI every year until I have a few in a row that look exactly the same and then they could be spaced out further. Of course, this could change if anything comes up in the meantime.

Noom-

I mentioned I starting using an app called Noom to help lose weight. I love it! I've lost about 8 lbs. I'm still fighting against all my hormone chaos so I haven't lost weight very fast but it's the only thing that I've been able to lose any weight at all doing. It has already started changing my relationship with food for the better. I love the psychological aspect of it. I think that is such a huge part of everything!

Corona 50? Not exactly.

Wow, it's been a while and with Corona it feels like even longer. MRI was done and reviewed by my Neurosurgeon. There was inflammation in different areas but he said it looked like they would expect it to this far out from my surgery. I will do another MRI check in a year. That was good to hear! My thyroid is back to "normal" with the help of medication. My ACTH is still low which in turn does not signal my body to make any cortisol. (Boo!) My growth hormone is still showing up as normal.

I have gained 50 lbs since this whole health journey began and THIRTY of those were since my surgery! It has been a real struggle, physically, mentally, and even economically (have to keep buying clothes when I need to go out in public). Also, when you used to be a runner, you have a lot of runner friends and most runners are pretty slender. I am literally the fattest one of the group I used to run with. It has made me so self-conscious. I feel like I have to somehow let people know that I'm the size I am because my hormones have gone wacko and not because I'm lazy or eat all the time. I hate eating anything in front of others other than a salad or something everyone has deemed "healthy". If I ate a cookie they might think "oh, THAT'S why she gained so much weight". So dumb, I know. I don't think many people intentionally think these things. To be honest, I've done it myself in the past. Going through this has given me a whole different perspective. What you see on the outside of a person does not tell you anything. Everyone has a story. Be kind.

Let's go back to running. Obviously, the marathon got canceled and I really lost my motivation to keep running. So many things have changed and I really don't find the joy in running that I once did. I do run a little here and there but I've started trying something different. I have committed to getting one hour of exercise in a day that can be anything. I walk, I run/walk, I hike, I bike, I lift. I'm really liking it. No pressure, no monotony, it's great. I'm also trying a new app called Noom that I also really like. It gives me some accountability and it also helps strengthen the mental part of it all which is so huge. Something unusual it has you do is weigh yourself every day. At first, I thought that was crazy. That it would make me a slave to the scale but it's done the opposite. It's helped me really recognize that weight goes up and down all the time and it's become routine which takes out the scale anxiety.

So what's next? My next appointment with my endocrinologist is June 22nd and we'll see what is going on with my hormones then. I'll let you know.

Good News/Not So Good News

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!)