by poolI haven’t written in awhile. After reviewing my previous posts, I am a bit impressed that I could articulate so well even during the worst of this recovery. Unlike some, I did not discover blogging or facebook support groups until six months into my recovery.

Since my last post, I have investigated hormone therapy a little. My endocrinologist does not want to do the testing or add hormone replacement as she believes some of the side effects may outweigh the benefits. I’m not sure if I agree but then again, the cynic in me has to admit that of all of the people recovering from this disease that I have met, very few, even the ones on growth hormone will admit that they feel wonderful and giving myself a daily injection isn’t my idea of a good time.

That being said, I have seen improvements over the past year. I now do yoga on a regular basis. My core, hips, legs, ankles are stronger. I go up and down stairs without holding railings most days and can even run up stairs. I’m still playing the trying to lose weight game. It’s getting really old. I just started a fitness challenge and hopefully that will spur me on to really watch my diet and exercise. I also started paddleboarding last year and really enjoy it. My balance is better (even with the numb feet) than most of the younger, supposedly stronger members of my family (yay me).

My doctor and I have played with my dosage of hydrocortisone since I was so despondent at my visit last April. At first the increased dosage from 15 mg to 25 mg. worked wonderfully. I noticed about six months out though that I was feeling the same on 25 mg. as I had on 15. I’ve been decreasing my dose to 20 and possibly to 17.5 since I don’t believe building up a tolerance to a higher level of steroids when it doesn’t seem to help in the long run is a good idea. Also my vitamin d levels have dropped even though I take a high dose weekly supplement. I’ve started using a sun lamp and hope to get those levels up as I’m sure that is what is causing me to drag. Additionally my doctor switched me from levothyroxine to synthroid hoping that might help. One additional bit of advice is the Greenstone generic is actually brand Cortef and seems to work better than other generic brands of hydrocortisone.

One of the very best things about this disease for me has been all of the wonderful people I have met both in person and online through facebook support groups. It is so wonderful to have the world wide web as a source of information sharing. The bonds I have with those whom I have this disease in common are very, very special. I hope anyone who has to suffer with a medical condition could find such support groups and make such wonderful, life long friendships.

If you’ve found this blog, thanks for reading. If you’re just starting on your journey, I wish you luck. Having a rare disease is not fun but it is life-changing and sometimes in very positive ways. I don’t know who I would be had I never got Cushing’s Disease but I like who I have become through the struggle.

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