Endocrinology Update-- Mixed News

[Sangye]

I saw my endocrinologist for a follow-up visit this week. We had re-tested my adrenal function and it was not so great. My adrenals are functioning, but nowhere good enough to try to taper the hydrocortisone yet. The plan is to wait another 6 months and retest. If the adrenals are working better we'll try to taper again. She said it can take a long time to wake the adrenals up again and is not surprised by my numbers.

Still, 6 months. I feel pretty discouraged. It's not like I feel good or even decent on this dose of HC, or on steroids at any dose. And there's this long chain reaction that the steroids maintain. While I'm on them I can't lose weight. If I can't lose weight the increased intracranial pressure persists, which is a problem by itself but also keeps me on a diuretic. If I can't lose weight the lower extremity swelling is much worse, which keeps me on a second diuretic. And if I can't lose weight I have sleep apnea (though it's still undiagnosed), which makes me exhausted, increases the risk of other conditions and ironically, prevents weight loss. Being exhausted means I can't exercise or function much..... You see how it goes. "Another 6 months" feels like a prison sentence.

And there's another stupid twist: I just finished rtx, which starts wearing off in about 7 months. So just when we'll (hopefully) be tapering the HC, the Wegs will be waking up, making it impossible to tell if symptoms are due to the HC-taper or Wegs activity. This is upsetting, to say the least. I'm gonna have to just ignore my hopes and fears and stay in the present moment, even though right now I really just want to cry.

[Brooke]

Hi Sangye - I haven't posted in a while but still read some posts here and there.
I am sorry you are feeling so lousy, please stay strong and have hope that things will improve as I'm sure they will! I know it seems like a long and bumpy road but just look at where you have been at in the past. Big hugs to you!!!

[Sangye]

Thanks Brooke. I just don't feel very optimistic right now. Things haven't improved in a long time. My last rtx infusion was on June 26, making it 6 years since being dx'ed and being able to work. It really got me down.

[Brooke]

I understand, it is hard to stay positive and be optimistic when you are feeling so crumby. My thoughts are with you and I hope you start feeling better very soon! We are all here for you to express your thoughts, anger, worries and whatever else is on your mind.
Not trying to shine the light on me, but I have some good news of myself, I am pregnant! Just found out on July 5th.

[Sangye]

Wow! I'm so happy for you, Brooke! I know how long you two have wanted a second child. Due date?

[Brooke]

Thank you Sangye. Due date is March 18th. Instead of trying fertility medications, we decided to do Intrauterine Insemination, did that on June 25th.

[pberggren1]

If I was there Sangye I would give you a big hug and not let go.

Congratulations Brooke!

[Jaha]

Sangye,

I really am sorry that you don't have good news. This all stinks, it is like being on a rollercoaster ride that never stops. Up and down,up and then back down again. It's enough to exhaust one the emotional parts of wegs and the constant changing of tx plans. I know you have had a very hard 6yrs and I am only on 2yrs of this **** and am already so tired and completely drained at times. You are an inspiration to me, to go on fighting this ugly battle.Please stay strong and know how much you have helped others along your journey. Pet and love on your dogs, that always makes me feel a little better. Hang in there!
Jana

PS Congrats to you Brooke!

[Sangye]

Thanks so much, Jana.

[Al]

Oh, Sangye. Such a bummer. So much of this crap is a raw deal that it would be nice, once in a while, to get some good news. I presume you tell your dogs all that is going through your mind. (We care, too, of course, but they get to see you more often!) Please keep telling us your feelings....

Al