This came up in the comments to https://cushingsbios.com/2018/11/17/jayne-in-the-media/
The question is
I dropped by this site because my friend’s daughter has Cushings and I wanted to learn more. Is there any chance that Cushings might be manageable or improvable in a way similar to what Izabella Wentz proposes for Hashimotos?
What do you think?
Krista shared her helpful doctor, Maria Fleseriu, in her bio.
| How would you rate your Helpful Doctor? | 5/5 |
| Your Doctor’s Name | Maria Fleseriu |
| Your Doctor’s Address | Street Address: 3303 SW Bond Ave City: Portland State / Province: Or Postal / Zip Code: 97239 |
| Your Doctor’s Phone Number | (541) 494-4314 |
| What are your Doctor’s Specialties? | Neuro-endocrinology |
| What are your Doctor’s Hospital Affiliations? | OHSU |
HOME | Sitemap | Abbreviations | Adrenal Crisis! | Glossary | Forums | Bios | Add Your Bio | Add Your Doctor | MemberMap | CushieWiki
Slowly but surely, we’re rebuilding the Cushing’s Member Map. The location where we hosted it previously started charging huge amounts of money, so it’s being moved here.
Add your information (or your doctor’s) at https://cushingsbios.com/2018/10/28/we-have-a-new-bio-form/ or below:
I would love to take one of the surveys mentioned in this news article. My Cushing’s went into “remission” just over 31 years ago but I still feel the effects of having had it.
Pre-Cushing’s I had no problem working a full day, having a piano studio overflowing with students, going out at night, cleaning the house, being a normal mom.
I could do as I chose – if I wanted to go somewhere, or do something, I just did.
Now, I work part-time and my studio is much smaller. Everything I do is to accommodate my nap schedule. I have to plan everything carefully so I can take my meds on time and be ready to sleep.
Even going to regular doctors is harder, explaining why I take cortisone and growth hormone, why I can’t take whatever meds they want to prescribe.
Discussing with a sports medicine doctor why I should (or shouldn’t) have a cortisone shot in my knee. (I went for it September 12! Now I’ll have to explain to my endo.)
Unfortunately, I also haven’t lost all my Cushing’s weight (probably at least partly my own fault LOL) and I still have to shave my chin every day.
I honestly believed that my kidney cancer was due to my taking growth hormone, which I take because of my pituitary tumor. Now, since I’m back on it, I’m not entirely sure – but who knows what else might be growing? Or maybe the different brand is better for me. Who can say?
What about you? How has your life changed due to Cushing’s?
This question came up on the message boards today: Anyone ever used a Rife Machine on Cushings syndrome?
My response:
I don’t think so – this is the first I have heard of a Rife Machine so I looked it up and found this info:
Quote
Anyone else? Have you heard of this for Cushing’s?
Frantbri, are you going to try it? If so, please keep us posted!
It would be great if something like this worked.
I hope I’m not jinxing myself but today I am thankful that I haven’t had any migraines for a while.
It’s not “just” not having migraines, but the fact that, should I get one, there’s nothing I can do about them anymore.
I used to get migraines quite often, a hormone thing probably. I spent lots of hours in a completely dark room, blocking out sound, trying to keep my head from pounding.
There was a long period of time that I had a migraine 6 days out of the week for several weeks. By accident, a friend asked me on a Monday if I had one that day and that started me thinking – why do I have them every day except Mondays? I figured out that it wasn’t a migraine at all but an allergy headache – I was allergic to the bath oil I was using Monday-Saturday. I gave that to my Mom and those headaches went away.
I still often get allergy headaches. Since my Cushing’s transsphenoidal pituitary surgery, I can’t smell things very well and I often don’t know if there’s a scent that is going to trigger an allergic reaction. In church and elsewhere, my Mom will be my “Royal Sniffer” and if someone is wearing perfume or something scented, she’ll let me know and we’ll move to a new location.
There’s a double whammy here – since my kidney cancer surgery, my doctor won’t let me take NSAIDs, aspirin, Tylenol, any of the meds that might help a headache go away. If I absolutely MUST take something, it has to be a small amount of Tylenol only. My only hope would be that coffee from Day Thirteen. And that’s definitely not usually enough to get rid of one of these monsters.
So, I am very thankful that, for the moment, I am headache/migraine free!
Adapted from
Today is the 31st anniversary of my pituitary surgery at NIH.
As one can imagine, it hasn’t been all happiness and light. Most of my journey has been documented here and on the message boards – and elsewhere around the web.
My Cushing’s has been in remission for most of these 31 years. Due to scarring from my pituitary surgery, I developed adrenal insufficiency.
I took growth hormone for a while.
When I got kidney cancer, I had to stop the GH, even though no doctor would admit to any connection between the two.
Last year I went back on it (Omnitrope this time) in late June. Hooray! I still don’t know if it’s going to work but I have high hopes. I am posting some of how that’s going here.
During nephrectomy, doctors removed my left kidney, my adrenal gland, and some lymph nodes. Thankfully, the cancer was contained – but my adrenal insufficiency is even more severe than it was.
In the last couple years, I’ve developed ongoing knee issues. Because of my cortisol use to keep the AI at bay, my endocrinologist doesn’t want me to get a cortisone injection in my knee. September 12, 2018 I did get that knee injection (Kenalog) and it’s been one of the best things I ever did. I’m not looking forward to telling my endo!
I also developed an allergy to blackberries in October and had to take Prednisone – and I’ll have to tell my endo that, too!
My mom has moved in with us, bring some challenges…
But, this is a post about Giving Thanks. The series will be continued on this blog unless I give thanks about something else Cushing’s related 🙂
I am so thankful that in 1987 the NIH existed and that my endo knew enough to send me there.
I am thankful for Dr. Ed Oldfield, my pituitary neurosurgeon at NIH. Unfortunately, Dr. Oldfield died in the last year.
I’m thankful for Dr. Harvey Cushing and all the work he did. Otherwise, I might be the fat lady in Ringling Brothers now.
To be continued in the following days here at http://www.maryo.co/
