Cushing’s Help

💉 Helpful Doctors: California

MaryO Cushing’s Help, Five Star, Helpful Doctors, North Carolina , , , , , , , ,

Dr. Daniel Kelly, a board certified neurosurgeon, is Director of the Pacific Neuroscience Institute and Professor of Neurosurgery at the John Wayne Cancer Institute.

Considered to be one of the best neurosurgeons in the US and a multiple recipient of the Patients’ Choice Award, Dr. Kelly is internationally recognized in the field of minimally invasive keyhole surgery for brain, pituitary and skull base tumors.

He has one of the world’s largest series in endonasal surgery with over 2000 procedures performed including over 800 endonasal endoscopic surgeries, and over 2000 craniotomies for brain and skull base tumors. His current surgical practice encompasses the full spectrum of brain and skull base tumors, both benign and malignant, treated with minimally invasive and conventional approaches.

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❓Can You Help?

MaryO Can You Help? , , , , , , ,

I’m on my second round of GH (I had to stop the first time due to cancer). I’ve been on Omnitrope since 2006 and the threads inside my pen must have worn down – I’m having a lot of trouble injecting it now.

I insert the needle and have to balance on the edge of the countertop in the bathroom and sort of lean in. Has anyone else had to replace the pen? I told my insurance company who sends the actual drug and they said “not us”. I don’t know if my endo has to prescribe another “starter kit” or what.

I did find a website that will sell me a new one for $200 but I’d rather not buy one that way. I found nothing on the Novartis website about this, either :(

Anyone?

Please respond here or on the message boards.

Thanks!

😎 Letter to Cushies

MaryO Golden Oldie , , , ,

Originally posted on Facebook​​​​​​​ November 14, 2017:

To all my Cushie friends who are still dealing with this horrible disease, keep fighting, don’t ever give up, you will get better.  I told a very close friend of mine the other day, if I had the power I would heal everyone you today.  Cushing’s is a horrible disease, and unless you have been through it there is no way anyone could ever understand it.

After a year and a half  since my BLA and I am the healthiest, happiest person I have been in a very long time.  I am working out with a personal trainer once a week because I am determined to regain the strength I lost due to having Cushing’s for six very long years.   I have a long way to go and it is not going to happen overnight but it will happen.

I live each day to the absolute fullest and enjoy every minute of every day, I am so grateful to have made it through to the other side, not without some emotional and physical scars, but I made it none the less.

I think about and pray for all of you every day because without your knowledge and support I don’t know that I would have made it.

To those of you who are still on the boards please feel free to share this post and my story to everyone there.  I am sorry I don’t go on the boards any more, but as I said I didn’t make through without some emotional scars.

I love you all, god bless and be good to yourself always.

✍️ Day 20: 40 Days of Thankfulness

MaryO Uncategorized , , , , , , , , , , , , , , ,

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!

 

 

❓What Do *You* Think?

MaryO Can You Help?, What do you think? , ,

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?

💉 Helpful Doctors: Oregon

MaryO Five Star, Helpful Doctors , , , , ,

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

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✍️ Day 22: 40 Days of Thankfulness

MaryO Uncategorized , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

 

Today is the 38th 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 38 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.

In 2017 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 finally got both knees replaced.  The left in 2023, the right on February 3 of this year

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…

In early May of this year I got a cortisone injection in my right thumb.  Hopefully, this won’t turn into anything.

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/

 

❣️The Message Boards Turn 25 Today! ❣️

MaryO Uncategorized , , ,

Today  is the birthday, or anniversary, of the Cushing’s Help message boards.  They were started September 30, 2000 (The rest of the site started earlier that year on July 21, 2000)

As of today, we have 73,130 members who have made countless posts.

Find the message boards here: http://cushings.invisionzone.com/

⁉️ What’s on *Your* Medical ID?

MaryO What do you think? , ,

You do have one, right???

I loved the one that Natalie had and, after her death, I bought the same style as a way to honor her memory.

There’s room for 5 lines on there – not enough for everything but enough to get me through an emergency…and I have had some.

 

 

There’s also a line with my info number so when the EMTs call the tollfree number, they can get right to my complete info.

So – what do you have on yours?  Please share!

💉 Helpful Doctors: Oregon

MaryO Five Star, Helpful Doctors , , , , ,

Louise 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

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