Interview with Alicia, a Cushing’s Message Board member who is still testing. Alicia writes “But my life has changed significantly since my last interview, and I could talk about losing my job and applying for Social Security at such a young age. And the issues about self-esteem tied to a career, and risk of depression and isolation. Let me know…will be right after my disability medical screening, I should have lots to talk about!”
I first saw a similar image to this one with the saying Life. Be in it at a recreation center when my son was little. At the time, it was “Duh, of course I’m in it”.
The original image was one a couple males, a couple females and a dog walking/running. No folks in wheelchairs, no older folks and certainly no zebras.
It would be nice to have everyone out there walking or running but that’s not real life, at least in the Cushie world. It’s been a long time since I’ve really been In My Life – maybe it’s time to get back.
A dear friend who has not one, but two forms of cancer was traveling throughout Europe for the first time after her husband’s death wrote:
Some final words before I turn in for the night. If there is a spark of desire within you to do something which is not contrary to God’s Holy Law, find a way to make it happen. All things are possible and blessings abound for those who love Him. Life is such an adventure. Don’t be a spectator – live every single moment for Him and with Him.
Somedays, it’s hard even getting up in the morning but I’m trying. I’m taking Water Aerobics for Arthritis and I try to go to class 3 times a week (I only miss for doctor appointments). I got a couple “part-time” jobs several years ago, my son and I will play at Steinway Hall in NYC again in June. We have plans to go to the Norfolk International Tattoo again this weekend (I’ll miss water aerobics this Friday).
This is the one and only life I’ll ever have and I want to make the most of it, to the best of my ability!
Over the years, we went on several Windjammer Barefoot Cruises. We liked them because they were small, casual and were fairly easy on the wallet.
They sailed around the Caribbean to a variety of islands, although they sometimes changed itineraries depending on weather, crew, whatever. One trip we were supposed to go to Saba but couldn’t make port. A lot of people got off at the next port and flew home.
The captains were prone to “Bedtime Stories” which were often more fiction than true but they added to the appeal of the trip. We didn’t care if we missed islands or not – we were just there to sail over the waves and enjoy the ride.
The last trip we took with them was about two years before I started having Cushing’s problems. (You wondered how I was going to tie this together, right?)
The cruise was uneventful, other than the usual mishaps like hitting docks, missing islands and so on. Until it was a particularly rough sea one day. I was walking somewhere on deck and suddenly a wave came up over the deck making it very slippery. I fell and cracked the back of my head on the curved edge of a table in the dining area. I had the next-to-the-worse headache I have ever had, the worst being after my pituitary surgery. At least after the surgery, I got some morphine.
We asked several doctors later if that hit could have contributed to my Cushing’s but doctors didn’t want to get involved in that at all.
The Windjammer folks didn’t fare much better, either. In October 1998, Hurricane Mitch was responsible for the loss of the s/v Fantome (the last one we were on).
All 31 crew members aboard perished; passengers and other crew members had earlier been offloaded in Belize.
This event was similar to the Perfect Storm in that the weather people were more interested in watching the hurricane change directions than they were in people who were dealing with its effects.
I read this book and I was really moved by the plight of those crew members.
I’ll never know if that hit on my head contributed to my Cushing’s but I have seen several people mention on the message boards that they had a traumatic head injury of some type in their earlier lives.
Myth: “You should be all better by now! You found out what was wrong, you got the surgery, it’s been quite some time, and you are STILL not better?! You SHOULD have gotten better by now!” Chronic illness follows the same pattern as normal illness. You get diagnosed, treated, and then go back to a state of recovery, eventually leading you back to a state of “normal health”.
Fact: Chronic illness is called chronic illness for a reason, because it is chronic! Wayne Dyer addresses this myth: We usually expect to follow a pattern that is characteristic of most illness. “The person has an illness and falls from the path of normal health. Then, comes a period of diagnosis and treatment followed by a period of convalescence (the general recovery of health and strength after illness). Finally, the person returns to good health again” (p. 251).
The person is supported, typically, by family, friends, neighbors, and their church community during the illness, treatment, and recovery, assuming that at some point the person will return to normal health and their assistance will no longer be needed (p. 251).
However, in the case of the chronically ill, a different cycle occurs. In the chronically ill, the person loses his normal health. He goes through a period of treatment and sometimes recovers. “But for a number of reasons, depending on the illness, the person does not return to a condition of normal health but continues in a fluctuating pattern of chronic ill health. The person may have periods when he feels better or worse, but at no time does he ever return to complete good health.” (p. 252).
According to Dyer (1990), “Unfortunately, family members, friends, and neighbors do not know how to respond to this unfamiliar pattern, and they usually shift their attention away from the chronically ill person as others with the more normal cycle of sickness occupy their attention” (p 252). At this point, the person with the chronic illness feels a lack of support, understanding, and help. This can lead to increased pain, depression, and anxiety.
It is very difficult for family members, such as spouses, to deal with the person with chronic illness. “Chronic illness can disrupt and pide a family, or it can provide the family with an opportunity to grow in understanding, patience, sacrifice, and love for one another” (Dyer, 1990, p. 256).
For the chronically ill person and his family, the friends, neighbors, and church can either be a source of support and help or elicit feelings of neglect, rejection, and misunderstanding. Most people help at the beginning of the illness, but then become confused when the person doesn’t get better, so they withdraw their attention (p. 256).
Here are some ideas for helping the chronically ill person and family:
• Discuss in some detail with the person how his illness is affecting him and his family and find out what his needs are
• Make short visits to not overtire or over stimulate the patient
• Send a card or make a short phone call to the sick person
• Look for ways to help with young children
• Send a small gift
• Avoid saying things to make the person feel pressured such as “I hope you can come back to church every Sunday now”
• Don’t ask, “What can I do to help?” People don’t like to have to ask for support. Express sensitivity and go ahead and do something (p. 258).
I finally started the Growth Hormone December 7, 2004. Was the hassle and 3 year wait worth it? Stay tuned for tomorrow, April 22, 2017 when all will be revealed.
So, as I said, I started Growth Hormone for my panhypopituitarism on December 7, 2004. I took it for a while but never really felt any better, no more energy, no weight loss. Sigh.
April 14, 2006, I went back to the endo and found out that the arginine test that was done in 2004 was done incorrectly. The directions were written unclearly and the test run incorrectly, not just for me but for everyone who had this test done there for a couple years. My endo discovered this when he was writing up a research paper and went to the lab to check on something.
So, I went off GH again for 2 weeks, then was retested. The “good news” was that the arginine test is only 90 minutes now instead of 3 hours.
Wow, what a nightmare my arginine retest started! I went back for that Thursday, April 27, 2006. Although the test was shorter, I got back to my hotel and just slept and slept. I was so glad that I hadn’t decided to go right home after the test.
Friday I felt fine and drove back home, no problem. I picked up my husband for a biopsy he was having and took him to an outpatient surgical center. While I was there waiting for the biopsy to be completed, I started noticing blood in my urine and major abdominal cramps.
There were signs all over that no cell phones were allowed so I sat in the restroom (I had to be in there a lot, anyway!) and I left messages for several of my doctors on what I should do. It was Friday afternoon and most of them were gone 🙁 I finally decided to see my PCP after I got my husband home.
When Tom was done with his testing, his doctor took one look at me and asked if I wanted an ambulance. I said no, that I thought I could make it to the emergency room ok – Tom couldn’t drive because of the anesthetic they had given him. I barely made it to the ER and left the car with Tom to park. Tom’s doctor followed us to the ER and instantly became my new doctor.
They took me in pretty fast since I was in so much pain, and had the blood in my urine. At first, they thought it was a kidney stone. After a CT scan, my new doctor said that, yes, I had a kidney stone but it wasn’t the worst of my problems, that I had kidney cancer. Wow, what a surprise that was! I was admitted to that hospital, had more CT scans, MRIs, bone scans, they looked everywhere.
My new “instant doctor” felt that he wasn’t up to the challenge of my surgery, so he called in someone else. My next new “instant doctor” came to see me in the ER in the middle of the night. He patted my hand, like a loving grandfather might and said: “At least you won’t have to do chemotherapy”. And I felt so reassured.
It wasn’t until later, much after my surgery, that I found out that there was no chemo yet that worked for my cancer. I was so thankful for the way he told me. I would have really freaked out if he’d said that nothing they had was strong enough!
My open radical nephrectomy was May 9, 2006 in another hospital from the one where the initial diagnosis was made. My surgeon felt that he needed a specialist from that hospital because he believed pre-op that my tumor had invaded into the vena cava because of its appearance on the various scans. Luckily, that was not the case.
My entire left kidney and the encapsulated cancer (10 pounds worth!) were removed, along with my left adrenal gland and some lymph nodes. Although the cancer (renal cell carcinoma AKA RCC) was very close to hemorrhaging, the surgeon believed he got it all.
He said I was so lucky. If the surgery had been delayed any longer, the outcome would have been much different. I repeated the CT scans every 3 months, just to be sure that there is no cancer hiding anywhere. As it turns out, I can never say I’m cured, just NED (no evidence of disease). This thing can recur at any time, anywhere in my body.
I credit the arginine re-test with somehow aggravating my kidneys and revealing this cancer. Before the test, I had no clue that there was any problem. The arginine test showed that my IGF is still low but due to the kidney cancer I couldn’t take my growth hormone for another 5 years – so the test was useless anyway, except to hasten this newest diagnosis.
So… either Growth Hormone helped my cancer grow or testing for it revealed a cancer I might not have learned about until later.
My five years are more than up now. In about 3 weeks I will be 12 years free of this cancer! My kidney surgeon *thinks* it would be ok to try the growth hormone again. My endo says maybe. I’m still a little leery about this, especially where I didn’t notice that much improvement.
May 4, 2017 ~ My endo at Hopkins and I talked about maybe trying growth hormone again. We tested my levels locally and – surprise – everything is low, again.
So, we started the insurance routine again. My insurance rejected the growth hormone I took last time around. I just love how someone, a non-doctor who doesn’t know me, can reject my person endocrinologist’s recommendation. My endo who specializes in Growth Hormone, who runs clinical trials for Johns Hopkins on “Control of growth hormone secretion, genetic causes of growth hormone deficiency, consequences of growth hormone deficiency.”
That insurance person has the power over the highly trained physician. Blows my mind.
But I digress. My doctor has agreed to prescribe Omnitrope, the insurance-guy’s recommendation.
June 14, 2017 ~ I got a call from my insurance. They “may” need more information from my doctor…and they need it in 72 hours.
My doctor’s nurse says that they have to refer this to their pharmacy.
June 15, 2017 ~ I got a call from the Omnitrope folks who said they will need approval from my insurance company <sigh> but they will send me a starter prescription of 30 days worth.
June 16, 2017 ~ I got a call from the Specialty Pharmacy. They’re sending the first month supply on Tuesday. Estimated co-pay is $535 a month. I may have to rethink this whole thing 😦 We sure don’t have an extra $6000.00 a year, no matter how much better it might make me feel.
June 19, 2017 ~ The kit arrived with everything but the actual meds and sharps.
June 20, 2017 ~ The meds and sharps arrived along with the receipt. My insurance paid nearly $600 – and they took my copay out of my credit card for $533.
I still have to wait for the nurse’s visit to use this, even though I’ve used it in the past.
I’ve been doing some serious thinking in the last 24 hours. Even if I could afford $533 a month for this, should I spend this kind of money on something that may, or may not, help, that may, or may not, give me cancer again. We could do a couple cruises a year for this much money. I’ve pretty much decided that I shouldn’t continue, even though I haven’t taken the first dose of this round.
April 22, 2018 – I have been on the GH for nearly a year. I don’t feel any better, any less tired, haven’t lost any weight. The only change I notice is that I find myself more chatty, and I don’t like that. I’m thinking of going off this again after I’ve given it a year.
A long-time member of the Cushing’s Help message boards, AutumnOMA , gave me permission to share info about these wonderful Cushing’s Awareness Stickers she has made:
CUSHING’S AWARENESS RIBBON STICKERS ARE HERE and you can get your own!!!
April is CUSHING’S Awareness Month. In honor of raising awareness, I decided to use my original Cushing’s Awareness Ribbon art to create a sticker.
In 2005, just after my pituitary surgery, while I was at home recovering and suffering thru the weening process, I decided to create an artful awareness ribbon that spoke to the beauty within each Cushie Warrior. This is why…
Cushings’s changes us. Emotionally, spiritually and physically. It takes a toll. I felt wounded beyond my medical issues. I no longer recognized my own face staring back at me from the mirror. My body took on a form of its own that was unrecognizable to me. My heart and soul ached for what I had lost because of this disease. I felt judged on appearance alone. I forgot who I was. I forgot how to see past the physical things that I couldn’t control and the daily pain. I forgot the carefree beauty of simply being alive.
I had struggled for years for a diagnosis and almost lost myself, my mind and everything I held dear. But I had made it through to the other side. Diagnosis and surgery – finally! But it was still difficult. I needed to know that I could find my inner strength to keep at it. I had to trust in my own strength and resilience to adjust to changes and find joy in the life I had. I had to believe that I had not endured what I had for no reason.
The simple truth of the matter was that I wasn’t sure how to do any of that. It felt too big; too hard. The only thing I knew with certainty was that if I could be brave enough to share my story and help raise awareness for the rare disease I was living with, maybe I could help one person…and helping one person – just one person- know they were not alone…well that was reason enough to try.
And so I set out to raise awareness and hopefully offer support to other by means of sharing my journey.
The first thing I decided was that I wanted an awareness ribbon to wear. I wanted to proudly display (like all those pretty little pink ribbons that are everywhere) that I too survived a life altering disease and I did it with little support.? There wasn’t a large Foundation like Komen, raiding money to find a cure for me. Heck, Doctors didn’t even know what Cushing’s was, let alone the vast majority of the public in general. But I wanted to pin something pretty on my shirt. I wanted an awareness ribbon that embodied hope and beauty. I wanted to wear a ribbon that would inspire people to ask me what it stood for. And so…I made my own.
As an artist, I like to create things that make me feel something. I like to create from a place of inspiration that feels good and comfortable to my soul.
I used to think that flowers, cut, in a garden or otherwise were a waste of time, effort and money because the bloom and die so quickly. But what I came to realize was that was what in fact made them so special. No matter how short the length of time they were around was, they still grew and bloomed into a spectacular show (even if for just a short while) and brought smiles and beauty to the world. What a wonderful gift to be grateful for.
For me, flowers never fail to make me smile. They are fragile, but but resilient. They are colorful and happy. They freely give their beauty for all to enjoy…they were perfect in my mind for an awareness ribbon. And from that thought came the piece of art that is the Cushing’s Awareness Ribbon or blue and yellow flowers.
I am very proud of it. And I am proud to offer these stickers with my art ribbon to help raise awareness.
These stickers are 2.5”x2.5” full color vinyl circles (approximately the size of your palm.).
Profits made from the sale of these stickers will be donated to help fund organizations that work hard to offer continued support and help for those struggling with Cushing’s – whether that be getting a diagnosis, making it through recovery or learning to live with the changes the disease brings about in our lives.
If you would like to purchase stickers please see the attached picture that include all the details about pricing and payment.
Here’s to us all remembering our inner beauty and finding a way to let it shine despite this disease…or maybe because we have this disease and realize how amazing we are as survivors!
I have seen this image several places online and it never ceases to crack me up. Sometimes, we really have strange things going on inside our bodies.
Usually, unlike Kermit, we ourselves know that something isn’t quite right, even before the doctors know. Keep in touch with your own body so you’ll know, even before the MRI.
I asked doctors for several years – PCP, gynecologist, neurologist, podiatrist – all said the now-famous refrain. “It’s too rare. You couldn’t have Cushing’s.” I kept persisting in my reading, making copies of library texts even when I didn’t understand them, keeping notes. I just knew that someone, somewhere would “discover” that I had Cushing’s.
Finally, someone did.
These days, there’s no excuse to keep you from learning all you can about what’s going on with you. There are your computer, books and the internet. Keep reading and learning all you can. You have a vested interest in what’s going on inside, not your doctor.