I really liked Jessica’s list, so I decided to make one of my own.  I was looking in my blog for what I wrote already about Psalm 116 and found out that I already did a very similar list in September 2009.  Talk about bad memory!

30 Things About My Invisible Illness You May Not Know

1. The illnesses I live with are: Cushing’s Disease and kidney cancer (renal cell carcinoma). I also have secondary adrenal insufficiency as well as a growth hormone deficiency. I had pituitary surgery on November 3, 1987 and had my kidney cancer (kidney and adrenal gland) removed May 9, 2006.  Having my adrenal gland removed acerbates my post-op pituitary issues. My one remaining adrenal gland doesn’t work well and I cannot replace my deficient growth hormone because I had cancer.

November 21, 2015:  I haven’t added anything much to this list – HOORAY!  OTOH, nothing has gone away, either.  

A couple days/nights a month, I have unexplained, random itching.  It could be on my foot, then jump to my stomach, then anywhere. It keeps me awake at night and is very annoying.  I originally had this in menopause and I’m very annoyed that it has come back.

I mentioned this to my endo last year because of the possibility of “hormone withdrawal” and he said I should probably talk to my PCP about this, and that it could be “serious”.  I haven’t yet because I don’t like the possibility of tracking down some other dread, unknown disease.  According to that great doctor, Wikipedia: 

Causes of formication include normal states such as onset of menopause (i.e. hormone withdrawal). Other causes are medical conditions such as pesticide exposure, mercury poisoning, diabetic neuropathy, skin cancer, syphilis, Lyme disease or herpes zoster (shingles). Formication can also be a result of stimulant intoxication (e.g. methamphetamines, cocaine) or alcohol withdrawal in alcoholics (i.e. delirium tremens), and is often accompanied by visual hallucinations of insects.

Also, I’ve been having terrible swelling, and pain in my left ring finger.  I will see my PCP about that on Wednesday after having this for about 8 months or so.  I looked up the possibilities on Dr. Google and there are too many to contemplate.  I hope it’s not arthritis.  I already know I can’t take meds for that.

September 25, 2023 – I’m able to take growth hormone injections – Omnitrope – again but I don’t see it making any difference.

In March of 2023 I had a total left knee replacement after many steroid injections and one series of hyaluronic acid.  I documented all that in another of my blogs. I am expecting to do the right knee possibly in the fall of 2024 but I’m putting it off as long as possible.

February 3, 2025 I had a total right knee replacement.  It was “easier than the left but I developed an allergy to something which is yet unknown and I had a terrible itch rash for about a month.

2. I was diagnosed with Cushing’s in the year: 1985; adrenal insufficiency in 1999; GH deficiency in 2004 and kidney cancer in 2006.

November 21, 2015:  Somehow, I forgot that I was diagnosed with osteoarthritis in the early 1980’s and took NSAIDs for about 30 years.  Those are another kidney cancer no-no.

In April of 2021 I had a Mohs Surgery for Squamous Cell Carcinoma.  A description and photos are available here: https://maryomedical.com/2021/05/09/the-mohs-nose/

 

3. But I had Cushing’s symptoms since: 1983 for sure.  Looking back, I can trace some other symptoms to the 1970s.

 

4. The biggest adjustment I’ve had to make is: Sleeping so much.  When I say I have to sleep, that’s it, no matter where I am, no matter what I’m doing.  From the cancer – not being able to take my arthritis meds.

 

5. Most people assume: I am completely healthy.  I had surgery, so everything is fine.  I am, however, lazy.

 

6. The hardest part about mornings are: getting up.  I could sleep until at least noon if I didn’t have an alarm AND something specific to do.  It’s also hard to get my joints so they work.  Sometimes I have a hard time standing.  I have a footed cane beside the bed to help me get up.

November 21, 2015:  I seem to be getting up earlier.  I have an issue with a joint on my ring finger, left hand.  It often throbs at night and wakes me up.

2023-2024, I seem to be waking up about 1 or so.  I guess because my 2-3 hour naps, my body is treating bedtime as just another nap.

2024-2025. I’m waking up about 3 and doing some online work, then napping for about 30 minutes to an hour until my alarm goes off at 9

7. My favorite medical TV show is: House.  I started watching it because an episode about Cushing’s was loosely based on a Cushie I know.

November 21, 2015:  House doesn’t seem to be on anymore so I no longer have a favorite medical TV show.

 

8. A gadget I couldn’t live without is: Wow, so many. My iPhone is the main one with a few others very close.

November 21, 2015:  iPad now.

 

9. The hardest part about nights are: Staying asleep.  I’m always tired but I often have to get up to go the the bathroom.  Then, I often have trouble getting back to sleep.

November 21, 2015:  Dreams, some scary, some that just play like endless loops until I get up.  I still get up for the bathroom, too. Pain, sometimes that itching. 

 

10. Each day I take __ pills & vitamins: Not much.  I only take Cortef and lisinopril/HCTZ.  I used to take a lot of other meds but, due to having only one kidney, I can’t take much of anything, including vitamin C, aspirin and NSAIDs.  I pray I don’t get headaches anymore!

November 21, 2015:  Nowadays, it’s only the Cortef.
If absolutely necessary, I take Alavert for allergies and Benadryl if I’m in an itchy pattern; Tylenol for headaches.  

Because of the cancer, I can’t take Growth Hormone any more.

September 25, 2023 – I’m able to take growth hormone injections – Omnitrope – again but I don’t see it making any difference.

 

11. Regarding alternative treatments I: have to clear anything I take or do with my kidney cancer surgeon so it’s easier to just not take anything.

 

12. If I had to choose between an invisible illness or visible I would choose: What I have.  While I wish people would understand better, I don’t want anyone to feel pity or single me out.

 

13. Regarding working and career: I’ve been fortunate – I’ve been a piano teacher forever and I can control my hours to get in naps when I need them.  I could not work a 40-hour job.

November 21, 2015:  I still teach piano, although it’s hard to play now due to that joint issue.  I also am webmaster for my church, for my husband’s company and the Cushing’s sites.  I also inherited my friend’s menopause site when she died.  So, there’s a lot of stuff to do, but I can still work naps in.  I still could not work a normal work day.

September 25, 2023 – I still teach piano, am the Director of Communications for my church and keep the Cushing’s sites going – sort of.  I still take a lot of naps.

 

14. People would be surprised to know: that I have trouble dealing with so many things.

 

15. The hardest thing to accept about my new reality has been: that I can’t be the Energizer Bunny any more.  No project days where lots of stuff gets done.

 

16. Something I never thought I could do with my illness that I did was: start a website and support group to help others.

 

17. The commercials about my illness: NONE!

 

18. Something I really miss doing since I was diagnosed is: I miss Sweet Adelines.  I loved the singing, the dressing up in sequins and false eyelashes to sing before huge crowds.  Almost like being on Broadway.  I also miss playing violin in a local orchestra.

January 2024, I bought a silent e-violin so I can start practicing again without bothering my 100-year-old mom. In March I joined a balalaika orchestra!

In 2025 I’m sill playing with the balalaika orchestra

19. It was really hard to have to give up:my arthritis meds.

 

20. A new hobby I have taken up since my diagnosis is: Naps, sleeping.

 

21. If I could have one day of feeling normal again I would: I cannot even imagine.  I could join a gym again, although for only one day it wouldn’t do much.  I could commit to doing something in the afternoons without napping before.  I could get some of my house tidied up…

 

22. My illness has taught me: a lot about hormones, glands, medical terms and… HTML.  I almost think I could have gone to med school if I’d had the stamina.

 

23. Want to know a secret? One thing people say that gets under my skin is: “Oh, my friend’s dog (or cat/horse/ferret) had that [Cushing’s].  The vet just gave the dog some pills and she was fine.  GRRRRRRRRRRRRRRRRR!

 

24. But I love it when people: listen to me when I try to tell them a bit about Cushing’s, even if it is a dumbed-down version.

February 15-16, 2024 I had the opportunity to be in both Fair Oaks Emergency Room and the hospital in Fairfax, VA.

Whenever a nurse/medical tech mentioned steroids, I asked what they knew about Cushing’s. One asked if it was a medication. DUH!

Needless to say, none were very Cushing’s-savvy. So, I gave them all the abbreviated version of my Cushie Story.

I think (and hope!) that they will all remember the day that they met a real live Cushing’s patient.. 

My left knee surgey was supposed to be in early January 2025 but it was snowed out.  Because it was rescheduled for more than a month later, I had to redo some testing.  I was amazed that the doctor in the walk-in clinic knew about Cushing’s although she’d never met a real one in the wild.  I spent a lot of time talking to her.

25. My favorite motto, scripture, quote that gets me through tough times is:

Psalms 116:

“1 I love the LORD, for he heard my voice;he heard my cry for mercy.

 

2 Because he turned his ear to me, I will call on him as long as I live.

 

3 The cords of death entangled me,the anguish of the grave came upon me;I was overcome by trouble and sorrow.

 

4 Then I called on the name of the LORD:”O LORD, save me!”

 

5 The LORD is gracious and righteous;our God is full of compassion.

 

6 The LORD protects the simplehearted;when I was in great need, he saved me….”

 

After I was finished with the long diagnostic process, surgery and several post-op visits to NIH, I was asked to give the scripture reading at my church. The man who did the sermon that week was the survivor of a horrific accident where he and his family were hit by a van while waiting at an airport.

 

I thought I had written down the verse carefully. I practiced and practiced, I don’t like speaking in front of a crowd but I said I would. When I got to church, the verse was different. Maybe I wrote it down wrong, maybe someone changed it. Whatever. When I read this Psalm aloud, I just started crying, it so spoke to me and my situation.

 

Another reading I love is:The Best Day Of My Life by Gregory M Lousignont

 

“Today, when I awoke, I suddenly realized that this is the best day of my life, ever! There were times when I wondered if I would make it to today; but I did! And because I did I’m going to celebrate!

 

Today, I’m going to celebrate what an unbelievable life I have had so far: the accomplishments, the many blessings, and, yes, even the hardships because they have served to make me stronger.

 

I will go through this day with my head held high, and a happy heart. I will marvel at God’s seemingly simple gifts: the morning dew, the sun, the clouds, the trees, the flowers, the birds. Today, none of these miraculous creations will escape my notice.

 

Today, I will share my excitement for life with other people. I’ll make someone smile. I’ll go out of my way to perform an unexpected act of kindness for someone I don’t even know.

 

Today, I’ll give a sincere compliment to someone who seems down. I’ll tell a child how special he is, and I’ll tell someone I love just how deeply I care for her and how much she means to me.

 

Today is the day I quit worrying about what I don’t have and start being grateful for all the wonderful things God has already given me.

 

I’ll remember that to worry is just a waste of time because my faith in God and his Divine Plan ensures everything will be just fine.

 

And tonight, before I go to bed, I’ll go outside and raise my eyes to the heavens. I will stand in awe at the beauty of the stars and the moon, and I will praise God for these magnificent treasures.

 

As the day ends and I lay my head down on my pillow, I will thank the Almighty for the best day of my life. And I will sleep the sleep of a contented child, excited with expectation because know tomorrow is going to be the best day of my life, ever!”

 

When I’m feeling down, depressed or low, reading this and “my” Psalm can help me more than anything else.

 

26. When someone is diagnosed I’d like to tell them: Learn everything you can about your disease.  You know more about your body than anyone else.  If your doctor tells you something that you know to be wrong about *you* – get another doctor!  Don’t waste your life getting good care for yourself.

 

27. Something that has surprised me about living with an illness is: how intolerant other people can be and the discrimination that I have run into, such as not being included in some activity just because my physical limitations would make it inconvenient for them to deal with accommodating me.

 

28. The nicest thing someone did for me when I wasn’t feeling well was: trying to understand that I wasn’t just fat and lazy, I really had medical issues going on.

 

29. I’m involved with Invisible Illness Week because: I like people to know that just because someone looks healthy, they may not be.  There are lots of people out there with invisible illnesses who need understanding, compassion and, possibly, help.

 

30. The fact that you read this list makes me feel: like you’re really interested.

 

The 2009 version was pretty close!

Thanks for being interested enough to read this!