❓Has Cushing’s Affected your Job or Quality of Life?

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?

❓Guest Question: Rife Machine

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

American scientist Royal Raymond Rife invented the Rife machine. It produces an energy similar to radio waves.

Rife’s machine built on the work of Dr. Albert Abrams. Abrams believed every disease has its own electromagnetic frequency. He suggested doctors could kill diseased or cancerous cells by sending an electrical impulse identical to the cell’s unique electromagnetic frequency. This theory is sometimes called radionics.

Rife machines are Rife’s version of the machines used by Abrams. Some people claim they can help cure cancer and treat other conditions like Lyme disease and AIDS.

From https://www.healthline.com/health/rife-machine-cancer#claims

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.

 

✍️ Day 20: 40 Days of Thankfulness

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

✍️ Day 22: 40 Days of Thankfulness

 

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/

 

❓Guest Question: Sudden Hearing Loss

 

If you can help, please respond here or on the Message Boards.  Thanks!

I  have many symptoms of cushings,  I have used cloatasol propionate for about 5 years for my chronic eczema I was on oral steroids in July then high dose steroids again in September. thejuly in July it was for a severe eczema breakout and in September it was for sudden hearing loss.  Now I need a hearing aid.  I seen one place after googling that connects cushings with sudden hearing loss.  Has anyone dealt with this?

 

⁉️Remembering Last Year’s Growth Hormone Fiasco

Today, I’m grateful that there have been no more Growth Hormone problems like the one below.

 

 

Wednesday, October 25, 2017, 11:08 PM on Facebook

Me: My $450 monthly co-pay refrigerated medication was overnighted to me yesterday, arrived a couple miles from my house at 7:05 this morning. UPS couldn’t get it to me today so they’ll “deliver it tomorrow between 12:30-4:00” .If that ice is melted, the medication is ruined. I see angry phone calls tomorrow.

 

Friend 1: My Specialty pharmacy replaces it free of charge if that happens. Or at least that’s what they tell me will happen. I asked because our UPS driver is terrible.

 

Me: We’re on the phone with the pharmacy right now.

 

Friend 2: OMG, you have one of those copays too?
😡 (Part D? So you have the same donut hole joy we do in Jan/Feb?)
I hope the pharmacy replaces/handles it. “At least” it’s tracked, so clearly documented as being en route for too many hours.

 

Me: Yup. People not on Medicare can get this close to free.
😦
Still on the phone.
😦 I hate this, ummm, stuff.

 

Friend 2: Ditto. The drug companies can give it for $25/copay with private insurance, and some f’d up anti-kickback statute prevents them from doing the same for anyone on federal insurance, including Medicare, even when it’s under patent or otherwise has no generic (which is the point of the damn statute). 😡

The drug companies HAD (in our case, until this year) worked around it by funding independent patient copay programs to avoid the bad PR/increased regulation risks from being like Gleevec a decade ago (let’s bankrupt the cancer patients for whom this works and keeps them in remission indefinitely!), but at least with the myeloma oral chemos they’ve pulled their funding and the copay assistance programs have shut down, AND they’re raising the prices 20% (in the US, not countries that can legally, oh, bargain with pharm companies) to cover other drug failures. (I’m sure they’re hardly turning any profit at all, though, and the combined actions are totally 100% necessary. And I’m someone who *wants them* to turn a good profit so they’re incentivized, but come on. It’s absurd that the $$$ drugs that are a quick sub-q injections in an office building is fully covered by Part B and supplemental, whereas the “patient convenient” pills cost one $13k or so annually in copays.

 

Friend 2: But aside from my thread jacking rant (😳), I really hope you’re a) not entirely out right now, and b) it’s resolved at no additional cost to you or having to stay home again all day to sign for delivery.
😞

Me: We’re still on the phone
😦 This is the 4th person.
This person on the phone can’t guarantee that it will be still cold but is hesitant to send another shipment at no cost

Friend 2:
🙄 Will they send at no cost if it arrives ruined? Like, you can have a time stamped photo and video of melted ice, and the tracking info with a delivery time stamp?
😕
It should really come out of their insurance or likely-contract with UPS.

Me: Don’t know yet but they’ve added a 5th person on the line. This can’t be the first time UPS messed up a temperature-sensitive medicine.
Now they’re going to call back in the morning. (HAHA)
🤣

Friend 2: I *constantly* want an eyeroll reaction button on FB. Good luck, and as long as you don’t run out before it comes I do have faith that you’ll end up not-screwed! (It’s just going to cost you time and frustration vs a second $450.)

 

Me: Still on the phone. This is nuts. I have 1 more cartridge (about 15 days worth)

Friend 2:
👍🏽 to enough on-hand,
🙄
🙄
🙄 to the phone mess?

Me: Phone call is over, nothing resolved. 5 reps, a couple robots and background music.  To be continued in the morning…

 

Friend 3: I had that happen but it would have made it 3 days. I told them the cost and how long it could be in shipping. If they were to do as planned, it would be on them. They got a courier and I got it that night.

 

Friend 4: I would report it to whom ever you get the medication from . When I was getting a refrigerated medication they would never send them to arrive on a Sat.or around the holidays. They always made sure I got it next day Shipment !

 

Me: Mine is marked “next day” and they ship it by UPS Next Day Air Saver®

 

Me: I guess they saved the money but the Next Day got lost somewhere.

 

Friend 5: UPS explained to me that when the package is labeled “Air Saver” UPS can deliver the package anytime that day. If the package is labeled just Next Day Air, they have to deliver it in the morning. The problem is that the RXplan won’t pay the additional amount required by omitting the air saver.

 

Friend 6: Praying you get this mess resolved!!!

 

Me: Thanks!

 

Friend 7: This is what shipping insurance is for; it’s between the pharmacy and the shipper. ETA: only stable up to 24 hrs at room temp.

 

Me: Mine is only supposed to be between 2° to 8°C (36° to 46°F)

Friend 7: and starts losing potency quickly if not. Me: I know
😦

 

Friend 5: Mary, I had the same problem on a day Texas temperature was 104 degrees. UPS delivered my GH the correct day but after 7 pm. The medication was warm when it arrived. My specialty pharmacy gave me a hard time about it. I phoned the manufacturer and talked to a nurse on the support team who said the med needed to be replaced and to have the pharmacy contact her if needed. I called the pharmacy and argued with the pharmacist for 15 minutes. I asked him if he wanted to be responsible for my taking a medication that wasn’t safe. He finally agreed to replace it. The box with my med was only half covered by the cold packs, and the tracker didn’t show damage, so the pharmacy argued about replacement. I responded with the fact that those trackers are not always accurate. They can and do fail. If he had continued to argue, I would have insisted he talk to the nurse with whom I spoke.I called my insurance plan and complained about the pharmacy. If you call the manufacturer of your med, be sure to get the name of your contact there. Good luck. I’m sorry you have that hassle.

Friend 8: So sorry!! Hope it gets to you in good, COLD condition. What an aggravation for you.

 

Friend 9: Refuse it… they replace it

 

Me: This doesn’t require a signature so they usually just drop it and run. Luckily, we have a dog who will sound the alarm.

 

Friend 9: Oh and Ask for fedex delivery all of the time

 

Me: 4:31 PM. The “window” today was 12-4:30. It’s still not here and back on the phone.

 

Me: I forget to mention that it’s going to take 8 days to track this package. Egads!

 

Me: I had to leave. Tom sent me a text “Donna from last night Called at 5pm I told her we were now considering replacing Humana.They are declaring the package lost and sending a replacement shipment immediately.It will arrive by 10:30 am Friday”. We’ll see! Several hours of phone calls and 15 people on their side. Aarrgghh

 

Friend 2: I will say that FedEx has been really consistent with ours (which ironically would basically be fine if lost for a few days, aside from extreme temperature ranges), though the whole designated “morning” and “afternoon” windows are a joke. (“Afternoon” has come before 8 am, “morning” at 3:30pm…but always the correct day! Just irritating since it’s so regulated – next-gen thalidomide, all those birth defects – it *has* to be signed for.) In case they’ll let you request FedEx after this.
🙄

 

Me: Today’s meds are coming UPS again but it shows as “Out for Delivery” today. Then, again, it said that on Wednesday, too. The difference is today has to be signed for and it’s supposed to be here by 10:30 so I can take my mom to a birthday lunch.
1 hour, 15 minutes and counting…

 

Me: Success!

🚙 Cushie Car

From 40 Days of Thankfulness

 

Today, I’m thankful for my “Cushie Car”.

Since I started attending Cushing’s events, I’ve always tried to rent a PT Cruiser. There’s just been something about them that I liked.

A couple of years ago, after my son was out of school, I was getting tired of driving the Mom-Carpool-Van everywhere. I think my mom was getting tired of stepping up into it, too. She doesn’t drive anymore, so she relies on whatever vehicle I’m driving to get her to appointments. So, I was delighted when she offered to pay for part of it. She didn’t realize it was going to be bright blue, though. I think she was thinking of navy or something more dignified.

Anyway, I had the car picked out, and the exact color I wanted and set off to the car dealership with my specs. They told me that the Cruiser didn’t come in this shade of blue. I’m sure that they wanted to sell one of the colors they had on the lot.

I got back to them and told them that I found this car online and I could go get it myself. Suddenly the dealership was able to get it for me, too, so I won out. WooHoo.

I’m just loving this car. 🙂

From a Cushing’s get-together in Columbus, OH, 2007, the yellow version 🙂