Oct 29

Day 17: 40 Days of Thankfulness

 

Our son Facetimed Sunday, just to chat.

I am thankful that he’s doing so well for himself, has a wonderful new wife, has a good job, good friends, is a fine musician and that he’s not afraid to say he loves his parents.

 

We love you, too!

 

Oct 28

Day 16: 40 Days of Thankfulness

 

Today I am thankful for my church choir.  Last year at this time, the “low voice choir” formerly the Men’s Choir sang this:

 

 

I’ve had a long history with singing from the time I was a kid singing in the choir at my Dad’s church in Springfield, Mass.

In High School we had a great choir and it was the time before “political correctness” would have banned us from singing such wonderful classical music like Brahms’ German Requiem.

In college, as a music major, there were choirs and when we finally got to our current home, I joined Sweet Adelines.

I was a member of Sweet Adelines for 10 years, singing bass, before Cushing’s robbed me of that particular pleasure. SA takes lot of energy between rehearsals, performances, competitions, traveling. I just loved it but I couldn’t keep up.

My old chorus, but years after I left:

 

 

For a few years, I belonged to a local woman’s group but even that got to be too much after a while. There wasn’t the traveling or the competitions but rehearsals and performances cut into that energy.

A few years ago, our church choir director opened up the opportunity to sing for just the Christmas Cantata. No long-term commitment and only half the rehearsal time for about 10 weeks.

I hadn’t sung anywhere outside my car for about 10 years but, with trepidation, I signed up. Because of my bell-ringing and work with children’s choirs, I knew most of the other choir members and that made it a LOT easier on shy-me.

Christmas came and singing with the choir and orchestra was just fantastic. There was the invitation to stay, to become a part of the choir for good but I had my Cushing’s Interviews on Thursday nights and I couldn’t see how I could work all this in.

Then, the choir sang How Lovely Is Thy Dwelling Place from Brahms’ German Requiem and I was hooked. How could I not join?

 

 

So, I moved the interviews to Wednesday nights and Thursdays are free for choir rehearsals.

 

Oct 27

Day 15: 40 Days of Thankfulness

 

Today I am thankful that the skunk already passed by when I took Mimi out for a walk a couple days ago!

It’s so not fair! I can’t smell lots of flowers or perfumes but I can smell a skunk blocks away.

 

 

 

 

 

Oct 26

Day 14: 40 Days of Thankfulness

I am thankful, believe it or not, that I had Cushing’s. Mind you, I wouldn’t want to have it now, although diagnoses and surgeries seem “easier” now.

 

Having Cushing’s taught me a lot, including how to stick up for myself, how to read medical books to learn more about my disease, how to do web design, how to navigate NIH. It taught me patience, how to make phone calls. It brought me a lot of new friends.

 

I am also thankful that people are becoming more empowered and participating in their own diagnoses, testing and treatment. Things have changed a lot since my surgery in 1987!

 

 

When I had my Cushing’s over 30 years ago, I never thought that I would meet another Cushing’s patient in real life or online. Back then, I’d never even been aware that there was anything like an “online”. I’m so glad that people struggling with Cushing’s today don’t have to suffer anymore thinking that they’re the only one who deals with this.

 

Because of my work on the websites – and, believe me it is a ton of work! – I have had the honor of meeting hundreds of other Cushies personally at local meetings, conferences, at NIH (the National Institutes of Health in Bethesda, MD where I had my final diagnosis and surgery). It occurred to me once that this is probably more Cushies than most endocrinologists will ever see in their entire career. I’ve also talked to countless others on the phone. Amazing for a “rare” disease!

 

I don’t know what pushed me in 1983 when I first noticed I was sick, how I got the confidence and self-empowerment to challenge these doctors and their non-diagnoses over the years. I’m thankful that I didn’t suffer any longer than I did and I’m glad that I have a role in helping others to find the medical help that they need.

 

Oct 25

Day 13: 40 Days of Thankfulness

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)
đŸ€Ł

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:
đŸ‘đŸœ 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 SaverÂź

 

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!

Oct 24

Day 12: 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!

 

Oct 23

Day 11: 40 Days of Thankfulness

 

Today, and every day, I am thankful for coffee. Without it, I would have a daily headache and I’d have even less energy than I have now.

 

I first started drinking coffee when I had my first job as a waitress at a Hayes-Bickford in Boston, MA. This was a summer job. A bunch of my college friends had gotten an apartment near Fenway Park in Boston and most of us were waitresses in various places.

Hayes-Bickford was marginally better than a dive.

I was fortunate that I was the youngest waitress at that Hayes-Bickford, so I got the best tips.

This was a l-o-n-g time ago – I’d get out of work sometime after midnight, take the Boston subway alone to our apartment, with an apron full of my tips, mostly in jangly change. That could never happen anymore!

Even without the money, I still wouldn’t wander around the Boston Common area of Boston alone after midnight.

We were right around the corner from the “Combat Zone”.

According to Wikipedia “The Combat Zone was the name given in the 1960s to the adult entertainment district in downtown Boston, Massachusetts. Centered on Washington Street between Boylston Street and Kneeland Street, the area was once the site of many strip clubs, peep shows, X-rated movie theaters, and adult bookstores. It also had a reputation for crime, including prostitution.

I’m sure my parents would have had a fit if they’d known where I was working!

The food at HB wasn’t so great. Sometimes, a patron would order some type of meat and the chef would say we were out of it, to put gravy on whatever-we-had and tell the diner that it was what he had ordered. We were usually out of a lot of things.

But the coffee was good and I learned to drink it, lots of it, and black, something I still do today. If I could do the IV thing, I would!

 

 

Oct 22

Day 10: 40 Days of Thankfulness

 

This is going to sound really stupid but today I am thankful for my dropbox.

I have files all over the place and I work on them on different computers (PC and Mac), at home or at work, on my iPhone, iPad and other places. If I’m away from home without any files (rarely happens!) I can still access my stuff online and do with it whatever I want.

I am really lazy and it’s so nice to have my files synced everywhere. I don’t have to try to find a cable, zip drive or SD card. Sometimes I’ll find an image or a program I want to install on a different computer and I just stash it in my dropbox. When I’m done, I delete it or move it to its permanent home to save space on the dropbox.

I had the free version for many years and was always monitoring how much space is available. I finally upgraded to a paid version when I had a lot of files for work – and a friend’s entire website backed up.

This really makes my life a little easier and, for that, I’m very thankful today!

 

Oct 21

Day 9: 40 Days of Thankfulness

Oct 20

Day 8: 40 Days of Thankfulness

 

Today, I am thankful for Saturdays.  It’ the one day of the week I don’t have to be anywhere, do anything.  I can do webwork, if I want, but I don’t have any deadlines.

I never have doctor appointments on Saturdays, no medical testing.

No piano students.  I don’t even talk to prospective students on Saturdays.

It’s a day for maybe brunch, a trip to the farm, maybe a little TV, maybe (most assuredly!)  a nap.

Saturdays are family days, even though our family is smaller than it was.

Saturdays are always full of promise.

Off to see what today’s promise is…

This blog post is posted from Cushing’s & Cancer at http://cushingshelp.blogspot.com/

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