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!
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, 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.
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
🙄 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)
👍🏽 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!!!
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…
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 🙂