Wow, that does sound hot for the PNW. It's 85 here today which is a welcome respite; we've also had a bunch of rain in the past couple of weeks. I've never been able to trim my own hair; I wish I could. Cara does a good job and she often trims her dad's hair, too. My hair is still all wild with weird lengths all over after growing out from chemo baldness. I want some length on it but I have to get all the chemo "curls" (which is actually just frizz) trimmed off. I want to get back to my grannie bun. The wrapping is a pain but not as awful as I expected. I'm hot-natured and I expected it to be really uncomfortable. The worst of it was how bulky the 5 layers of bandage is (basically a soft cast) and having limited movement in the arm/hand. I am a hand washing freak so having gauze wrapped around my fingers was making me crazy(er). I ordered some of those clear food service gloves from Amazon to wear over that hand when I have to wrap. Also, the supplies are astonishingly expensive; I spent about $80 on short-stretch bandages and gauze from Amazon, and I will need at least that much more. At least the bandages are washable and should last about a year. I'm hoping I won't need them very often but I don't want this crap to progress. As you know there is no cure for LE; it is a life sentence. Even the surgeries are mostly a crap shoot and a lot of insurance companies won't cover them at all. There is no way to quantify the results since LE is such an unknown... who will get it, the severity, etc. Sheesh; I'm boring myself with all this LE yammering.
Sorry you are having trouble with the L.E., but we are glad you are still with us, @Beth Gallagher. I know you have probably looked, but would any of these help?
Thanks, Don. I have tried several compression sleeves but I'm having trouble getting a good fit with off-the-shelf. (Custom sleeves are $500-$600 each and only last for about 6 months... not covered by insurance or Medicare. ) I think I have ordered (and returned) six of them so far. The sleeves are for maintenance after the initial swelling has been reduced by wrapping and exercise. It's all a big hassle but life goes on. To my way of thinking, it's a damn shame that medicare won't provide coverage for LE supplies, but will pay for a penile implant. Fully 40% of BC patients must deal with LE, and for the most part they are on their own. I have written to my representatives in Congress and actually received a very nice response from Senator John Cornyn. I could tell that he read my letter because he responded to the points I made. The other two representatives sent form responses "thank you for your correspondence, blah blah."
It has always annoyed me that Medicaid would have covered your sleeves in all probability, but Medicare, to which you contributed all your working life, will not. I have gotten responses to things from ONE of my representatives in Congress, but not much from the other two.
Interestingly, Cornyn mentioned that he is on the committee that is responsible for Medicare budgeting and planning (or whatever it's called.) He said that the cost of Medicare is astronomical and mentioned the percentage of the federal budget that it takes (but I have already forgotten). He also said that at the present rate of spending, the Medicare funding will be depleted by 2026 which sort of indicated to me that they are more interested in making cuts than adding more coverage for patients. I did appreciate his thoughtful response to me, though.
I suspect they are giving it to illegals, just as they are Social Security from reports I've read. $500 billion was also removed form Medicare funding by Obamacare to make it less obvious what they were doing. I don't know if Cornyn was complicit with that or not, but I suspect he was not. The Dems had enough votes on their own to pull it off.
Well, I will have to eat my words because this week I received a nice response from Brian Babin (Representative). His reply was much like Cornyn's about budgetary restraints, but he added that he was interested in discussing this and had attempted to call me, and asked me to call his office. We probably saw US Govt on the caller ID and ignored the call.
Our oldest daughter called earlier this week to say that she has Covid. She's sick but not terribly, but of course she has to stay home for a couple of weeks. Youngest daughter called earlier, all in a panic because she ran over a rattlesnake with the lawnmower. She only found half of him and was scared to empty the clippings bag. Since she lives 6 hours away there wasn't much we could do. I told her to carefully dump it into a large trash bag and keep her eyes peeled for the head. Then I told her to stop using the grass catcher and let the clippings mulch the lawn in the heat.
Yes. And he's my kind of guy. Here's a write-up on "GovTrack" that must have been penned by a Democrat.... https://www.govtrack.us/congress/members/brian_babin/412655
ya know, sometimes getting older is a bitch. But sometimes I have to laugh at the situations I get myself into and out of. I still think there are a lot of times I am in a sitcom. Like when I take a shower but that might not be G rated. It takes 40 minutes of creativity between the shower and getting dressed. Turning around without the cane is interesting. I don't have grab bars, but find finger holds without using the faucets or the door. Don't need a plumbing bill.
Guess I could have put this in the "pit" thread. I'm so freakin' bummed right now. I just got a letter from my oncologist at MDA, Dr. Naoto Ueno. He is LEAVING MDA in December!!! I feel like a ship adrift in the stormy seas. I believe that he saved my life and was always such a supportive and positive doctor; I'm just devastated. Of course, I'm happy for him; he has been selected to be the next director of the University of Hawaiʻi Cancer Center, so a very prestigious move. (Not to mention... Hawaii!!) Dang. I have an appointment with him on November 8 and now I'm worried that I'll see the PA and he'll be gone. He has been at MDA for 30 years so he probably has a lot of loose ends to tie up before leaving.