Injection day

Amused

Ha ha! Sitting in bed reading when I happened to gaze over to my bulletin boards. Tibetan prayer flags, wind chimes, bells, overflowing sock drawer. And on the bulletin boards: lymphatic chart, yoga positions chart, #notnormal Resist sticker, Grumpy cat calendar page, Israeli Bandage (where I order 1st aid supplies, Valentine's Love card from dear friend, tiny pink boxing gloves, injection schedule, and dun dun the confirmation for that 5K in Oct.

WTF?????

Ha ha! Once again I get a call from the financial coordinator for oncologist. She's trying to get authorization from insurance for my injection that I'm supposed to have on the 6th. Need to postpone. What? Wait, WHO paid for the last injection????

If

If I had a million 

Yeah I had an entire post written but thanks to no-update-blogger I lost it. WTF?

Disability

So I had appealed the disability decision and suddenly received notice that I didn't need a hearing & they found me disabled. In between that I had had my Medicare stopped so I ended up with medical bills due to an arm infection and ER trip. So, with my previous insurance I had reached my out of pocket and now I get to start again. Happens quick with $3000/month injections. But I had to postpone 2 injections because of no insurance. I feel bad being on disability but I have worked hard my whole life and there's a big chance I won't collect my social security. Plus with the political climate now I'll take what I can get for as long as I can. Plus, the biggie, I get tired, wiped out, fatigued. My arms require care for the lymphedema. I figure if I totally comply there's 1 hr for each arm on the compression pump, 6 hrs apart. Plus wrapping/unwrapping: about an hour. Plus putting on compression sleeves every morning: 15 min.

I asked the oncologist if there was a cheaper option just in case I lose insurance again. He said no, not in that class of drugs. Tamoxifen failed. Anastrazole failed. Faslodex is the next...until it fails.

In closing I'd like to say I hate hearing that people on disability are scamming the system. Yeah, that $900 a month is paying for my cruises. Uh, not. It's paying medical bills. And I would like to say to anyone who bitches about people on "welfare": I will gladly switch places with you. Work 60 hrs a week? I've done it. Take my cancer and we're even??

Pointy elbows

Pointy elbows. I used to have them. Before the cancer, before the lymphedema. Now I get all excited if I can FEEL my elbow. Most days the epicondyle area hurts (had to look it up). If I don't wear my sleeves during the day it's ok until the arm starts to ache. Swelling is extra bad if I'm tired or don't wrap at night. I just happened to notice elbows while standing in line at a store. I think heat makes my lymphedema worse. Because, remember I wear "long sleeves" all summer.

There is a clinical trial on now called Ultra. A statin drug has been found to be effective in treating the swelling! It has been used in Japan for years as Bestatin. As soon as I heard that I was online checking Japanese drugs. I was ready to fly there, ah I wish. At least I was checking to order drugs on sketchy websites. 

I also read yesterday that Ketoprofen helps. That's a pain killer stronger than ibuprofen. And my scientific mind goes off...

https://med.stanford.edu/news/all-news/2017/05/study-finds-first-possible-drug-treatment-for-lymphedema.html

Any readers????

If not I'll end the blog. Blogger has made it difficult to use on mobile. Plus if no one gives a crap I'll just write in my journal. It was for me anyway.

I'll prob make one more post about mental health issues & one on discontinuing treatment then quit.