top of page
Search

May 2023 - Full Set of Emotions

May 3, 2023 --- I had a genetic test done to determine if my heart failure is genetic. I guess not. This is good news for my kids!

◦•●◉✿No significant genetic changes (“pathogenic variants” or “mutations”) were found in your genetic test. However, your test did find a genetic change called a variant of uncertain significance (VUS) in one or more of the genes tested. When we see a genetic change, but are unsure of its impact on health, it is called a variant of uncertain significance.

Right now, there is not enough information about the VUS to know whether it causes disease or not. A VUS is a common type of result. We all have many genetic changes that do not cause medical problems. Most of the time, we later learn that a VUS is not related to disease risk.✿◉●•◦


May 10, 2023 --- Ever since I was diagnosed with heart failure, navigating the medical end of it has been an absolute nightmare!!! I learned early on you have to advocate for yourself because no one else will. I was blessed to have so many friends offer suggestions and help along the way.

It seems that every step of the way, just when I think everything is stabilized with insurance, prescriptions, and the like, I'm met with yet another battle. Honestly, it's pis$ing me off!!

The last time I had to pick up a prescription, the charge was suddenly over $100 when I've met both of my deductibles for the year. The time before that I didn't have a copay because it was $0. I spent over an hour on the phone with the prescription company a couple weeks ago and was told they would call me back. They didn't. I had to follow up AGAIN only to be told that something was reversed in my account and I would need to pay for the prescription to meet the deductible. Not only did I pay for that one, I also paid for 3 others and I have now been billed for other doctor appointments again.

I called for more CPAP supplies a week and a half ago that ship from Appleton and never arrived. I called them again today and first was told they shipped. Then was told they are in "limbo" and she needed to call purchasing and would call me back. That was almost 3hours ago now. And here I am....waiting. Yes, I have a mask but they are replaceable every 30 days due to wear. Filters for the machine are necessary to be replaced as well.

I've always been an open book and this is no different. This whole process is so stressful that I'm seriously done. I'd like to stop taking all of the meds, stop going to all the doctor appointments (I have 2 this afternoon) and go back to some kind of semblance of normal life again. This is month 5 of stress just over my health and I'd like to get off this healthcare nightmare of a roller coaster.

<End Rant>

May 14, 2023 --- This is 48. I've loved and lost a lot in my years. I'm grateful for who I have become and who I surround myself with. I have a beautiful family and some truly amazing friends. While I sometimes get dealt some truly shitty things my outlook remains positive. I know I'm exactly where I'm meant to be.

May 17, 2023 ---Shania Twain in Concert in Madison, WI---so unbelievably great!!


May 21, 2023 --- Most hilarious moment of the month...my husband trying on one of the wigs


May 28, 2023 ---So many years ago this photo was taken. We don't have many of you actually. You were never really big on photo taking. Here we are mom. 2 years without you now. Hard to believe. Seems like the years have flown by while other times it was a slow and arduous journey. Year two proved to be harder than year 1 for me personally. I felt like much of year 1 was shock and avoidance. Year 2 hit like a battering ram. I'm hoping perhaps that was the worst of it. This month has been the most difficult. My birthday fell on mother's day this year and that was rough. Onward and upward is the only way to go. I hope you're learning all the things and enjoying your time with loves lost. Say hi to dad and grandma and grandpa for me.



All reactions: 50Annette Gelinskey, Becky Ann and 48 others

0 views0 comments

Recent Posts

See All

My body has boundaries and I'm not a fan. Ugh.

I had to wait to post this until I was able to remove myself from the emotions. What a rough few days. I've shed a lot of tears over this. Unfortunately, it's not the first time nor do I think it will

コメント


bottom of page