Wordless Wednesday 5/20/2020

Wordless Wednesday 5/13/2020

Wordless Wednesday 5/6/2020

Tuck and roll

Since being diagnosed with Lhermitte-duclos Disease and Cowden Syndrome I have met so many doctors. (It’s now par for the course.)

There have been 2 doctors that have changed me for the better. They have helped me find my voice I never knew I had! I’ll tell you what, 8 years later – since diagnosis – if I don’t care for XY or Z, I will tell you and your entire office staff. Managers too! 🤗

Anyway, I worked with both doctors for 8 years, which is so interesting to me. Just the timing of it all. Dr. F I saw until 2011 and Dr. B ended today.

I could go on and on about today’s doctor, which I may do in another post, but tonight I’ll just say that I had to say goodbye to her today. She’s moving on; and to be honest the future of healthcare, MY healthcare, scares that hell out of me. If I think things are rough for me to manage and navigate now – imagine 20 years from now? Gah.

But moving on to my point of this blog post, she thanked ME. For allowing her into my life. Huh?!

Blergh I tried to be strong but she killed me there. I feel like such a burden to most people I know: and for HER to thank ME just has me stunned. 😳

There are people who should and SHOULD NOT be in the medical field: and she is one of the few people who are in the right career. Her future patients will be beyond blessed to have her! 💕

I feel sad and kinda like a part of me is now missing. Just gotta be. Sad. Tuck and roll baby. Tuck and roll!

Over-freaking-whelmed

I’m feeling very overwhelmed. My anxiety is getting out of control and I even took an Ativan last night. That wasn’t the best decision as I’ve been awake since 2:15 AM. #fail

I’m not over the resentment and bitter anger I have towards the Disability “Judge” who denied my claim for disability.  I wish I could remember what he looked like and I wish I could run into him on the street.  I would give him a piece of my mind.

Managing a Rare Disease life is a full time job, obvi.  It’s quite difficult for me to keep my head above water, to remember when appointment/scan is coming up next, etc. etc.  Now, add to THAT stress the pressure of a full-time job, too.  Yes, I know how incredibly blessed I am to have been hired.  Yes, I know how incredibly lucky and grateful I am to have a place to go earn money.  Yes, I know all of this. Regardless of my knowledge it’s still very difficult for me. I try to put on a brave face, but I’m on the verge of a breakdown most days.

I try to make the conscious decision each day NOT to think of the brain tumors.  I think about my cats, my family, my car maintenance, finding a good book to read, etc.

But, I won’t lie and say I do it or that it’s easy.  These damn tumors have taken my confidence, (what little I had anyway.)

Walking into the job each day I feel like a fraud.  I feel like people are looking at me and judging me accordingly.  Granted, I haven’t told anyone (besides a select few) about my medical status because I know, I just know, that it would be used against me and I’d lose this job.

Now that I’ve come this far – lost other insurance, procedures got denied, had to get a new doctor, my other doctors weren’t covered for me to see, blah blah blah. I have to see this through ’til I’m dead.

Watched some news.  Going to exercise. Need to make a plan besides writing and reading blog posts all day.  Happy Labor Day!