Blessings

Tuck and roll

/ hopeforheather / 2 Comments

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

/ hopeforheather / 6 Comments

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!

Daily Prompt [Swallow]

/ hopeforheather / 7 Comments

During church this morning I experienced an upsetting emotional moment which made me swallow hard and really take a look at things in my life right now.

I have a calling in Primary and I love this time so much.  But I especially love Singing Time as I was inactive as a child and missed it all.

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I don’t want to be known as the girl woman who’s “So good with kids”.  I wanted my own children!  

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I found myself talking with some kids this morning as we were singing songs and I was overcome.  Tears began to flow.  (I’ve written and then deleted the same line for 5 minutes here.  I don’t know what to say next!) – I’m feeling so sad and dejected and hopeless this morning.   I wanted to be a mother more than anything.  I know that even if I didn’t have Cowden Syndrome I still may not have had children, but still. Being around children is not the same as having a child. Your own child.

It’s not the same.  It’s not the same.  It’s not the same.  It’s not the same.  It’s not the same.  It’s not the same.  It’s not the same.  It’s not the same.

To any parent who is frustrated with their children at any moment of any day: Always remember how blessed you are to have a child.  Never forget that.  Please.