Cowden's Syndrome, Health, Lhermitte-duclos Disease

Mumbo Jumbo

Life is happening very quickly.

Usually this overwhelms me to no end.

Tonight I find I need to write a bit and then get to bed earli(er) than usual.

I have had a bunch of appointments these last 2 months and I find myself struggling greatly to keep it all straight. Between labs with my endocrinologist and a “spot” in my thyroid bed that we STILL don’t have a definitive answer on what it is…to reviewing my EEG with neurologist and MRI with my neurosurgeon. I told my mom last week that it’s really good I didn’t suffer (more) brain/cognitive issues post brain surgeries because SHE would have to be the one managing all these appointments and scans and results!

It’s a whole lot.

Sometimes I just need to get on here and just say that.

Cowden Syndrome is a lot.

Lhermitte-duclos is a whole effing of a lot.

I know there’s no handbook or manual to manage Chronic Illnesses but imagine how much simpler life would be if there were one!

What would you include in your book? I think I would be sure to include watching a WHOLE lot of 90 Day Fiance! (I’m kinda obsessed, tbh). 🙂

Cowden's Syndrome, Health, Lhermitte-duclos Disease

Life = change = life

Ugh.  I saw my new primary doctor yesterday.  Such a surreal experience.  Of course I know that my original doctors (since diagnosis) can’t be with me forever but waaahhh.  I miss my olddddd doctor.  She knew me.  It was easy.  And, to be honest, in stating my history for this doctor I didn’t quite realize how much of a hot mess I actually am.  🙂 I am a lot.

Currently, I don’t have an oncologist which really sucks balls.  My previous oncologist took the burden from my shoulders and was responsible for managing all of my procedures: mainly coordinating my colonoscopies, kidney scans, etc.  But since I have different insurance now (which also sucks eggs terribly, but that’s for another post) the “powers-that-be” will not authorize an oncologist because “I do not have cancer”.  Welp, hey folks let me tell you something:  I’m not trying to get cancer so can you get on board to help me CATCH it before it strikes?!

Waiting to hear about my EEG from a few weeks ago.  Just followed up with the Neuro so we’ll see.  I have learned that not hearing from the doctor, or the whole “no news is good news thing” doesn’t apply all the time with Cowden Syndrome and Lhermitte-duclos Disease.

I know things take time.  Blah blah. I get it.

It’s just a lot.  It’s a whole dang lot and I’m not sure how I’m doing it.

How are you, though?  Read any good books lately?  🙂  I’d love some recommendations.

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PS. Don’t forget to follow me on Instagram!

Health, Lhermitte-duclos Disease

Hope

I just finished my EEG and had one of the most spectacular technicians ever! She was awesome. Period. She is 100000000% in the right career field. She gave me hope that not all medical people suck!

While the test was rough (the flashing lights part was no good) she made it “less rough” (90’s R & B can make anything a whole lot better!) PLUS she listened to me.

Thank you Ms. P!

Health, Lhermitte-duclos Disease

I fell down or happy 1000th post

A few days ago I blacked out and hit my head on a wall in my house. Scared the bloody hell out of my mom; I’m still kinda in shock about what happened and I try not to think about it. I took an ambulance ride and had a bunch of tests in the ER including a CT scan on my head and a chest X-ray.
I was told by the doctor that everything came back “OK” and there didn’t seem to be any huge issues in my head. So, that’s great news.

Interestingly enough I had an appointment already thankfully scheduled with my neurologist yesterday. He wants to do an EEG and I have my next brain scan, #scanxiety, in December and he was fine with waiting that long to get a scan.  

I’m terrified it’s going to happen again at any moment.

Cowden's Syndrome, Health, Lhermitte-duclos Disease

On Looking At My Calendar For Next Week

This week I have 3 medical appointments, or 3 “heavy” appointments as I refer to them.  I looked at my planner and realized this upcoming week is one I have dreaded for a while.

I have appointments with:  my neurosurgeon to check the neck CT angiogram; my neurologist to check the abnormal EEG; and my endocrinologist (who, among other things, needs to check my Vitamin D levels and quit messing with them.  Personally, I want my Vitamin D level to be as high as possible!)  This is life with Cowden’s Syndrome.  There are so many emotions tied with the neuro appointments.  Fear, loss, weakness, etc.  The endocrinologist appointment doesn’t evoke so many raw emotions from me,  just more exhaustion than anything else.  This thyroid, endocrine nightmare is never-ending and seems to always be changing!

I will write about this; however, I realized how many others things I need to write about.  Not to complain, just to document living my life with 2 rare diseases:

  1. Meeting my new-friend-who-is-living-with-Cowden-Syndrome-also-that-lives-relatively-close-to-me for lunch a few months ago and going to the wrong Thai restaurant  🙂
  2. The day of the first CT angiogram and EEG appointments (They were back to back.  Not fun.)
  3. The appointments I had the last month with both neuro docs.  How I felt doing the neuro tests in the exam room; deep, heavy, emotions from the core of my being
  4. Received a compliment from a colleague about how I am “meant to be a teacher”
  5. Almost religiously that I watch “Big Bang Theory” before I go to bed
  6. I sleep with an Ellen eye mask
  7. At lunch today with my nephews and mom we each got a straw that had our favorite color (yellow, blue, and green)
  8. The huge privacy breach I witnessed at one of my doctor appointments last week.  THIS ONE FOR SURE will be written about!

So, life is what happens when I am trying to keep up an active blog.  The above things are very important to me and they need to be written.  The “heavy” things need to be written so that I can leave them here and then go on about my life.   Writing is therapy and there is a reason why I still write.  I may not know that reason for many, many years, but I do know my voice has meaning.   Thank you to all of you who are with me.