Any tendencies I had to blush while hopping into my hospital gown are now gone. I will strip naked in front of any nurse or doctor any day of the week. That’s just what Cowden Syndrome and Lhermitte-duclos Disease have given me! Shall I be grateful? Not really. But since I’m kind of a professional patient now there’s no need for me hesitate. I will jump right in to get the business done. No time to waste!
Oh, and by the way, speaking of waste, tomorrow morning I have my next colonoscopy. I don’t like that I am high-risk colon cancer, and in fact I don’t like that I am high-risk any cancer. It’s just what is today. This is almost hour five of me trying to get the prep down. It’s rough. And I mean r o u g h.
Please send me good MOJO in the morning! I really appreciate it.
Hi guys. Do I have anyone here that is on Twitter? I am really
interested motivated passionate hopeful about putting together a tweet chat for those of us connected to Rare Diseases. I know there is already the hashtag #RareDisease, but for brevity’s sake I registered (hopefully correctly) #rdsm – Rare Disease Social Media, modeled after #bcsm and #btsm.
Please let me know if you would like to take part! Thanks!
There are about 18 different directions I could take this prompt. However, since this is a Rare Disease Awareness and Advocacy blog, why don’t I write about how my life suddenly changed on July 18, 2011?
If we go back to the beginning, see this post about what led me here. (Boy, I just took a few minutes and re-read those posts from the
early dark days. My anxiety is full-bore right now…I am so thankful that time of my life is over.)
Sometimes I wish I only had the brain tumors, and not Cowden Syndrome also. It seems like my energy could be put to better use if I was focusing on healing and recovering from just one condition, not two. HAHA.
Yet, life doesn’t roll like that for me. I do have this thing called Cowden Syndrome and sometimes it’s a beast to carry. This month I have a lot of medical procedures and I am already nervous about them. I have tried to focus my energy on other things (reading, volunteering, etc.) but I know I will be slapped upside the head come next week. I feel this need at times to “be prepared” but some days I want to put my head in the sand and not come back to reality for like 2 months.
Next week I have the colonoscopy and EGD scheduled; really really really really not looking forward to that again. I tell the doctors every time that I need to be sedated before going in. Not one doctor has listened to me and I have such huge PTSD for anything related to surgery/procedures that I have a full blown anxiety attack right before I go under. And that sucks eggs. Bad. I pray this time is different because I met the doctor at my pre-op who will be the one doing the procedure, and I begged him for something before going in. He got it! Please keep your fingers crossed that it will be smooth sailing. 🙂
I am not even going to discuss the EGD right now. Denial is a wondrous thing at times.
The last week of March I have the breast MRI. I don’t want to write about that either as I want to enjoy a bit longer my trip on the River Denial.
My hope is that if I can reach just one person who might say to themselves, “What’s a Rare Disease? What’s Cowden Syndrome? What’s Lhermitte-duclos Disease?” then all I’ve endured so far will be worth it. I wish someone (friend or medical personnel) would have told me in 2011 that I am not alone, and that I will be OK.
How appropriate today’s daily prompt is! As I am pondering this early Saturday morning a few things keep going over in my mind:
Life is messy. It just is.
What matters is what do you do with it, right? I know I say that often, but I want to keep reminding myself that although my (medical) life is out of control, and that directly affects all other areas of my life, I am still here! I can and should still exert control (my choices, rather) on what I do and do not want to do with my life. My bedroom is a hot mess. My closet is a hot mess. My hair is a hot mess. My car is a hot mess. I guess I just have embraced the messy because I feel that’s a representation of my life. (!!!!!!!!)
Gosh, who knew that blogging could be such great therapy, LOL. That’s exactly it. I’ve been absorbed into the mess that is my life and cannot find a way out of it.
YET, I do have a choice!
Even if it’s as simple as reading a good book. Or listening to music I enjoy. Or cleaning out the trunk of my car.
Cowden Syndrome and Lhermitte-duclos Disease robbed me of the life I hoped and dreamed to have: Mother, wife, blah blah blah. When you have no dreams or hopes and feel your life is a mess…ew that’s just too much for any one person to handle.
I am reminded I only have to “handle” today. I will finish this blog post and and start on my laundry. Then, I will make sure I make time to pick up this book that I have been trying to finish for years!
Thank you for being here! ❤
What are you doing today?
Today was rough. It was a very, very, very long day. I am so glad to be home. I guarantee that tonight will be PJs and in bed by 7 PM. For realzzz.
However, some good things happened today also. I think I’ve mentioned that Rare Disease Day is next week, 2/28/18. I had some custom bookmarks made with my blog information and was able to give them to several people today. I am very blessed to know some very good people and they (happily – I hope!) accepted the bookmark as I gave them a quick spiel about next Wednesday. I feel that any time I can have a conversation with anyone about Cowden Syndrome or Rare Diseases in general, it’s a great thing!
(I usually don’t even mention Lhermitte-duclos Disease because it’s a mouthful to say!) 🙂
No one should live in constant fear of a brain tumor growing or one day getting diagnosed with cancer.
No one should. Ever.
However, I do.
My task is now managing fear of the unknown while trying to enjoy the life I’ve been given.
He has been on my mind today.
Did I ever tell you that before my dad went on his mission he was interviewed by President Hinckley?!
There’s a quote that always reminds me of him – “Forget yourself and go to work.”
Here’s the back story of that quote if you’d like to read it. 🙂
So, that’s what I did today! I (tried) to forget myself and went to work.
Yesterday I had the consult with the GI doctor regarding my next colonoscopy and EGD. I’m not looking forward to it to be completely honest. I also got a call from the pharmacy yesterday that my insurance doesn’t cover the prep and my co-pay is $100.
Yah, that’s not happening.
I made some calls this morning about another option for the prep and then spent all morning searching online. Searching for “work from home” jobs (legit ones, obvi) and any other “side hustle” jobs out in the world. (Could I drive for Uber Eats? Or Go Puff?)
Suuuuuuure I could. If there were any available.
My point being this: I had a very rough day yesterday, ending with the doctor appointment which always brings up my PTSD, etc. I slept relatively well last night and got up today and tried to be productive.
Granted, nothing developed from my searching. But at least Heavenly Father saw that today I was trying. I really tried hard. And, even felt “good” to boot. 🙂 so here’s to another good day tomorrow! 🙏🏻
As I have written many times before, this blog is my safe space, literally, to get pissed about what is going on in my life now, usually my struggles and heartaches as I work to process brain tumors and Rare Disease. I will always be honest here and to myself. I owe myself at least that much. It’s not pretty most days; thank you to those who are with me on this!
But, changing gears just a bit, I am really excited for this year’s Rare Disease Day.
Each year since my diagnosis I’ve hoped and always wanted to plan something “big”. A few years ago I was able to hold a fundraiser and the money raised was donated to Global Genes and the PTEN Foundation.
That event was so incredible and I was able to have Jaana, my awesomely talented friend take photos of the event. It was such a great time!
Unfortunately, this year I wasn’t able to plan anything.
BUT, I do have something else going on to bring awareness for Cowden Syndrome and Lhermitte-duclos Disease and I can’t wait to show it to you all!
I know we’re encouraged to have faith during our trials.
But, how do I get some?
I’m constantly nauseous because the realization is hitting me harder and deeper: I cannot afford to live.
Why would Heavenly Father bring me through 2 brain surgeries, and a host of other surgeries, for this?
I feel terribly guilty. I feel like and AM such a burden. No one understands the inner turmoil this brings me.
This is all my life is?