I have a vague recollection of wanting to write something brain tumor-ish these last few days. Of how I feel so silly most of the time because I nod along with people as if I have a clue what they are talking about. When in reality, I have no idea. When will I be found out? When will others know I am full of crap? When I get clarity on a situation when I had no idea I didn’t understand it from the start: FRUSTRATION times infinity.
Sometimes, I feel like Joey in that Friends episode with the encyclopedias.
At some point in my life I believe I carried a song in my heart.
It’s not there anymore. 😦
My diagnosis of Lhermitte-duclos Disease and then Cowden Syndrome disrupted my life so completely that even 7 years later I am still reeling. Trying to find my balance and inner strength.
I am so very thankful to have gotten through these last few months relatively unscathed. 🙂 The EGD and colonoscopy was rough, but completed. And then breast MRI was “easier” than I remembered! The only negative thing I immediately noticed is my shoulders were very sore (you lay on your stomach with your arms stretched overhead). Awkward doesn’t even begin to cover it.
Also, I haven’t received a telephone call from my oncologist. I breathe a huge sigh of relief from that as I know from experience I would have gotten an immediate call had there been an issue or concern.
Today I have errands to run, appointments to complete, and blood to be drawn from my arm. I best get going and I hope you all have a great day today!
Since my diagnosis in 2011 of Cowden Syndrome and Lhermitte-duclos Disease, I seem to have fine-tuned my toxic meter for people in my life.
Either people who were in my life and no longer are, or those in my life that I literally run from.
I know what to do now.
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.
I don’t want to be known as the
girl woman who’s “So good with kids”. I wanted my own children!
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.
Hi everyone: I made it through the colonoscopy and EGD! It was a rough time; I’ll be very honest. So glad it’s over and now can move on to the next appointment on my calendar.
The GI doctor (whom I love!) biopsied 4 polyps in my colon and told my mom that my esophagus looked even BETTER than before! You may recall that my esophagus is “carpeted” with polyps and a few years ago I was referred to a specialist as there was talk about an esophagectomy at some point. You can read about that fun time here.
I’ll take this news as a small win and will be in touch soon. ❤
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?