I just hit the 11 year anniversary of getting diagnosed with Lhermitte-duclos Disease, which then led to the diagnosis of Cowden Syndrome. How can that even be? It came and went, July 18. I was aware though. I can’t imagine there will ever be a time in my life where I am *not aware of the month of July. Day after tomorrow is the anniversary of getting my head cut open for the first time, July 27. I’m stunned. Just stunned. That is some heavy information, you know. Thank you for being here with me. If you’ve been with me from the start or found the blog after, I am so glad you’re here! It means so very much.
craniotomy
Stop it
I thankfully just avoided a panic attack. I’ve been through this for so many years but the anxiety just doesn’t stop.
At times my head (skull) itches. I’m sure the nerves healed after both brain surgeries in a weird way which causes the odd itchy places.
I was rubbing my usual itchy spots (right near the incision) just now and I swear I heard (felt) a type of crunchy sound. That’s new. That’s weird. Then it hit me. Hard.
I’m grateful I was home with my mom. I started the 5,4,3 thing (which I don’t know if I did it correctly) but it helped ease me down.
Nine years after brain surgeries and I’m still no better at accepting and coping with Lhermitte-duclos Disease.
Unexpected
I ran into an old colleague. It was unexpected but really nice to chat with her for a few moments.
Eight years ago, when I was literally being wheeled to my first craniotomy (head bandaged and wrapped and all) – we passed each other in the hospital. I in my wheelchair, she was standing near a Nurses Station. I assume she was there visiting someone, family, etc. I can still see and feel in my body RIGHT AT THIS MOMENT my emotions at that exact moment – so many years ago.
It’s so odd to me, albeit even overwhelming, that I still have such intense reactions to things that trigger me to that time in my life.
That time of my life was a living hell.
I wonder if my vivid memories – and the reactions they trigger in me – will ever subside?
Past Present Future
Daily Prompt [Complication]
I could write about the complications of my brain surgery, or hysterectomy. Or…any other thing in my life.
But I don’t want to focus on that this morning.
I just want peace.
I want my life to have meaning and I sure wish society didn’t place so much pressure expectations value everything that matters on women being mothers. What about those of us who can’t or aren’t able to have a child?
Lately, all I am seeing lately are “Mama” things, or “Mamacita”, “Wifey” or “Boss Mom” blah blah blah. Do you know what I would give to be able to wear something like that?
It hurts.
Rather, my heart hurts today.
I just noticed a similarity between this (Single/Women who aren’t mothers) and the adult population of the Rare Disease Community. I see so much about children with Rare Diseases, I wish people would realize know understand that there are adults who are diagnosed with them, too.
We are a forgotten bunch. 😦
Daily Prompt [Sleeve] – AND THE EVER-LOVING SYSTEM IS BROKEN!
Hello. My name is Heather and I would like to welcome you to my blog. Today’s post is full of anger and bitterness; thank you for joining me! 🙂
I have no connection to the daily prompt except that sleeve reminds me of peeved. Pissed. Angry. Furious. Frustrated. MAD. Irate. And, we will continue from here:
I have 2 brain tumors and a Rare Disease called Cowden Syndrome, which you may or may not know. What concerns me more than CS is the brain tumors I have, called Lhermitte-duclos Disease, or Gangliocytoma. I’ve already had 2 crainiotomies and am currently experiencing more symptoms that are annoying and down right scary. A few years ago I applied for disability, appealed, had an “advocate” (and I use this term loosely because I got snowed and he is a terrible excuse of a man) and after almost 4 years of the entire process the Judge finally denied me. Period. End of story. Do not pass go and do not collect 200 dollars. In part, he denied me because I was “calm and collected” in his courtroom and after my hysterectomy in 2013 I told a doctor on my team “I wanted to go back to work.” Ugh, thinking about this again makes me nauseous and I want to spit fire.
Since the outcome, and well actually since I started to feel any semblance of a normal life (probably around 2012) I have worked my ass off trying to find a job(s) so that I can survive. Do you know how expensive it is to LIVE though? If you have a job, be grateful. If you have money, be grateful. Be grateful for what you have.
Anyway, a few months ago I found another part-time job that is flexible and they understand my health issues, the brain tumors, the good days and bad days, the daily headaches, etc. I am very lucky to have found this job. And, guess what? I made “too much money” in April and May and will lose my state medical coverage the end of this month. WHAT IS WRONG WITH THIS PICTURE?!
And as I was running errands earlier today I ran across the booths offering FREE CELL PHONES TO ANYONE (who qualifies, whatever). WHAT ABOUT ME? WHY do I fall through the cracks? I will not debate immigration concerns, illegal or legal, because that’s not my job nor is that my concern today. MY CONCERN IS ME. MY LIFE. MY FUTURE. I AM AN AMERICAN CITIZEN AND GETTING DIAGNOSED WITH 2 BRAIN TUMORS HAS DESTROYED MY LIFE. WHY AREN’T I AS IMPORTANT AS OTHER PEOPLE?????????????????????????????????????????????????????????????????????????????????????
May is brain tumor awareness month. Brain tumors are evil bastards that ruin lives. Mine, included. Please visit these links to find ways you can help. Thank you ❤
American Brain Tumor Association
Daily Prompt [Courage]
During my recovery from the brain surgeries someone told me, “Oh Heather. You’re so brave. I couldn’t do what you’re doing.”
Ugh, that comment still makes my blood boil, even years later. I get that she was trying to be supportive or caring, but believe me that isn’t the way to go about it.
I am not brave. I am not courageous. I wasn’t climbing a mountain or swimming with sharks for Pete’s sake.
I was trying to not die.
Where, how, why, what’s the point?
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?
Daily Prompt [Miraculous]
While I get caught in some deep depression most days, I know there are many miracles in my life. I could dedicate an entire blog to them. However, not today. I want to focus on my healing since my brain surgeries. I know it is nothing short of miraculous that I am alive today and able to walk.
On Nerds and Lifesavers
“I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. “
When you suffer from chronic headaches, it can be a blessing and a curse at the same time. A blessing because you have to learn how to slow down and take time for you. A curse because the pain of the headaches can (and usually does) interfere with your life’s plans.
And by “you”, I mean “me”.
As many of you know, I have had chronic and severe headaches since my brain surgeries in 2011. I assume the migraines are worse and more frequent as a result of the surgeries. But, I also suffered from migraines before my diagnosis. I was horribly sensitive to light, sounds, scents, etc. And still am. I am a very seasoned headache sufferer and have been around the block dealing with them. A migrainuer, if you will. 🙂 I am dealing with, adapting to, and accepting the pain of my migraine headaches. It’s very tough most days, but I try to power through. However…
…luckily for me, along came Axon Optics.
I wasn’t sure what to expect as I’d never been able to buy specific “Migraine” glasses before. I’ve always had to use the darkest sunglasses available to me. While I would recommend these glasses for certain potential migraine situations, they weren’t a cure-all for me.
I had very high hopes I would be able to use these glasses outside, in the sun, while watching sports or walking. Unfortunately, the migraine glasses did not work for me in these circumstances. The lenses were not dark enough for me and it was quite uncomfortable to wear them outside. I had no choice but go back to my regular dark sunglasses for outdoor activities. Another negative thing I found is that when I wore them inside and had to look far away at something, it made me a little dizzy and the thing(s) I was looking at were blurry. This happened once while I was in the grocery store looking across the aisles. I knew immediately not to do that again.
BUT, I did notice a huge benefit of these Axon Optic glasses on more than one occasion. I was at dinner with my mom and noticed I was beginning to get a migraine. I usually have my “go-to” things I do to try to stop the pain, but since we were at dinner I was a bit stuck. I put on my glasses and after a bit of time I noticed my migraine was significantly less painful.
When I am at church the room lights normally bother me. When I wore the glasses I noticed a huge relief of eye strain and I was immediately at ease. This is a big deal! I teach often and there have been many times over the years I’ve had to teach through a migraine. These glasses have been a lifesaver to me.
There are several styles to choose from, and I chose the Jura frame because I thought it looked the most like the “Nerdy” glasses that seem to be popular lately. I was a bit concerned that they wouldn’t fit me properly, as there weren’t any measurements required or tips on which to lenses to choose (this was true at the time I ordered. Their website has options now of frame colors and different lenses.) All in all I really like them and think they look “OK” on me. The glasses are very well-made, and don’t feel cheap or flimsy. Included with my glasses was a hard-shell black case with “Axon optics” written on the front.
The bottom line is that I would recommend these glasses to anyone who suffers from migraine headaches. You might need to see how they best work for you, and in what circumstances. I didn’t stop getting migraine headaches, but I noticed Axon Optics migraine glasses did work in some cases to reduce my pain. That’s a win in my book!
hopeforheather 