So today I did some good stuff:
So today I did some good stuff:
I’ve heard it said that Cowden Syndrome is “lumps and bumps”. I don’t know who said that or where I read it, but it’s kind of stuck with me ever since I heard that phrase.
Recently added to my medical team is an ENT, whom I saw just a few weeks ago for some mouth issues. I get these skin tag type things, and had the doctor remove some of them…snippity snip.
Just this morning a new “thing” is in my mouth. It’s very hard, painful, and is shaped almost like a water blister. To say I am not moderately concerned would be a big fat lie. I am very worried. This is new.
I’m for sure not going to search “water blister bump in mouth” because I know it won’t end well. I messaged my doctor. I took a few pictures of it. I now must take care of business while I wait.
I must continue to remind myself that I am not complaining about my lot in life. I am processing it as best I can. That’s an entirely different story!
Last week I had to go to the ENT about my mouth. Ugh and ugh. I won’t go into details but the very next day I was hating life. Big time.
But my mouth heals and I still put one foot in front of the other. What other choice do I have? Also, July is a sobering month for me: I was diagnosed with Lhermitte-duclos Disease and had brain surgery 9 days later. It helps to write about it.
And of course, I get that. But, I don’t view my blog posts as complaining; I’m documenting.
My biggest fear is dying alone and I suppose that this blog helps me feel
safe secure that my life has some value and since everything is forever on the Internet, haha, I won’t be forgotten.
Being single and alone, no children too, is weighing on me heavily as of late.
My brain surgery/tumors are causing me more grief, too.
I have run into walls more frequently, about fallen over several times, and since it’s summer that means it’s time for daily headaches. Oh, joy. 😦
So, writing here about my life’s struggles helps me to feel validated. I know I am not alone in my brain tumor life (or my Cowden Syndrome life for that matter.)
It is what it is.
I’m scared and anxious today.
Thank you for being here.
But as I looked at it and read a few blogs, nothing is jiving for me. I could write a short post on the time I met Mr. T, or Sylvester Stallone, or Loretta Lynn and Mickey Gilly, or Brad Garrett. But meh.
What I will write about this morning is how much anxiety sucks. I mean, really and truly sucks.
For those of you who suffer with anxiety what are some quick life hacks you turn to for help? Please share in the comments. Thank you.
Something is coming up for me lately. And, I don’t like it.
This morning I went to volunteer at an event. I committed to this several months ago and knew (prepared mentally) for it ahead of time.
I realized about 3 hours in that I was “done”. My brain, my body, my entire existence was finished. I needed to leave and get home immediately. These episodes are happening more often. My side effects of brain tumor/surgeries (shaking, losing my balance, almost running into things) are increasing and it’s making my anxiety worse.
But, why, for the love of all that’s good and holy, do I feel this need to overshare? I must have said it several times in the last 48 hours, “I have a medical condition…” and then explain my feelings or my dang life to them. NO ONE CARES HEATHER!
MY BRAIN TUMORS are really no ones business and it’s my decision (obvi) to tell whom and when. Normally I have no filter when it comes to my brain stuff, but it hit me quite poignantly as I left the event:
WHY do I feel the need to overshare?
WHY do I feel I need to explain why I am tired?
WHY do I even think anyone gives a flying crap why I am doing anything?
WHY am I only realizing this now?
WHY is my ego so involved in this?
“I need to leave.” is a complete sentence. Period.
I suppose I feel judged. I suppose I feel less-than. I suppose I still haven’t fully accepted these brain tumors/effects and I feel like something is wrong with me (well, it is. But you know what I mean…)
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?
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. 😦
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 ❤
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.