To be honest, I hope that my blog will help to educate (to anyone who will listen) about Cowden Syndrome and Lhermitte-duclos Disease. Have you ever heard of Rare Diseases?
I began this blog Day 1, or rather Day 2; the day after I was diagnosed with a 5 cm. brain tumor in my cerebellum. 6 years later and I still don’t have the foggiest idea what I am doing. 🙂
But, I’m trying. Thank you for hanging on with me!
PS: Please check out my Teespring storefront while you’re here!
A few days ago an acquaintance of mine asked me, “Now, can you really not work or do you just not want to?”
You know, when someone starts off like that with me, it’s really a lose-lose conversation.
As I said, she’s just an acquaintance. She doesn’t know the daily ins and outs I deal with. In fact, no one really does (she doesn’t know me well enough to ask, but had she asked, I would have told her.) She droned on about, “People who get disability get worse” and blah blah blahhhhhh. To be honest, I had already tuned her out.
But, do you see where I am going with this?
Think about this for a moment:
- I don’t enjoy being destitute
- Do you think I love worrying about bankruptcy every moment of my day?
- Do you think it’s fun not having money to buy my basic needs (clothing, toiletries, etc.)?
- Do you really think I am home eating bon-bons watching daytime TV?
- Just because I can walk doesn’t mean I am not dizzy, in pain, managing a migraine, trying to concentrate and focus on what you’re saying to me, etc.
- My life isn’t fun. It’s damn hard
I can’t do what I once did. I am applying for jobs. I am looking. But, maintaining a full-time job (as I did before diagnosis and surgeries) isn’t possible. And, evidently, even finding part-time employment isn’t happening for me. Also, I can’t trust or disclose in an interview, “Oh BTW, I have 2 brain tumors and damage now and get dizzy often and need frequent breaks to sit or stand and have to drink a zillion ounces of water now because since surgery I am more dehydrated than ever and sometimes I get migraines too..and…and…and…”
What the hell am I to do?
Part of me feels like I inhabit only doctor offices and hospital rooms. Because Rare Disease. (A virtual contact of mine said today, “It kind of feels like you’re going to the mechanic.”)
In actuality though I have my room; my own private escape from all things medical. What can I do to make it more mine: I have dark curtains and a few stuffed animals and books. Always books. But that’s it. I want to make it more homey, inviting, etc.
PS – Please check out my Teespring storefront while you are here. Thank you! ❤
What else would you recommend for me? EDIT: This photo is from the Internet. Not my room but I love this! 😉
A quick search states that solitary means: existing alone, unaccompanied, alone, friendless.
And it’s funny that I find myself alone as I am writing this post. Alone, except for my cats. I am a very proud Cat Mom. ❤
At this point in my life, or rather my CS life, I am unaccompanied at my medical appointments. But you know what? Just because I go to them alone doesn’t mean they are any easier to manage or bear alone.
I have just read a few posts on this prompt and much of what I read talked about being an introvert or extrovert and how to manage your life as such. I don’t know what I would call myself actually, but I guess my point is I wish I wasn’t in this medical world alone. It gets very lonely and overwhelming sometimes.
Medical world, Rare Disease world, Brain Tumor world, all of it. I can seem strong sometimes, because strong is the only choice I have.
Sometimes, it’s fun to look back at from where I came. My real medical life began in 2003 when I got diagnosed with thyroid cancer. I hadn’t really been all that sick prior to that. Little things here and there, had my tonsils removed when I was 19, that’s about it.
Obviously I can connect the dots now and see how most everything from birth-2003 and then 2003-2011 screamed Cowden Syndrome, but whatev. Did you know that thyroid cancer is one of the “signs” (my words) of Cowden Syndrome?!
I saw the endocrinologist this week. With all the ones I’ve been through, not including one specific one who was my doctor for EIGHT YEARS, this current one is pretty good. I’ve had better (see previous sentence) and I have seen much worse.
People can’t seem to leave my TSH alone. It’s either too high; too low; too whatever and we have to worry about blah blah blah. I just KNOW how I feel when my TSH is a certain number. Can’t you all leave me alone? (NOTE: Mild sarcasm. I get it.)
I saw Dr. Endo this week. He loves my TSH at 1. something. I hate it.
I love my TSH around .10 or .20. But, he doesn’t.
Anyway, more blood work. Checking of my T3 or T4 or something. I don’t know. Then, I see Dr. Oncologist in the next weeks to check The Ladies.
What’s new with you? 🙂
So, this post is just to get all this crap out of my head so that hopefully I can sleep tonight.
Welp. I don’t sleep any other night, so why would tonight be any different?
LET ME BREAK THIS DOWN:
- I have 2 rare brain tumors
- I have a hereditary cancer syndrome called Cowden Syndrome
- I had 2 brain surgeries and am currently experiencing issues/effects from having my brain scrambled a few times
- Blah blah blah – I see a zillion doctors
- I apply for disability 3 1/2 years ago
- I GET DENIED for disability
- I can’t work, I can’t understand and process things as quickly as I used to, etc. etc. etc.
- Just a few weeks ago I found out about a job that’s in my field, PART-TIME, matches my degree area, pays INCREDIBLY, literally perfect on paper so I scrambled (ha!) and applied. I am very qualified for the job
- FOUND OUT TONIGHT THAT I didn’t even get called for a damn interview for the position
- ALSO, DO YOU KNOW THAT I CANNOT EVEN GET AN INTERVIEW FOR TARGET?!
- What does God want from me?
- One needs money in order to survive in this world!
- Filing bankruptcy has been one of my worst fears since diagnosis and I have been able to avoid it. Until now
- I can’t work. But, then when I find something that would be a STRUGGLE but do-able, I don’t even get a call to interview for it
- I am a good person! I have a degree!
- What the hell is wrong with me and what I am I supposed to do now? Sell my body on a street corner to make ends meet?
This is a funny prompt, only because due to my deep depression I have struggled a lot with brushing my teeth. TMI? Sorry. Realtalk? – You bet.
A few years ago I finally made the move to an electric toothbrush and I haven’t looked back since.
AND, while I could go on and on about mouth problems and CS (but I won’t), I will say that I pretty much fault every dental hygenist I’ve ever met in my entire life.
I only found out LAST year there’s so much more to flossing! GAH, I am embarrassed to admit that, but it’s true. I thought flossing’s
main purpose was to remove any food that had lodged between my teeth. I never knew it was to scrape off all the junk and buildup!
Such is my life: Brain tumors, rare diseases, and learning how to floss properly at 44! 🙂
At times, I wish I could sail off into the sunset. To leave all my cares and worries behind me: no more brain scans; no more breast scans; no more kidney scans; no more colonoscopies and EGD’s; no more stress of worrying about the outcomes of the tests I must endure. No more Cowden Syndrome and no more Lhermitte-duclos Disease discussion. Ever.
Alas, life is not like a movie. I don’t have that luxury around me, and to be honest, I really envy those that do.
But life is life. And, it’s not a dress rehearsal. This is my lot in life. Call it bad or good, it’s mine and I must not ever give up.
The last few Daily Prompts have intrigued me and I have begun several blog posts. But, each of them seem to be revolving around my medical status and remain in my drafts folder. I know there’s something else to me besides medical everything. Right?
So, in the spirit of acceptance I will dash to my next appointment and be back soon! Happy 4th of July everyone. ❤
…another person telling me the following:
“Wow. You got denied disability? I know tons of people with less than you who got approved.”
“In order to get approved you pretty much have to have a condition that will end in death.”
(It’s freaking 2 brain tumors. How much more “ending in death” can you get?)
“Are you working?”
“Are you married?”
“Why aren’t you married?”
Please. For the love. Just stop.