There are several moments I wish I could recreate: my high school graduation; graduating from college; the day before my Dad passed away; a trip to California Adventure the beginning of July 2011 where I watched World of Color, and those are just to name a few.
I can absolutely 100% state that there is one moment I wish I never experienced, nor ever wish to experience again.
A few months before I was diagnosed with the brain tumors, my left eye was twitching constantly. The top and bottom eyelids wouldn’t stop twitching! It was so annoying. I went to a few natural doctors around that time (not for the eyelid specifically) who did different types of testing, including muscle testing. The doctor said I had an intolerance/allergy (I cannot remember the exact term he used) of American cheese, wheat, and something else that I can’t remember either (hello brain tumors and menopause. I can’t remember crap anymore!)
It’s interesting to note that at that time (6+ years ago) I had been
loving er, I mean living on triscuits and cheese. I think that’s only incidental but hey! You never know. hehe
I don’t remember either if the supplements he started me on did anything to help my eye. I do remember though getting diagnosed with a 5 cm. brain tumor 5 months later (cough! cough!)
So, my point is: I don’t think my left eye has twitched once since this whole Rare Disease stuff began.
Guess what started twitching 3 days ago? And, coincidentally I skipped my brain scan this mid-year. (I am ready to do the MRI’s yearly now.)
But that’s really here nor there.
*ALSO: I have made a few more changes to my Teespring storefront: Please take a look!
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!
What other choice did I have? I couldn’t lay down and give up. I had to continue forward. But, when people told me, “Oh Heather, you’re so strong. I couldn’t do what you’re doing.” – I wanted to knock their block off!
It’s recovering from freaking brain surgery people! You do what you have to do in order to not die. You would have done the same damn “thing”.
PS: Don’t forget to check out my Teespring storefront!
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! 😉
I mean, it really does. But, so does menopause, brain tumors, anxiety, hypothyroidism, loneliness, and a host of other things. I feel like when I have days like this (read: days that suck) I need to blame something: (see my list of things above). I don’t know why.
I guess because I hope I’m not just lazy. I hope that as these bad days come more often I will be able to not let them suck the life out of me and get me down even more.
Today, for example: I didn’t go to church. I went on an “adventure” yesterday (my words) and I think I overdid it. I just couldn’t clear the brain fog this morning. I woke up and felt like I was in a trance. So, I slept/napped a bit more. Did some reading. Caught up on one of my favorite shows, and while it’s still mid afternoon I have 2 choices. (Actually, I probably have many more but these are my main 2.) I can take another nap, rest my brain, or get up and clean my room and catch up on my mail and laundry that’s piled up.
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.