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?
I probably shouldn’t ask questions of my Mom about the brain tumors.
I’m all worked up now; I don’t think the Trazodone will work tonight, dammit.
We were just talking about wisdom teeth and how I’m the only person I know who didn’t get ANY! 😝
(My Mom got 1 and she doesn’t remember about my Dad) and I said jokingly, “Maybe mine were in part of the brain tumor Dr. K got out”…..
Then it went off the rails (for me) right after this. Dr. K told my Mom in 2011 the smaller, encapsulated tumor is circular in shape.
And the 2nd tumor, the big one that is kicking my ass, AND WAS THE REASON I HAD TWO BRAIN SURGERIES 1 WEEK APART – has “fingers”. No border, I guess, right? 😳🤕
And those damn fingers are going to grow and get deeper in my cerebellum. And continue to wreak havoc in my daily life.
I know we ALL struggle and have trials/tribulations – but how am I ever supposed to triumph over this? Can I? Will I? How?! I had such hopes and dreams for my life and future. 💔
This freaking sucks; it sucks balls that I have to deal with this all by myself, I’m just saying. I’m almost 50 years old and I wish I could catch a break.
I hope(d) and pray(ed) that the Lord would bless me with a partner/companion/trusted friend who’d want to help me carry this load. Guess I’m crap out of luck. I’m tired. I’m tired of all this brain stuff. I’m tired of being alone – what friends I had – are gone. Do brain tumors scare people that much? Then IMAGINE what it’s like living with 2 of them? 😐
I hate you Gangliocytoma.
Do you know that this month is Brain Tumor Awareness Month?
Do you have your gear yet? (hint hint!)
If you follow me on Instagram you’ll know I promoted a post to (hopefully) get some traffic and potential
customers friends who would help me in my advocacy this month. If you’re new here, I am living with 2 rare brain tumors in my cerebellum called Gangliocytoma.
Take a look at this link and if you feel so inclined (please!) to purchase a shirt I will be donating 20% of the proceeds to the National Brain Tumor Society. I initially created these shirts to advocate but also to help me with my daily living expenses.
I have tried to get my creative juices flowing lately. I found this post from The Cacophonic Blog and decided to give it a whirl. It’s just kind of a recap – current update – on my medical status:
- What illnesses do you have? I am living with 2 Rare Diseases; Cowden Syndrome and Lhermitte-duclos Disease. I also had thyroid cancer in 2003 and a prophylactic hysterectomy. I have suffered with depression and anxiety for the last 20+ years.
- When were you diagnosed? The Rare Disease diagnosis came in 2011.
- Have you ever been hospitalized? Oy vey. So many hospital stays. The major ones are for the brain surgeries in summer 2011.
- Have you ever had surgery? See above.
- Do you take any medication? Presently, I take an anti-depressant and something to help me sleep. I don’t know if it’s a symptom of menopause (probably) but I have insane insomnia and do not sleep without Trazodone. I take vitamins and herbs (anti-virals) also.
- What do you wish people knew about Chronic Illness? That is sucks. And, if I’m quiet – please check on me. You’d be amazed at what a quick text can do!
- How can awareness be raised? I think talking about it can do a lot. Many times I find myself “playing the brain tumor card”. It actually helps me cope and accept my medical status if I talk about it! I’m sorry if it comes off rough or if you feel I’m too blunt, but let’s talk about it! I’m not afraid (welp, kinda) and want to talk about the brain tumors and hereditary cancer syndrome. Oh, and follow me on Social Media! Twitter and here for Instagram. 🙂
- Who knows about your illnesses? I actually don’t know. Sometimes, I feel that my friends may forget what I live with daily. However, we all have our crosses to bear, of this I know!
- How do your illnesses affect your life? Oh, this is a doozy of a question. Today, it affects me differently than years ago. I have learned to pace myself, to stay hydrated BEYOND belief, to bring a sun hat if I’m going to be out in the sun (my head HATES the sun now), bring ear plugs with me everywhere I go (my hearing is so sensitive now), and to TAKE A BREAK if I need one. I find that after a long day, it’s best if I go into a dark, quiet room and turn off my brain for about 45 minutes.
- If you could tell the medical community one thing about your illnesses, what would you tell them? Since Cowden Syndrome and Lhermitte-duclos Disease are rare, we need to walk this road together. Most of my doctors support me on this, that we are a TEAM, and what I say GOES. I’m very thankful for them!
Where or where to begin?
I’m up early – couldn’t sleep – and decided to jump on the ‘ole blog because life is coming full force and at times, I can’t breathe. Writing, sometimes, helps me breathe.
Here’s a quick recap on the last few months:
- In January, I lost my rescue dog. I loved him for the past 8 months and he forever changed my life. I was utterly gutted at his loss, but it was time. He was ready although I never was, nor ever will be.
- Finally got the referral to a neurologist (that was desperately needed!) and was told I have (the beginnings of?) nerve damage in my feet. From the brain tumors? The brain surgeries? Huh? What else now?! I had a nerve test last month and it was hell. The dot and the period.
- Do you remember the thyroid issues I have dealt with since last October? Last month also, I had another fine needle biopsy on my (empty) thyroid bed. (So, let’s see that’s – ultrasound/MRI/fine needle biopsy X2) – and there is STILL NO ANSWER AS TO WTF IS GOING ON IN MY NECK! I
had have elevated thyroglobulin and my doctor thinks maybe it was a technician error? Yet something is growing (I guess?) in my neck but it’s not a lymph node or thyroid benign or malignant cells? Ugh, I’m beyond exhausted.
- Haven’t filed BK yet. Found out there was some paperwork I need to submit to one of my creditors.
- My anxiety is getting pretty riled up and I am struggling with even the simplest of daily life tasks.
- I deleted my twitter account. I don’t know why; just felt like the right thing to do. Maybe I’ll be back one day? There are so many wonderful things about twitter, and to be honest it just doesn’t feel right watching Days or Gutfeld w/o tweeting!
- I have this great urge to purge (LOL). Probably the shame and anxiety about the BK.
So, what else folks? Do I continue this morning to wallow in shame or do I put on my big girl pants and get crap done today? I’m sure you know what I want to do. Let’s see if I fight against my norm and do it different.
I saw a Neurologist yesterday!
I won’t bore you with the details of why I stopped seeing one earlier, blah blah blah. Good news is I now have one.
I’m kind of processing everything still – all I have really ever wanted is for a Neuro to “have eyes on me” as my brain tumor (and brain surgeries) symptoms are progressing.
Granted, adding another doctor to my team may seem kind of odd, but this works. 🙂 I have said numerous times to numerous doctors that I don’t expect anything to change. I know there are no miracle drugs to help me manage life now and I sure as hell AM NOT having another brain surgery. Ever.
Until next time!
I’ve made that my thing over the years: Every time I have a brain scan I treat myself to new fun socks!
This year’s pair is an early Christmas gift from one of my BFFs.
(Can’t sleep. Stalling. Putting it off.)
Tomorrow will be here before I know it. Come what may!
It’s been a while, or so it seems. I have been a bit more active on Instagram & Twitter lately, because it’s just quicker plain and simple.
I’m struggling. Hard.
And you know what blows extra hard sometimes? What can I blame it on? How can we know? Is it my brain tumors? Thyroid cancer – and lack of thyroid hormones therein? The hysterectomy and lack of those hormones also? My regular old depression and anxiety? The effects of having my cerebellum scrambled a couple of times?
I am severely constipated. Unlike anything I can recall in years. Doing “all the right things”, and it continues to get worse and a few days ago I about passed out in the bathroom. And yes. I am drinking lots of fluids – water, coconut water, etc.
Additionally, I am extremely exhausted. Again, unlike anything I can recall at least since my thyroid cancer in 2003. I think some people think I’m rolling my eyes at them, haha, but I assure you I’m not. I just literally cannot keep my eyes open. Every time I blink (which is getting longer and more often) I am just trying to will myself to be coherent and uptight upright.
Had the thyroid MRI last week and waiting to hear.
Welp. I guess the good news is I’m not dead yet! I have to file bankruptcy at least before then.
You know what? Some days just SUCK. Plain and simple. I’m dizzy. Nauseous. Bored. Angry at myself. Frustrated. Worried. And on and on…I kinda only realized TODAY that some days are just going to SUCK. And, I did quite a bit yesterday, so maybe that could be why today blows?
Doesn’t mean I’m doing it wrong. Or that I am bad or less than. That it’s my fault I feel like garbage. Or that the brain tumors are growing or that my elevated liver enzymes mean anything BAD.
This is just part of my “new normal” – I’m going to feel like crap
all most days. I just am. Period. I guess the sooner I get on board with this the better I’ll be.
At least, I should start convincing myself of that.