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.
So. Do y’all remember when I saw my Endo and he told me my “thyroid” is growing back and I have elevated thyroglobulin now? (For those who don’t remember, I had a total thyroidectomy in 2003 (and follow up in 2006) for a huge thyroid goiter. It was 10X larger than normal on the right lobe, and 4X larger in the left. Makes a hell of perfect sense knowing what we know now about Cowden Syndrome.)
And how this was over a week ago?
And how his office called me the NEXT day to tell me he wants me to have a thyroid MRI to decide what’s next?
And how I have to “be patient”?
I’m about to spit nails. IF YOU DO NOT STAY ACTIVELY INVOLVED IN YOUR OWN HEALTH CARE YOU WILL BE NOTHING LESS THAN A STATISTIC. THAT IS ALL WE ARE TO THE MEDICAL FIELD.
Here’s all I know as of today:
1. Referral for MRI hasn’t been submitted yet. Full. Stop.
2. Apparently my doctor put the order as “routine”, so his entire staff is on slow-mo. Literally.
3. Said office is waiting on clarification on order from yet ANOTHER department.
4. Was told they “hope” to get info by the end of the week. THEN the referral will be submitted.
WHAT THE EFF IS WRONG WITH THIS PICTURE?! Don’t call me a worry wart either, which is what the receptionist (who had very big balls, I might add) said to me. This is our medical system! I’m not disabled apparently, while I’m living and trying to survive with these 2 brain tumors and watching and watching with a microscope
if when I get cancer!? Cowden Syndrome and LDD have ruined my life. And continue to drag me through the mud.
Yet I’m expected to cope with this crap and bloody anxiety and pressure having to MANAGE my doctors doing their damn job? And if I find out the thyroid cancer IS back….they best be on guard because I will raise holy hell like none other. Thyroid cancer is NOT the Cadillac of cancers and should not or will not be treated differently than any other cancer.
I’m so pissed – if I drank I’d already have downed 2 shots by now and it’s only 9:30 this morning.
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?
I’ve read different blogs for about 30 minutes this Saturday morning. Trying to understand what I am feeling, or at least distract myself from what I am feeling.
Some mornings I awake and think to myself, “I should write today. There’s so much anxiety coursing through my veins, I need to get it out. I need to cry, scream, rant, process it all here. I am actually quite nervous about my breast MRI next month. I wonder if this will be the day I get the news? Will I hear the “C” word that day?
Then I have my consult for my colonoscopy and EGD this month. My esophagus hasn’t been very friendly these last few years and I wonder how my throat looks now? I also just found out that I am now going to have to pay every time I see my doctors, and believe me, there are many that I see. So, I don’t work with any regularity and was denied disability, so how in the world can I afford to pay the doctors every time I see them? OH, I CANNOT PAY THEM. That’s right.
And, even though I can work on-call some days, when I am feeling well enough, I still cannot avoid bankruptcy. And, I had 2 job interviews these past 2 weeks and didn’t get either job! What gives? Why can’t I catch a break? My life sucks and I cannot get my head above water. I feel like I am drowning, literally. I don’t insist on much. Really. And now, I don’t hope too much either. I’m tired of the stress. When will it end?
Whoa. As I just wrote that I felt a lightning bolt – that’ll happen when I’m dead.”
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?
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?
I created this teespring store to raise money for my living expenses plus to raise awareness for Cowden Syndrome and Lhermitte-duclos Disease.
Take a look at the new shirt I created just now!
PS…if you know anyone that creates artwork or is willing to donate their time to help me create more shirts, please contact me! Thanks!
You may think getting diagnosed with 2 brain tumors and a hereditary cancer syndrome is bad?
Try getting denied for disability.
This is actually worse.
I try really hard to be brave.
I really try hard to be strong.
You cannot survive without money.
I am broken.
What is the point anymore?
Approval would have helped me avoid filing bankruptcy. That’s now next on my to-do list.
Every time I think about it I begin to cry.
Every thing I am feeling and thinking now is exactly what I feared would happen.
Well, folks. I made it through the hearing.
I have refocused my thoughts since then to positive ones, but believe me, it’s very hard.
When I walked out of the hearing room I broke down. From the pent-up emotions, things the judge said, my stress, everything. I just lost it.
But, in the time that’s passed I keep reminding myself that: I DID MY VERY BEST. There’s absolutely no point in rehashing what I “wish I would have said”. I will hear the judge’s decision in 30 days.
I am repeating to myself a mantra: “I am health. I am wealth. I am love” – which translates to: I don’t want breast cancer. I want to be financially stable. I want significant love in my life.
Thank you everyone for your prayers and good thoughts. I am envisioning success!
I think most of the Internet knows of my financial distress – and to those who are important and trustworthy, I don’t keep it quiet. I do try to focus on the positive, yes. But, the reality of life with brain tumors and a rare, hereditary cancer syndrome is tough almost. every. day. (I’m not discounting the hardships other people face.)
But, I digress.
Trying to steer this post from being “too ranty”. hehe
Recently, I was on Twitter and had shared my gofundme link or had tweeted something brain tumor-financial hardship related. Someone reached out to me and suggested I get in touch with this organization.
I got on that in a hot second.
To be honest, it’s difficult for me to be positive (or hope) for good things to happen because my life doesn’t work that way. My life is hard. I’m alone. I’m managing my life as best I can but forced to depend on my family, which is limited at best. How I haven’t had to file bankruptcy is beyond me. But I don’t think I can put it off much longer, either.
Anyway. I contacted Mission 4 Maureen immediately. By their grace, I was granted financial help. Thank you Mission 4 Maureen! Thank you for what you do to help those of us living with brain tumors. And, I ask you dear readers: Please visit their website. If you do Facebook, please consider “LIKING” their page and support them in any way can.
I thank you sincerely.