Yesterday morning I had another scan. I wish I knew how many I’ve had since diagnosis. (I bet it’s 10X more than I think.) You know, I
think hope wish that every time I go it’ll get easier. It doesn’t.
I have to ask the MRI technician every time the following questions:
- What if there’s a power outage while my scan is happening?
- What if something happens to you while it’s happening?
- What if there’s an earthquake while I’m in there?
- What if there’s a natural disaster? Or an emergency at the hospital while I’m in there?
The technician is pretty funny; he knows me by name and me him. He always talks me off a ledge, which I appreciate. Plus, I’m usually medicated so that helps 150%, too.
I practiced my visualization: I am at Disneyland. I am at the front entrance getting my ticket when the scan begins, then I start to make my way through the entire park. (It’s a neat little tip that works for me!)
Just like when I see the oncologist for my breast exam and think, “Is this the day she’ll find a lump?”, I found myself thinking yesterday, “Is this the day there will be growth on either tumor?”
We shall see.
Sometimes, I wonder how many people have been forced to file for bankruptcy once being diagnosed with a life-changing disease? While I know it’s not healthy to be so focused on my dire financial situation, it’s really hard not to be. It’s really difficult to not be depressed about my current state of affairs. And, I see no end in sight. My brain is now damaged. I have a brain disease. I’m desperate. I don’t know what to do.
This isn’t pleasant. This isn’t fun. This is my life and I wouldn’t wish it on anyone.
I have thought for the last few weeks about what I can write about. What I can catch you all up on, because life has moved very quickly as of late. Mammograms, kidney scans, dizzy episodes interrupting life, etc.
While that’s a great thing, it’s also sometimes difficult for me to manage.
But, regardless, life happens on life’s terms. I continue to learn that.
I just clicked on a blog I follow, and found out the devastating news. I never met this person, but I was one with her.
I am so sad. I am so sad for her family.
I haven’t written in a while, because I just don’t know what to say. I try to be positive most days. I try to keep a smile on my face and take one day at a time, because let’s face it, that’s all any of us have anyway, right? But, I have been quiet lately because I don’t want you to think I am a complainer. Surprisingly (to me), I have held back. Usually, this blog is my safe place to let it all out. To scream if I need to, to cry as well. Suffice to say, there has been a lot of screaming and crying lately. Things are getting much worse financially for me and I don’t see an end in sight. I’m not trying to sound dramatic I am just being real. I am not able to maintain full-time employment (for many reasons), I don’t have enough income coming in to cover my basic necessities, let alone a new pair of pants and/or shoes that I desperately need. (Last week I broke a tooth and found out I need an extraction and implant. It will cost $3,000 to fix.)
A few months ago I qualified for state help, but made “too much” last month (I am thankful that I am able to sub some days!) and now I qualify for $17/month in assistance. I never realized how money is connected to everything and if you don’t have enough of it it can ruin your life. My mental state of mind has never been more fragile than it is now. I have eaten terribly lately because of the stress of not having enough money for my living expenses. Getting diagnosed with Cowden Syndrome and Lhermitte-duclos Disease has ruined my life. Plain and simple. I don’t see how my future will ever be any different from what it is today.
This is a free-write.
Today was supposed to be “ultrasound day” at the hospital. But, no one bothered to tell me that I needed to be fasting for the abdominal ultrasound. Scratch that then. So, I only had my thyroid ultrasound as scheduled. Thankfully. This technician was a new one; normally the hospital staff knows me by first name, or at least by “Cowden’s Syndrome”. I didn’t care for her all that much. I’m just going to say it here: IF YOU DO NOT OWN THE EMPATHY GENE IN YOUR BODY THEN GET THE FREAK OUT OF THE HOSPITAL. STAT!
She kept saying to me, “I need you to move your head back. Can you move it back more?”
(Well, lady. I had brain surgery 2 times and part of my skull is missing. I don’t have the range of motion like I once did. So, the short answer is NO.)
But, I was willing. And I tried. At first she
wadded rolled up some hospital gowns and wanted to put that under my shoulders to have my neck be at a specific angle. I almost spit out my water because I thought she wanted that to go under my head! No freaking way crazy lady! I am not putting anything like that under my head. (I’m just thankful I can put my pillow under my head, and even that took a long time coming.)
In the past, thyroid ultrasounds I have experienced have been a bit more involved. Meaning, the technician is mowing (my word) the wand all over my neck and clicking away on the keypad. Today was different. She was almost babying my neck. Now, in her defense, I had told her about the brain surgeries, but that shouldn’t have made any difference in how she did the thyroid ultrasound. (Note: I must continue to have thyroid ultrasounds not so much of the thyroid cancer risk, but to watch the small amount of thyroid tissue that is still remaining in my neck. Since Cowden’s Syndrome is tumor/cell overgrowth – it just needs to be watched.)
I left the hospital and came home to some work “issues”. I get that we all have work issues. Life is in session.
No getting around that. But, as hard as it is for me to admit it – I need some help of the pharmaceutical kind. I didn’t want to get back on medication. But, I think I need to. I am having such difficulty dealing with life on life’s terms. Because, I don’t like life’s terms right now. Period. I miss having money. I miss having independence. I miss having a life FREE from all this crap. I don’t have the tools to manage this. I just don’t. I admit that. I feel like a failure. That I couldn’t do it by myself. But, I really can’t. And it all boils down to money. Money that I don’t have.
Part of the reason I post the “Photo of the Day” and “Fun Fact Friday” is to make sure I have some positive things to focus on here. Because out there? I have enough negative to deal with. Don’t we all though? What makes me any different? I’m not really. Of course. But, I want to be! I want to have a rich and full-filled life but without money (read: job) how is that even possible?
So, I come to my blog. I get on the whiny pot for a while. And, it feels good to write about it and to own it all. Own all my fears. My failures. My hopes. My dreams. My frustrations. My anger. My sadness. My terror. All of it. I own it here because it’s a safe place for me to do that. But, no sooner than I finish a blog post about what’s affecting me presently, then I need to leave it all here and go about the rest of my day.
The perfect job doesn’t exist. The perfect health/body doesn’t exist. The perfect life doesn’t exist. I get all that. I don’t like it; but I get it. What I get to do today is try to come to terms with what’s in front of me.
And, I will. It make take longer than I expected. But, I will.
I saw the counselor today and I sure wish I was able to see her more often, but working it around my work schedule is hard. Today was hard because I am feeling guilty for feeling scared. I “was” rather. I was “should-ing” all over the place. I need to give myself more grace with all of this. I need help. I need more sleep. I need to exercise so that I can increase the serotonin or whatever ti’s called in my brain. But I’m scared to put more stuff “in” my brain. I’d rather keep to the natural stuff (turmeric, etc.) and not do the Lexapro stuff, but what’s going on now isn’t working.
It’s just an emotion.
I am scared. Scared of so much but I have to work on acceptance. This Cowden’s Syndrome isn’t going away and I have to learn to live my life WITH it. My fear is starting a pill is going to be a crutch that I will have to be on FOREVER and I don’t want that. Acceptance. Fear. Scared. Future. What will be of it? I just wanted to have the happy life, or what I thought that entailed. A husband and family. Is that too much to ask? Life isn’t without fear, of course. And life is about learning how to LIVE life – with what you are dealt. I am dealt this. Emotions come and go and I have to figure out how to manage mine and ideally I’d like to do that w/out meds. But I think it’s time to give in.