I have to work, because I need money to live.
I can’t work, because the headaches and pain and dizziness and memory problems and on…
But I have to work to live.
Living with brain tumors and a rare diseases costs money.
But I don’t have any.
Because I can’t work. But I have to work.
Because I have to live.
WHEN WILL THIS CHANGE?
A few days ago I tweeted out that I need to change my blog name to, “Headaches for Heather”. Because headaches. All the freaking time. And dizzy problems. Added to memory problems, and the list goes on and on and on and on…
I put on a good front most days. I have had 5 years of doing this so I am getting pretty good at it. But, I’m tired, you know? I am freaking tired. I am tired of having to “act like I feel well” when
some most days I am exhausted. No one sees me on the inside, no one takes the time to ask how I’m doing, because I know they don’t “really want to know”. Just the pleasantries. So I do the pleasantries in response as best I can. I am not bitter, just have accepted what now is.
However, when I am feeling a bit lonely (like I am tonight), I wish I had someone to call. I don’t write this for pity from anyone, just documenting my life with two brain tumors and a rare disease and sharing my story in my little space of the Internet. The reality is I don’t have anyone to call. No one to have dinner with, go shopping with, etc. And I have to pause and wonder why that is? I had friends before diagnosis, or at least I thought I did. Where are they now? Have I honestly pushed them away? I am always mindful of the things I now disclose to certain people, and even if others do bring up questions about my health I usually limit my responses (although it does depend on certain circumstances). So, that leaves me the questions: Did I bring this isolation upon myself? Or did those once around me leave because my life became too hard for them to continue to share it with me?
I realized something this morning:
There appears to be a direct connection between “how much” I do one day, to the dizziness I experience the following day.
Yesterday a colleague invited me to dinner, then afterwards I did some shopping. Nothing major in the least! In fact it was very pleasant and I really enjoyed myself.
This morning I paid the price, greatly.
I don’t get it.
Tonight, I just see my life’s challenges differently. Or, they’re coming into focus. I don’t like them one bit, but I see them a bit clearer.
I had a brain scan this week, and saw the neurosurgeon on Friday for the review. I was up super late last night going through the report with a fine-toothed comb.
Just participated in a #BTSM (brain tumor social media) tweetchat.
I had a terrible dizzy episode this morning right after I woke up.
At church last week I had a horrible experience in teaching my Relief Society lesson. The connection between my brain and my mouth was lost. I couldn’t get the words out. I lost it in front of the sisters. I cried.
I also had a good dinner with a friend Friday night.
I bought some new shoes and a new workout top, too.
I have done a lot of sudoku puzzles these last couple of months.
Went to a zoo with my family.
Usually, my brain stuff keeps me up at night, but what I continue to learn each day is that I have to balance my life and my health. I don’t do it well, and I don’t do it often. I just get to keep practicing.
Yesterday was pretty horrible.
Dizzy all around.
A very rough day for me.
But I wanted today to be different.
This morning I chose to get up and go to the gym.
I took a picture in front of the mirror there and here is the caption I wrote:
We have to push through our pain, 99% of the time. But yesterday, I couldn’t push through. I had to stop. I had to breathe. I had to recoup. Sleep. I had to rest my brain. Recharge. Today I made the choice to push through ALL THE BARRIERS and do what I needed to do. Am I healed? Of course not. Am I perfect in dealing with this health stuff? HA. Am I still dizzy as hell today? Well, it’s better. I am thankful. I am constantly learning (and hoping to grow, too) on this road I am NOW on. It is bumpy a lot of the time, and to be honest, I am always a bit nervous to see what tomorrow will bring me. But thank you to those who ride out the bumps with me and❤ me through the hard times!
My next brain scan is sometime next week; and I must admit they still scare me. They still bring up anxiety and horrible memories from the surgeries, even 5 years later. I imagine this won’t ever get better. Today, I am thankful for medication that helps me through this.
I half-wonder if there has been growth on either brain tumor. (The last several years of brain scans the neurosurgeon told me there hasn’t been “significant” growth on either tumor, however I wonder what is causing my symptoms now?) I seem to have had these last 5 years pretty “clear” without many side effects of from the surgeries, but I have always dreaded this day.
So, this is what I know. I know I have 2 brain tumors and I now am experiencing more neurological issues. I know that writing about it won’t change anything, yet I am human and can only handle so much.
In other news: I went back to the gym a few weeks ago. I am rearranging my schedule so that I can keep my commitment to myself to attend this class! It’s been great to have my butt kicked again!