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.
Tomorrow morning I may or may not go before the Judge in my Disability hearing.
Will you please say a short prayer, or send up good MOJO to the stars for me?
I’m so nervous, but have prayed for my peace of mind and heart for weeks.
Thank you very much.
EDIT: Aaaack. I set this to be published 2 days ago in case I wasn’t near my computer today. Found out the hearing has been postponed. Thank you for the prayers. I still welcome them and am very grateful.
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!
I have to acknowledge this. So, that when I am having a rough go I can come right back to this post and remember.
Driving to work this morning, I caught myself singing along to the radio.
And it literally hit me like a ton of bricks. I hadn’t once thought of brain tumors or rare diseases.
I felt normal.
I felt regular (!)
I felt whole.
My biggest hope is that with this blog I can help someone feel better. Either someone newly diagnosed with Cowden Syndrome, or brain tumors (any), or Lhermitte-duclos Disease, or any rare disease. That by sharing my story as openly as I have it will give another the strength to take their next step forward. You see, I didn’t have that when I was diagnosed. I hope to help it be different for someone else.
I received a compliment today from someone on Twitter (you know who you are!) that absolutely means the world to me. Never, in a million years, did I think of today – 4 years ago. I want others to know that it gets better. Now, I may scream, cry, and get on the pity pot as we are all wont to do, but I do what I can to leave all that garbage here and then go on about my days: Volunteering, working on-call when I can, etc. It’s not easy, but I try.
I have thought about PT these past few days and can’t believe I forgot to mention to him a few things: that I have struggled with fine motor tasks (I notice them. This may not be a big deal to others but I know there is a change) and I should have focused more on my gait as one of my concerns. And also told him that when I need to stand up on things (like when working out) that’s a big, freaking, deal. It really is.
So, I don’t know what tomorrow holds, or next week or next month. I know my next PT appointment isn’t until next week, which will give me more time to ponder about what I hope to do in PT. Part of me wonders if my brain can make these changes, neuroplasticity I think is the correct term. Can I? Is there too much damage? Was my brain scrambled too much to make any progress? Will the insurance people count minimal progress and any progress and give me all the appointments as approved? All this mumbo-jumbo insurance stuff always ruffles my feathers, but I am here to try.
Anything is better than nothing, right? I know I’ll have another post soon after the next appointment because I really want to document this PT journey. I know there will be some tears. Frustrated tears are just par for the course now. But, once I get the tears out hopefully they won’t come again. 🙂
This morning I went to my first physical therapy appointment to discuss the issues I have faced these last several months: balance problems, vertigo, and dizziness. What a whirlwind hour! Although I didn’t know what to expect, I had a rough idea of what it would be like once I got there, and I was right. Thankfully, I wasn’t as anxious as I expected!
When I walked back to the gym I thought to myself, “What am I getting into?” – and then followed the PT back to the curtained area. His first question was, “What brings you here?” and I went into my story:
- 2 brain surgeries
- 2 brain tumors
- Trouble with my balance
- Trouble with vertigo (although I’m thinking this could be medication-related?)
- Trouble with dizziness (which is kind of like vertigo, duh)
The PT had read the notes about me so had a rough idea of what he would be dealing with with me. The first thing he checked was my blood pressure. He mentioned some thing that had several names (I think I have read blogs about it?) and said that we needed to get a lying down BP and then I needed to sit up as fast as I could and we’d take another BP. The BP lying down was 118 over something. I choked and told him that that was someone else’s blood pressure. 🙂 Then, after a minute or two I had to sit up FAST and we took another one. Guess what happened next? “ER” on the machine, and it didn’t mean “Emergency Room” thankfully! It meant a big, freaking, ERROR. So after sitting for about 2 minutes I then had to stand up really fast and PT took another BP. This was not my BP either! 117 over something. Wow! No white coat syndrome this morning, that’s for sure. Whew! Which I know is one of the big parts of PT’s job – to ease the anxiety of the patient. I get that part.
Next, we went to the treadmill and I had to do the neuro tests that I just.cannot.stand! On the treadmill (thankfully, it wasn’t moving), feet together, don’t touch the bars in front of you, eyes open…ready, set, go! I had to stay as steady as I could. Now, that may not seem like a big deal but believe me, it really is. Then, I had to do those same things again with my eyes closed. Then, with my feet tandem (left foot in front, heel to toe and then switched feet), and each time I was timed to see how long I could do each one. My left side (movement, balance, etc.) is markedly worse than my right. This Therapist was right there next to me as I lost my balance, etc. I’m surprised that I didn’t lose my noodle this morning during those exercises. I told PT before that I was going to cry when we began all this. And, I did not! Praise all that is good and holy!
The last thing we did, that I really, really, really, didn’t like, I think was checking for BPPV (but I can’t be too sure?)…and I had to lay on a table with one PT next to me and the other PT behind me with these huge eye glasses on (so they could see my eye movement in great detail if there was any). Laying down quickly wasn’t a problem, except it kind of hurt my upper back. But, when they told me I needed to sit up fast, ugh. I didn’t like that. Not one bit. This type of dizziness was on a whole other level compared to the dizziness I feel when I turn over in bed. It was almost to severe vertigo and I felt like I was going to hurl. It was major. I don’t remember if I asked what my eyes did but there were some small techy-techy convos between both PT’s about my eyes. Urg.
I get 10 visits, and in these 10 visits we will see what, if anything, can be improved. We took a whole lotta baseline data this morning. I told PT that my biggest goal is trying to better my balance.
Here’s hoping to BIG MONEY AND NO WHAMMIES!