I got up early today; early for me that is. Set my alarm for 6:30 AM and I actually got up! Put on some shoes, drank some water, kinda brushed my hair, and set out for a morning walk. Put in a good 25 minutes so I call that a win!
I’ve noticed lately that I seem to write with no regularity whatsoever. I almost wrote, “with no purpose”, but I realized that’s not true. My purpose is to talk about Rare Disease. To share about what life with brain tumors is like. Before all this garbage, I (obvi) didn’t know anyone with a brain tumor. But now, dear reader, you CAN say you know someone with a brain tumor: ME! I’m going to make it a goal to write about my regular, boring, life when brain tumors aren’t on my schedule. But, wait. These tumors in my cerebellum are always on my schedule; whether I address them or not remains to be seen each day. 🙂
I started PT again this afternoon. I’m excited (?) to see how it goes this time.
I am thankful I started this blog all those many years ago. This has been such a great tool for me!
PS. What happened to the edit/spell check function on here?
I’m trying to kick up my exercise again, because surgery last month put a wrench in things.
crazily, luckily, I got a quick walk in yesterday (I should be doing more intense workouts, but I’ll never stop being surprised at how much walking challenges my brain/balance, etc.) I was pondering about my life (blergh!) and I realized: WOW. I HAVEN’T HAD ANY COWDEN SYNDROME STUFF GOING ON THE LAST LITTLE WHILE. (Granted, surgery. But that wasn’t CS related technically.)
I felt like a normal person! Albeit, for about 15 minutes. But, still I’ll take it.
Because then I remembered I have my brain scan next month because gangliocytoma. And, while choosing to have the prophylactic hysterectomy in 2013 helped tons (no uterine cancer here baby!), I still have to get a clinical breast exam every few months, in addition to the all the other scans.
I guess this is part of what life entails, right? Little moments of breathing in between the big stuff.
Or in my case, the big brain stuff.
Sometimes after I exercise, I think to myself: “Crap, I have 2 brain tumors. Man. This sucks rocks.”
Other times I think: “Man. I have 2 brain tumors and am feeling STRONG!”
Isn’t it funny what are thoughts can do to us?
Today I had both these thoughts, almost simultaneously. Happy Saturday everyone!
Happy Caturday! Ooooh, I mean Saturday. 🙂
I woke up this morning around 8, and fussed around after breakfast. I knew I had several things I needed to do today, and I guess in looking back that started to overwhelm me.
How did I cope?
I laid back in bed and cuddled with Tiggerwigger. Did you know also it’s National Cat Day today?
But then I got back up, folded laundry, and went for a walk.
Each day, I continue to learn how to push through the hard.
Most days, Cowden Syndrome and Lhermitte-duclos Disease lay pretty quiet. Except for the constant doctor appointments and dizzy spells, that is.
I try to live as normal a life as I can. I exercise as often as possible. I volunteer weekly. Yet some days my medical status screams its ugly head and I’m knocked off my feet.
This week, I had had the following scheduled: New psychiatrist appointment, new neurologist appointment (because I was without care for a few months), and a colonoscopy and EGD.
I knew this week would be busy, so I tried to ready myself as best I could. But it’s only freaking Monday! Why are things coming unraveled already?! I received a call this morning from the neurologist’s office. The “doctor” (I use that term loosely) was reviewing my case and decided that she would not see me. You see, I had been under the care of another facility (within the same system, just a different city) but when their neurologist left the clinic I had to make other arrangements for my health care. Just because I have welfare insurance doesn’t mean my health suffers needlessly. I am my own advocate.
I explained the situation, but of course it fell on deaf ears. I was refused care. And, I 1/2 bet it was because she didn’t want to treat me. 2 brain tumors and another Rare Disease. I mean, who’d want to touch me with a 10 foot pole, right?
I lost it. I won’t go into details of what I told this young girl on the phone and what I think of this doctor. I didn’t cuss. I wasn’t rude. Just very expressive of how the decision of this so-called doctor is affecting my medical care. And, my Disability claim on top of that.
My life is in limbo enough. Now, add this neurology fiasco and I feel even more defeated then I do any other day of my life.
Happy Motivation Monday to you all!
My mind is mumbo jumbo right now. Financial fear. Credit card bills maxed out. Delinquent credit cards? Will I have to file for bankruptcy? When will I ever get ahead? Or even?
My mind continues to spin out of control.
I went to the gym tonight. I realized I am very lucky to be able to walk. And talk. And exercise. That I have some independence, even if it’s not exactly what I would like it to be.
I had so much to write about yesterday. My walk and how much I hate it, yet I see the purpose because it challenges my balance so much. How I have been told by a few people lately, “But you look so good!” While that’s a kind thing to say, it doesn’t negate the trials and terror I deal with behind closed doors.
And then waking up to a pretty big headache, unlike one I’ve had in a long while, just ruins my entire
day. (Morning. I am going to work hard so that it just ruins my morning).
As I’ve said many times, there’s quite a bit to manage with brain tumors and a rare disease. Imagine if I didn’t have them…how much “easier” my life would be!
I was just thinking to myself a few days ago, “Man. I can’t wait for Fall.” Coolness everywhere is what this girl wants!
Anyway, I know it’s been a while since I checked in. Been really busy these last few weeks, which of course is a GOOD thing, but then my “recovery” after the “busy-ness” can take me a few days. Even after 5 years, I am still constantly learning how to manage my life now. Granted, I probably wasn’t doing too hot of a job before diagnosis. Now, add all this to boot? You see where I’m going, right? Also, thank you to everyone who shared my crowdfunding campaign. The deadline is in 4 days and I didn’t reach even 50% of my goal. Darn. Maybe I’ll try again another time.
I went out-of-town for a few days this week, been able to sub for a few days too. Fitting in exercising somewhere too. Sometimes, managing the medical stuff really is a full-time job. I had a few appointments a few weeks ago, so I plan to be writing about those soon. And, remember when I said I went out-of-town? Here’s a quick hint as to where I went:
Hope you all have a great weekend!
I had a very rough week. I worked at a temporary job for a few days that kicked my butt. I am noticing certain things are continuing to get harder for me; and that frustrates the heck out of me. I try to put on a good face as much as I can, but inside I’m struggling. I knew that I had to exercise last night. I had to. But, I wasn’t sure I could make it. I wasn’t sure I could drag myself out the door and to the gym. I know it’s good for me. I know there are many benefits of exercising. I know all this. But, when my brain is done for the day…it’s done. I can’t change it, you know?
But I did go workout! I am very proud of myself that I did it. I felt so much better when I got home last night. I am glad I found the strength deep down within me to do what needed to be done.
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!