Skip to main content

Roller Coaster Effect.

Roller Coaster Effect:

Yay, I'm better and I've been eating more. That is a big key to my knowing I'm doing better. A couple nights ago, while I was at school, I had one of those "seizure type" episodes.  I don't call them seizures, because people automatically freak out and ask me if I start shaking on the floor. 

No, I haven't had any grand mal seizures since I was very little. The seizures I have now are related to my brain freaking out because it isn't receiving enough oxygen. I'm just told to breathe deep and focus on breathing to make them go away. Monday's wasn't that bad. I could stand, walk, and still respond to people. I was just on a very slow speed. It would take a while for things to process, my vision got blurry, and I was dizzy and a little numb.

 Usually, I end up on the floor since my body goes completely numb, I can barely see, and I'm so dizzy I just cling to the floor ( It reassures me I'm on the ground and not moving). Communicating during them takes me a bit of effort.

However, before class was starting I could tell I was getting a little better, so I was pretty sure I would be okay. However, seizures completely drain me. Like I wanna pass out for the next two days drain me. Luckily, it wasn't a full blown seizure, so i didn't sleep away two days and I was able to go to work, etc the next day!

I'm not sure how many other CFers have seizure disorders or if they have similar experiences, but I wish the doctors knew exactly what causes them, so I can avoid whatever it is! Anyone (CFers) ideas?

Having medical problems/episodes always remind me how lucky I am to be so loved.  For example, I don't remember the medical crisis, or the pain, I remember the love. my 2003 hospital scare, I don't rmember how much it hurt, I remember waking up to my friend Michelle sleeping on the concrete floor, cuz she wouldn't let go of my hand. That may be the worse night I have ever had medically, but because she came with my mom at midnight, drove 3 hours to see me and was there when I woke up, it became a memory I love and cherish. My medical problems constantly remind me how lucky I am, I have so many amazing family members and friends! Love them all!

Comments

Popular posts from this blog

5K. I could cry. Beyond Annoyed.

My 5K I paid my registartion fee weeks ago, have been training and I'm ready for the 5K. However, I didn't get to run my 5K today. Why? Because Cystic Fibrosis decided to one up me. I got my spots back friday, and they just got worse and worse. They look like this: They take over my feet, and sometimes my calves. I posted about this a few weeks ago. I had them during the last few performances of Hairspray. I call it the "Mummy disease" because when it happens my joints freeze up and I can't move. So the morning of my 5K I wake up and they are on my thighs...     and on my arms. This is the worst they have been in years. I took pictures to show Dr. B at my clinic on the 11th.  I'm just really bummed and upset about my weekend! I was supposed to run my first 5K!!!!! I then had a bags tournament in Peoria for the Dream Factory, and was then going to head to Champaign for Sat night- Monday! My friend Alex, reserved me a ticket for Ren...

Calling All Who Care!

     Please Read : Okay, so first off I want to say that this post is tough. It's tough to think about and write. However, it is extremely important and a huge topic in the CF Community, and is VERY NEAR AND DEAR to MY HEART!  First I want to ask you... What if I told you I needed a Transplant. That I needed to reach a certain weight, get my kindeys functioning better, get a higher pain tolerance, and get off a couple medications I take right now. What if I said I couldn't receive a 2nd chance at life unless I reached these goals and I raised a certain amount of money that seems impossible to raise. What if I had been in and out of the hospital off and on for the last year, with many surgeries, had multiple infections and my lung function dropped from 40s to the teens and now is slowly dropping still. What if I was starting to wonder if my decision to go through the grueling Transplant tests was worth it. What if I start to get down about my cf and wondering why ev...

A Hospital at Home

Coming home from the hospital takes a balance..... Wait.... Did I just say home from the hospital??? That's right!  I get to leave Wednesday the 18th, after 8 days in the hospital. It was a logistical thing. I have a super important court date on for "Shoes (our AMAZING foster son) soon." So Doc knew before he admitted me that I would be leaving by that day... So what does this mean for me and my health??? Well, I need to make sure I continue the same treatment schedule I would in the hospital. So 4 sets of nebs a day. 8am, noon, 4pm, 8pm. Which means I finish my course of IVs at home. I will be on IV's at least until 27th (so 1.5 weeks left). I came into the hospital on Tuesday the 10th, but we didn't realize until Friday the 13th that my Psuedomonas is resistant to all of the antibiotic options for IVs except one med. So on the 13th we switched to Avycaz, which is a newer, hard hitting antibiotic that was brought to market less than 3 years ago. We were hoping I...