Wow… there is something to be said for not starting to feel better… If you stay hurting and feeling like crap for the most part… you don’t notice so much when you have a day when you feel way worse. … Continue reading
This morning, I decided to make soup for dinner (which is an all day thing) and brownies from scratch. Turned out the soup was better than the brownies… oh well… won’t use that recipe again.
The soup required going to the store for potatoes, cabbage and carrots (as well as bagles, cream cheese, jelly, popcorn and a nice cold drink)… It turns into a 3 mile walk which was wonderful because I got to watch my daughter come back into herself. She got a little dizzy a couple times, but cutting her Keppra dosage in half to work her way up seems to have had a good affect. This is the happiest I think she has been in months! I am wondering how long weirdness has been going on in her brain that we have been attributing to teenage attitude. I KNOW the attitude will be back… but hey… today was precious.
I have another ingrown toenail which is infected… making it hurt and making my ankles hurt and squishy… but I really needed the walk (even though it meant carrying my laptop on my back in my backpack because it is my pager week).
I was soaking in a nice hot bath when we got home and I realized that a year ago… actually about a year and a half ago… I was at Ren Fest (go TRF) and I was in a great little crystal shop… lots and lots of quartz crystals. There was one that was three crystals all stuck parallel to each other. The shop owner wrapped them in silver wire and made a pendant out of them. She called them the three ladies and she was hoping to find them a healing home where they could help three women. At the time, I thought of mom, me and Amandya… but I didn’t know why other than mom is a breast cancer survivor (go mom!)…
It was an obscene amount of money for a chunk of rock that lays around on the ground just about everywhere… but it talked to me… so I bought it and I’ve worn it a few times… it makes my heart smile.
NOW I know why I needed to buy that rock…
Mom is a breast cancer survivor.
I have RA.
Amandya has epilepsy.
I don’t know that it has any actual healing properties… but it brings peace to my soul and that is healing in itself. I strung it on a chain that came from a dog tag machine and slid it over my head…
Everything happens for a reason.
I keep trying to remember that… my RA is for a reason. If the only reason is to MAKE me slow down and take stock of myself… at least it has done that.
I wonder what purpose Amandya’s epilepsy has… I know that it has slowed me down even more… and it has caused me to reach out to try to help others with the same or similar problems (and to make friends with the mother of one of Amandya’s friends who is way sicker than both of us put together… 15 with RA, Lupus, blood clots in her brain… she has been in children’s hospital for FIVE weeks…
Every day is another day. Every day I reach out and try to find the rainbow. Somedays it is harder than others. Today, it was a better day than I expected.
Posted in epilepsy, Journalling, rheumatoid arthritis, UP day
Wow… what a year. What a roller coaster ride…
Let me start by saying… Dell Children’s Hospital is the place to be if you have a kind with anything. The only thing that I can find any fault with at all if the sofa bed isn’t designed to be slept in… there is a wooden bar that separates the left and right side that (when it is pulled out into a bed) digs into your back and ribs really badly. OH… and the internet is incredibly slow.
The people are wonderful. The library is really diverse. The DVDs that you can borrow are even new releases. The teen room on 4 isn’t huge, but it has a juke box, a foozeball table and a boomerang air hockey table.
The cafeteria isn’t massive, but the food is good and not horribly priced. I will be taking my kid down for breakfast in a couple hours… they will give me a voucher for her so she can escape her room. But the room service that they gave her to order from whenever she feels like it, whatever she feels like eating… you can’t complain.
Last night, at 10:00 she finally went down for her MRI.
The neurologist didn’t seem to think the EEG was going to show anything… at least that is the way he let on to me when we talked night before last. Trouble was… it did. Abnormal spiky and slow rhythms in the back right hemisphere. Could just be the way she is wired. Could be malformed blood vessels. Could be a tumor. Could be scar tissue. We weren’t leaving the hospital until an MRI was done. Yesterday was a busy day at the hospital… and the MRI was busy all day. We spent another night in the hospital because we can’t leave until the MRI is read and interpreted by neurologist and we get a green light.
We started our anti seizure medicine last night, officially. The loading dose apparently didn’t count… that was to just quiet whatever was going on with the back to back grand mals that she was having.
I’m stressing my mom…. 2000 miles away… because she can’t be here.
Me… I was up until after 11 last night and up at 4 this morning and up several times to check on her through the night. I’m freezing. My ankles and knuckles hurt. Coffee is… icky, but it is keeping me going. Yes, I’m eating… not because I feel like it but because everyone is making me eat.
Today, I have to call my Rheumy to change my appt for next week because she is going out of town.
By now, I should be getting a call from PCP on test results.
This morning… I totally regret being off the prednisone.
I was asked yesterday by most well meaning of relatives if I had contacted my support system.
I guess I answered her honestly… this is most of my support system… and you have been notified.
It is amazingly helpful to get messages back that I’ve struck a chord, or just a “hang in there”. It helps so much…
Posted in epilepsy, rheumatoid arthritis
It has been quite a day. 8 pm, sitting on the sofa bed in room 336 in Dell Children’s hospital… It has been a long day.
Sunday February 21, 2010 was a day that I will remember always.
We made it with the washer and dryer people delivering the new stuff and getting it set up. We were getting ready to go to Best Buy to yell about the big scratch they put in the front of the dryer when Adam came looking for me. He wanted to know if something was wrong with Amandya, or if she was just joking around with him.
She wasn’t joking.
When I got to her, she was on the floor, her eyes were rolled back in her head, eyes half open, arms stiff, face contorted, drooling. She was flailing; jerky motions. I was scared… really really scared. When she started to come around to open eyes and focusing on me, I asked her if she knew who I was… Mommy… I asked her what grade she was in in school… she sounded like a 5 year old but told me she was in 8th grade. Later, in the car on the way to the hospital, I asked her how old she was… again… in a 5 year old’s voice, she said she was 13… which was how old she was in 8th grade… 2 years ago. She kept trying to take off her clothes. I got her to the car… we got her to the ER… by the time we got there, she was starting to have some control over her limbs. By the time she was in a bed, she knew what year it was and was starting to be coherent. It was a long 10 minutes.
It is amazing what adrenaline will do…
We stayed long enough for her to pee.
They discharged her, and said, you need to follow up with Neurologist in the morning.
Out to the car… and starting home.
We made it about a mile… maybe a mile and a half.
I was trying to get her to talk to grandma on the phone. She said… later…
I got the phone back and tried talking to my mom and Adam said… Oh crap (although a little more colorful… )
I turned around in the seat and she was standing up in the back seat of the car, rigid… her limbs stiff, face contored, drooling, eyes rolled back in her head, eyes half open. We turned around at the red light… pretty quickly… and high tailed it back to the ER. She was still seizing when we got her there. We had to half carry her, half wheel chair her into the ER to keep from getting her legs caught under the wheel chair.
She got put back in the still dirty room where she was before. They hadn’t even had time to change the bed linen.
She never did come completely around. She threw up several times… even with the anti nausea medicine… she thew up the anti-convulsive meds… they ended up giving them to her in an IV. After a chest x-ray and the IV started… we took a trip via ambulance to Dell Children’s Hospital (where we are now) and settled in.
The hospital is really nice. The decorations… the staff… the rooms… it is a really nice hospital.
The couch is uncomfortable.
The view is pretty.
Dr Reardon came in and talked to us (me… she was still-again pretty out of it). It looke like she probably only has epilepsy. EEG today… and an MRI to rule out brain abnormalities and tumors. But once it is controlled for 6 months she will be able to drive and will be able to have a normal life.
Monday AM.
Called mom and Gin. Larry called (not sure if Hospital is in network or not… double the deductable… lord… At least she is in the best place she can be. Phone is dead. Went down to get breakfast.
Oatmeal, breakfast taco, milk and a muffin (Muffin for Adam). Choking down the oatmeal. Taco will be for later… 3 aleve… 1 bc pill… 1 singluar. Coffee in the family break room.
February 22, 2010
No stress? No… stress.
Ankles hurt. Knuckles hurt.
Scared an 11.
Lots of quality Rheumatoid Arthritis Information from RA Warrior.
You are not alone
Together, we can enlighten the world
A Figment Of Fitness 