mayo surgery update:
I am still a prisoner in my home, but boy have I learned a lot. Overall...just accepting and still having to "WAIT AND SEE".
This phrase has been way over used these past years in our family. Yet, today we still "wait and see". I notice my last post was over a year ago. Finally, I am maybe ready to piece something together. Well things have changed and stayed the same. I am happy to report I am healthier than I was a year ago! YEAH. Thanks to some hard work and dedication from my team (sisters doctors parents kiddos amazing husband friends) I took my first trip to Mayo Rochester in December 28, 2013. Spent time there taking numerous physical and mental tests. Big fun! The final decision was made and surgery was set for February 6, 2014. I was to have a right temporal lobe resection/amygdalohippocampectomy. (one of the longer words in the medical word I was told. 6 hours, 32 staples, 13 screws and one bad ass question marked shaped scar on my head (I try to feel tough), I awake from the surgery with
We took brain out, not put brain in. Dr. Britton. My Neurologist at Mayo told me at a follow up visit when I asked him if I genius. HA HA.
Now I am realizing I need to make a long term plan to deal with this new life I was handed. This isn't a 24 hour bug. I have epilepsy and might have seizures for the rest of my life no matter how many meds I am on. I am on 3 right now. I have lost a lot of weight, clothes don't fit, don't like to eat, meds make me sick. They are working for the most part, we still hope for better though. Some days are good others are not so good After surgery I went through physical and occupational therapy. My math was easy to the kids..they thought that was funny. My handwriting is still pretty bad. Tremors are not fun. I have pulled away from my friends and my family at times. I just get so frustrated at times. I would like my independence back.
We are healing again...a road traveled before...but here we are again...should know how to do this, but it is different again. harder this time. Kids have to do it all over again.. they too are struggling to understand why again? cuz mom looks healthy..people don't seem to realize you are not. They ask a lot if I am better. Hard to reassure, if I don't know. Don't want to lie, don't want to scare. Easier to just always say I am Ok. BUT really ready to know, what do we have leftover from May 2012, when that damn bug somehow got into my brain?
.
FUN STUFF:
R reminding me I got sick when he was in first grade...
C made a brain in school and gives brain facts for PDR. She is creating brain awareness through her art work. She branches out of the medical world and drew a beautiful piece that was featured in a local gallery here. I have to brag about my kids...my only job is being a mom these days.
S doing her plays but struggling with rides. loves big medical words. how many 15 year old asks for scrubs and a stethoscope for their birthdays? She has become a HUGE epilepsy awareness advocate!
C/R got science lesson with recent blood draw, we have some interesting field trips...we have learned to live with what we have and not focus on what we don't. I fall into the trap a lot, I don't like the strange new shape my body has become, but I can't change, so I have to change the clothes I wear. Yeah, I miss my heals and jeans, but now I am learning the value of leggings
Kids keeps graduating... now I will have 3 that have graduated during this ordeal. DANG.
I think about this and ask my doctor if my life will be the same again and he replies with similar comments: "could you do it before surgery?" then you should be able to do it after, with time... but if I didn't know it before, I still don't.....I don't suddenly know how to play the tuba, haha.
W graduation.
I am still telling kids no to activities. We got rid of the cat and are selling the house to be in town to be able to walk places. Things are better though! Healing from surgery physical was easy for the most part, mentally it has been a challenge. I have a great counselor I meet with and my neurologist and nurse here are wonderful.
The last MRI was clean. Took out all the bad. Now need another MRI because of some seizure like activity going on. Have to keep close eye on all this, I think everyone wanted the surgery to be the miracle answer...it was by far the hardest thing I have dealt with in my life and still am dealing with
.
Today is almost Easter of 2015. Almost a month ago I turned the big 40. I would have thought that my life would look like it does today. I am still unable to drive because of seizures.
Since the surgery, they are MUCH better. I have might go a even a week without one, that is a good week. That does keep me from driving though. It is so hard with the kids. I can't even explain how much it sucks to not be able to go pick up my kid at school immediately when the nurse calls and says C just threw up and is sitting in the office waiting for a ride home. I have to track down a ride to go get her. I hate having to get a ride to my never ending doctors visits because of the crazy weather we have been having. Let alone planning my life around my driver's life....this basically leaves me with not much of a life. I spend a spend a lot of time home bound, it is a good thing I like talking to myself. It isn't all bad. I would not change having the surgery for a minute. It has greatly improved my life. I just would like to get to a point of getting back to work and feeling more like my life has meaning. Still very lucky overall, I know! Somehow that doesn't make day to day easier though.
Okay, enough venting. Good stuff, w is about to graduate now. The kids are all doing well. Courtney started her clinicals, almost an RN. S got asked to be in a play, she didn't even have to audition for the part, she was over the moon happy. She is playing Rosie in THE GREATEST FAIRY TALE NEVER TOLD at The Verge Theater. W is enjoying his time at Montana Tech. D is producing new videos weekly online....
I got a new tattoo. A brain symbol on my right hand. It felt good to FINALLY do something normal to my old me. It is a tiny start to getting back to normal I hope. It is purple to match my new hairstyle.
 |
| Dealing with daily struggles, but still optimistic! |
Even with mental struggles some physical struggles OVERALL....we will prevail. Time to find a new adventure.
