Thursday, November 3, 2016

Brain testing and uncertainty. But flowers, too.

The last couple of weeks I've often said I'm not sure if my memory is getting worse or if I'm just more cognizant of how bad it is. I'm not as foggy as I was in the hospital, certainly, but I'm struggling with day to day memory. I'm finding that sometimes I'm really good and then all of a sudden I can't remember stuff that I know I know. Long term memory has some spots but my short term is a total joke. It's a total joke.

I saw a neurologist while in the hospital and had a follow up in August. The game plan then was for me to come back in November for an MRI to compare it to my August MRI and see what's changed, if anything. A few days after my August follow up I got a call from the neurologist's office to say upon closer look, they saw "something" and would feel better for me to see the neurologist at the other hospital in town to have a second opinion so they could, together, come up with a comprehensive game plan for me. Now, I was initially terrified- what the hell did they see? Surely it's not a tumor, they wouldn't make me wait for a tumor, right? Well then I forgot about it (ha!) and before I know it, it's November.  Time for all of my follow up appointments, with all doctors, to begin.
On Tuesday I had my MRI. It lasted a little over an hour and they scanned my head, then did pituitary specific shots, and then some contrast scans. I kind of love an MRI because I'm not claustrophobic so much and it was the most relaxing hour of my entire week.

Today I went to the other neurologist for what I thought was another MRI and some question/answer type things. It turned out to be slightly more question/answer with some "basic" brain tests but no MRI.
I'll preface this by saying the doctor I saw was really very nice. He didn't make me feel stupid at all, and was truly in awe of what I've gone through. He asked me basic questions and took down some of the symptoms I'm experiencing and I felt really comfortable. As scary and uncomfortable it is, I am always 100% honest. I'm finding it's embarrassing to tell people what I'm dealing with. I feel self conscious and wonder if people think I'm being a baby, maybe I should just try harder, maybe I'm not as grateful to be alive as I should be?

I can't stress it enough- I am in a really weird space that you truly can't appreciate unless you're in it. You think you know how you would feel and act but I'm telling you right now you cannot prepare. You can't honestly know what it's like to be alive after dying until you're in it.

Then we went into the basic brain tests. It starts with a dot to dot exercise, I had to copy a picture, I had to draw a clock or something, and I can't remember what else. (HA!) Then he had me do some exercises to obviously test my memory and I honestly couldn't tell you what else he did but I was there for about 40 minutes. At the conclusion, he tells me I have very clear memory and attention issues. His recommendation is for me to come back for a full day of brain testing which is more involved and would be used in conjunction with the MRI that I had done on Tuesday to come up with a game plan.

It was also recommended that I not be alone with the babies at least, and I certainly shouldn't go anywhere by myself with the kids especially with what I call my "brain blinks". And I really hate having to depend on people. I don't want people to feel like they have to babysit me. My mom comes every day and I'm sure she's getting sick of it, god knows I would. I feel like I should be able to do this on my own, I shouldn't need help. Which then makes me feel like a crap mom. What kind of mom can't take care of her own kids?

Needless to say, my drive home involved a lot of tears. I'm feeling pretty down. I know that I'm only three months out from my AFE but I feel pretty discouraged. I feel like just throwing the cards in and saying screw it. Seriously. There are a lot of days where I feel like it would have been OK if I had just died. Which again, is a really strange thing to say out loud. I would have just faded out and that was that.


But then there are days like Wednesday, it was a rough afternoon. It really was. I struggled with Penelope taking a joke of a nap and then crying for three hours on and off for no reason. Oh, and she's learned how to scream for fun, so that's been exciting. Combine that with Lucy who also didn't take a great nap and I was tired. I was so tired, I was overwhelmed, and I was ready to just go to bed. But just as I was getting ready to give up for the day and say screw it all, family- friends showed up.
They showed up with flowers and a book I wanted to buy. If I wasn't on the maximum dose of anti-depressants I would have cried full out. Instead, I hugged her and said thank you. The best part of what has happened to me are the little blessings like this. It's like every time things get bad, someone out there thinks of me and it means a lot. IT really does. I don't think any of you know how big of a part your generosity, well wishes, hugs, and notes of encouragement has been in me still being here. I'm finally at the point where I recognize that I can't do this on my own and that I really need the village to help me. I'm trying to just keep it together and be positive. I'm not dying. I don't have cancer. Millions of people have it worse than me. I know that. It's just hard. Mostly because nobody really understands the spot I'm in.



middlechild said...

I had this whole thing written and hit a wrong key and it got lost. Just know that we all care about you very much.

Ruth said...

You need to quit thinking that your mom is sick of doing things for you. Really. She almost lost you and that is not something she is ever going to forget and she is grateful you are here and she will be there when you need her.
I know that because I almost lost my daughter many years ago. She had non-stop complex partial seizures and if I had been outside doing yardwork and not there to call 911 she would have seized to death.
I had to stay with her when she bathed just in case. I had to keep a close eye on her though she was old enough.
I do understand that this is how you feel and I don't mean to minimize that. But, I am sure your mom doesn't look it as babysitting. She looks at it as helping you because she loves you and is grateful you are here for her to help.

Julie H said...

:( It all sounds just so effed up. I'm sorry :( I wish I could help you.