Seven years ago, this was the day that changed my life direction completely. Seven years ago, this is the day I’ll never actually remember.
Part of me is grateful for that storm, for that tree. If I hadn’t been running and got hit by a tree, I wouldn’t have discovered my MS when I did. I wouldn’t have gotten treatment right away. I wouldn’t have had a name for my random issues.
Part of me is bitter for that storm, for that tree. I could have gone on not knowing and been just fine. I may have made it years without any major issues. I could have lived blind and just fine.
It’s hard living with both feelings so real and powerful today. I am still learning to accept that this is my reality. I remind myself that the day of the storm didn’t define who I am, it just added one more layer to my story. I can be okay with that… some day.
When the sharpest words wanna cut me down
I’m gonna send a flood, gonna drown them out
I am brave, I am bruised
I am who I’m meant to be, this is me
Look out ’cause here I come
And I’m marching on to the beat I drum
I’m not scared to be seen
I make no apologies, this is me
I am blessed with being quite clumsy at times. People have actually had their doctor write a letter to let people know that they aren’t drunk, they just have MS. It’s just one extra layer of the brain neurons not always firing quite right… do to my immune system attacking my own brain.
So with all of that said, I’m getting skilled at powering through and finding different ways of coping… especially with the giant bruise currently on my knee.
Here are just a sampling of the results of my grace due to either falling, bumping into things, reacting to meds, or who knows what
With all of those, and many more, I can choose to give in or get up.
Sundays are a day of rest… mostly because I have to recharge from the previous week.
I’m doing a lot better now that I’ve been going to the gym and working hard at staying active and healthy, but a week’s worth of energy still can take it’s toll. The hubby is still amazed at my ability to literally sleep until 1pm or later on especially tough weeks. Thankfully I have a supportive family that allows that to happen.
One big symptom of MS is brain fog. You know when you walk into a room and can’t remember why? That sums me up on a daily basis. That word that just on the tip of your tongue? It might as well be in China some days. If I told you I was going to do something and I haven’t, I don’t get offended when you ask again. I know I forget, it’s not a secret. Just like the fact that I was going to post daily this month and already forgot the second day. That sums up a huge part of my life, I forgot.
Speaking of other things I forgot – Here are just a few photos I meant to post on here
March is MS awareness month and since I am all to aware of it, I thought I’d share some love this month.
This week I learned that because of the daily injections I used to do to attempt to stop my immune system from attacking my brain, I instead attacked the fat cells in my legs. The medicine killed the cells, creating a large dent in my right leg. Because I’m working hard at improving my health and body, it is becoming more and more evident. I guess I have a long way to go to get rid of more fat so it can have the chance of evening out.
In honor of Dr Seuss’ birthday today, I have a picture of my own Thing 2 from the school reading night tonight and a poem I found online…
Dustin got the fun opportunity to travel for work… all the way to Iowa and Illinois. What it meant was that he got to work long days while we attempted to hold down the fort.
It made me all the more grateful that we have each other and are a team.
I have been doing well with my trial. I get to do a phone interview every couple of weeks to make sure I haven’t tipped over yet. Every couple of times for those, includes going in for blood work. I also throw in a quick physical and vaccines as well. I don’t get another round of actual meds until July.
Other than the giant welt and itchy red spot from the last round of vaccines, things have been rolling in the right direction.
Thing One is finishing up second grade. While he has excelled and learned so much, he still complains about going every morning. He takes longer to complain about the work, than to actually do his homework. He will just choose to read though, and will loudly proclaim that he loves science.
He performed with the entire second grade to sing songs for parents. He was so nervous about messing up. It was sweet how big he smiled when he saw us sitting in the audience though. I may have a musical kid yet.
He is still going strong with Cub Scouts. He just earned his wolf badge and will graduate to a bear in June. He looks so handsome in his outfit.
Thing Two is finally stretching out and has grown multiple inches.
He’s so excited that he’ll get to go to kindergarten in the fall. He’ll get to go to the same school as his big brother. For now, he’s loving preschool and looking forward to summer fun.
This summer both boys will be at work with me. They’ll get to go on field trips together too. I’m excited to have them able to bond and be big kids together.
We’ve been able to get to the cabin as a family for a few weekends now.
It’s awesome to see the boys so independent and free.
Basically, we have been very busy but happy together.
So I’ve gotten one whole dose of medicine in and I’m still standing. This first dose was cut in half with two weeks in between. Except for feeling slightly off and worn out right after, I’m doing pretty good. The infusion center was really nice and the people there are great.
I now know why I had to have my liver numbers down before I started though. The medicine is a chemical already found in very small amounts in the liver. This medicine is filling my body with a whole lot more of the chemical. So… my numbers once again went up. Not nearly as bad as before, but still up. So for now I have to once again watch what I do and watch out for any signs of turning yellow.
And now for something completely different…
The other weekend we went on an adventure as a family. We didn’t tell the boys what we were doing and they were dying to figure it out. Somehow trying on swimsuits to see if they still had any that fit didn’t give it away.
After circling the parking lot and entering the building, we were instructed that the line to enter the Water Park of America was “around the corner.” What they didn’t tell us was that there were multiple other corners to go around before finding the end of the line. It took us almost an hour just to get inside.
Once inside the boys had a blast! The lazy river was a big hit, especially with the tall one. Although he didn’t think it should be so lazy. There were many different slides of differing heights. There was even a bunch that went outside the building. The best part was the body-board section.
After splashing and playing all day, it was a successful day of adventures.
And finally, there seems to be a growing trend on how my child would rather play.
Apparently he has an aversion to pants… Go figure.
The trial company said they would not allow anything over a 2 week extension. That meant I would have to get a new blood draw, get the results back, get an MRI, meet with my doctor, and do another neuro exam by another blind doctor before starting the trial by the 29th. The first response was that it couldn’t be done. I wasn’t okay with leaving it at that without trying. I was told to wait and see what could be done.
After pushing and questioning, they were able to piece it together to at least give me a shot. My blood draw was yesterday and then it was yet another waiting game.
It wasn’t until late this afternoon that I finally got a phone call.
I’m 52! Of the multiple liver tests that they look at, the one that mattered is 52. While normal range is 3 – 34, the trial’s cut off is twice the normal limit. 68 was the magic number to get below and I made it!
I’m still above normal so I still need to be aware but I’m getting there. Soon I can rejoin the land of normal functioning livers.
I go for my MRI on Friday morning, see doctors either Tuesday afternoon or Wednesday morning, and start my baseline visit on Wednesday. I’ve never been so happy to get poked and prodded.
Thank you everyone for all of your kind words, thoughts and prayers, and listening ears as I have stumbled through this process. I have gone on an emotional roller coaster and I’m sure I’m no where near finished. I really am grateful for such an awesome support system I have. It’s good to know I can both celebrate and cry among friends.
And so the story goes… I’m once again in limbo land.
I got the call with my results once again. It’s not a good sign when they don’t leave a message on the first call. I’m still too high. This time I got the actual numbers and I’m amazed I am still functioning with how high my first numbers were.
At this point I’m at the end of the window for the trial. We’re going to see if they will grant an extension but I have no idea what the chances are for that to happen.
I know that I didn’t get my MRI this morning and I have an appointment scheduled for Tuesday to talk about other options. I know that I’m very depressed and frustrated. I know that it’s all out of my control now and that’s scary.
So for now I wait and pray.
Thank you everyone who has been thinking and praying for me. It means a lot. It’s awesome to know I have so many people around me who care.
And most importantly, thanks for letting me vent and be the sad panda I am lately. I can only hope it will get better soon.
Made Strong
