Hi everyone. It has been a while since I have been here. I have taken a break from the blog because it was being used against me. My own words were being twisted around and misconstrued.
I use this blog to get things off my chest and just keep my sanity. Sometimes my blog is funny and sometimes it’s philosophical and deep. There are times when I say things that you are thinking but don’t want to say.
This is my safe place. My happy place. I welcome comments and debates are always welcome too. But you have to know me and my way of thinking before you can even begin to speak to me. But do not even be spiteful or mean. I have no room for small minded people or anyone who just wants to see me as miserable as they are.
With that being said, I will begin this blog.
So we are under a self quarantine due to the Covid 19 virus. I am not bothered by it because I am home bound anyway. I very seldom ever leave my house. In fact, I made the comment to my husband that the last time I left the house was in January for my Ocrevus infusion that lasted for 8HRS. Which means I have not left for three months.
We left to go get some sheet metal for the race car. It was a long drive and it was hard on me but I was glad to have gotten out of the house. I paid for it, trust me. Rick said my facial expressions on the way home said it all even though I wasn’t saying anything.
I don’t let on to much when it comes to my pain and illness. I have a hard time accepting it. I don’t want to appear to be whining or bitching. I am dealing with this issue and I hate it for all it is worth.
Since Rick is furloughed from his job, we have made appointments with all of my doctors and specialists. I have appointments with my primary doctor, Ms neurologist, (both of them), pain specialist, psychiatrist, psychologist and spiritual advisor.
I have a hospital bed ordered, a power chair ordered, elbow crutches and a gait belt ordered. I have a breathing apparatus to help me build up my lungs. There is a urine pouch being ordered as well.
My life has been changed since I have been diagnosed. And it is not ever going to be the same. I have to accept that. I am still falling once or twice a month. I am dealing with severe constipation because I only have a bowel movement once or twice a month.
I am so frustrated because I have gained some weight back. I lost 100 and gained 20 pounds back. I am so pissed about it. It seems like I just can’t seem to catch a break. I can’t take a diet pill because of my heart issue.
However, I will keep trying to get better. I have such a fantastic team of people. They call each other and discuss my treatment plan. I couldn’t be happier with them. They will have conference calls with one another and figure out what they are doing and what they want to do.
Now I need to tell you how MS changes you and your life.
You are humbled. Someone else to help you with pulling up your diaper (or what I like to call “my pull ups) . Helping you off the toilet. Possibly whiping your ass.(hasn’t happened yet). Helping you off the floor.
You need help getting dressed. Putting your sports bra on but first you need to get untangled from it because right now you look like a spazmatic zombie that is trying to give you hickies on your own titties. Either way it is not a pretty sight but it is a hilarious one!!!
You are one step away from having your eating utensils strapped to your wrist because you have an issue holding on to it. You can still feed yourself but you look like a infant who has just learnt how to use the big gurl spoon. You are holding it with your fist but you are holding it gawd-dammit!!!
And let’s not even mention what your toenails looks like.. Did you know that I trained my dog to paint my toes?? Sure did.. Yeppp… Lol… We do anything for a Klondike bar, he will do anything for a doggie bisquit.. The male whore!!
Oh speaking of sports bra…. Have you ever seen an exploded can of Pillsbury bisquits? Yea that’s what my boobs in my sports bra looks like in the morning… Scared the shit out of me the first time I woke up to them. 🤣
You lose your pride, your dignity and your independence when you have MS. You try everything you can to make sure that maintain these things but slowly you lose them. You have no control over this situation and that bothers you immensely. Yet the one thing that you lose to MS is friends.
That is the thing that hurts the most.