Monday, February 26, 2018

Something New

I had a brain and spinal MRI last Friday. This was a repeat  due to the fact I had a relapse back in September.  RRMS is very tricky sometimes. You could be fine one minute and feel like crap the next. So in September apparently I had formed new lesions on the spinal cord and they were active. This is what was causing me to relapse. The repeat shows all lesions are no longer active. However, there is no way to tell if those lesions were there when I was diagnosed in 2011 or not. I was told technology is much better now and we can see much more than we could then. They had not checked the spinal column since my diagnosis,  because they normally focus on the brain. 
I am stable on the Tecfidera and have no side effects. There is a new medication they have suggested called Ocrevus. It’s an injection once every 6 months that takes 4 hours to receive. With Tecfidera I take it twice daily. However, I have to be put through a battery of tests, including a breast exam (mammogram). The breast exam will then have to be done every year while I’m on the medication. I don’t have breast cancer in my family. I’ve only had an exam at my yearly OBGYN appointment. I’m leaning towards just staying on Tecfidera for now. 
My Vitamin D has also been consistently low for the past year. They raised the dosage I take and it hasn’t helped. So now I’m taking 50,000 units once a week until it’s where they feel it should be. 
I’m so tired of pills. I hate taking them, looking at them, thinking about them, and having to take them morning, noon, and night. It is a very daunting task at any age, but especially someone as young as I am. My age says I’m relatively young, my insides scream something else. My body fights itself to live and I’m just off on the sidelines watching. I need and want to be back in the game. 

Wednesday, February 21, 2018

Snow Days

If these damn kids do not go outside tomorrow I’m going to loose my ever loving mind. Today was a snow day and because of excessive snow, sleet, and ice tomorrow is as well. The whole state of Oklahoma is closed down. When I mean whole state I mean, The military bases, the airports, all schools, churches, daycares, and other main businesses. Even roads have been shut down due to ice. Some people are even without power because of ice forming on the power lines. All I know is when those two hooligans wake up in the morning it’s play time. I don’t care how many layers you have to put on. You are going OUTSIDE!!!!!!! 

Monday, February 19, 2018

Little Mermaid Ballet

I believe I talked about Wednesday and it being really crazy. Thursday was going pretty good until I get a phone from my oldest daughter. She’s crying hysterically saying her boss has fired her. I’m in the park and kids are screaming and she’s crying. I think she ate a bunch of chocolate that night. 
So Friday we had tickets to see the Little Mermaid Ballet. I had bought them a month earlier and we had been really looking forward to this. I’ve never taken my girls before because they have never expressed any interest. I go at least a couple times a year, (I would like to go more) but it’s just not in the budget. After Act1 they were telling me how much they liked it and wanted to come again. They both were looking in the program and found a musical next month. Tickets are relatively cheap $35 so I’ll see if I can swing it. So Anyhow, at the end of Act2 these dancers come out, holding a young little “mermaid” Ariel,  and hold her up to the light. It’s like a bright light from the heavens that shines down into the ocean. The ballet is over and everyone is clapping. Both of my girls are like “what was that for?” They are both yapping in my ear. I’m like “girls it’s just symbolic. She was a young Mermaid in the ocean and now she’s on land Married to the Prince.” I guess that one thing at the end tripped them up because it wasn’t like the story. We will have to come to more things. 

On the way home we stopped at the Pinkitzel Cupcakes and Candy Shop. We were down in Bricktown and we very rarely go down there. So we got some candy and picked out some cupcakes. We picked one out for my husband, because if we don’t bring him something we will get yelled at. So we had lots of fun playing at the candy shop. We get home and Eden is asleep and we put her candy and sweets up. We showed my husband his cupcake and he literally flies off the handle. This time about how he doesn’t need to be eating sweets and how dare we bring home some 800 calorie cupcake. Oh I’m soooooo sorry we thought of you. If we wouldn’t have brought you anything you would have thrown a fit as well. The girls went to their rooms and I put my headphones in and watched a movie on the iPad. I mean really how dare he? We didn’t have to bring you anything. 
The next day we had 3 basketball games. After the first one we got the cupcakes down. I ate some of the frosting and it wasn’t that sweet. I wanted the cake though. I tore it apart and it had chocolate sauce inside it. I’m like really? My cupcake is ruined. In the trash you go. I hate filling in donuts and cupcakes. Especially on cupcakes,  because there’s enough frosting on the top. We all ended up throwing ours away. That was a waste of $3.75 per cupcake! They do have an awesome candy and taffy selection though. I believe every piece of candy we bought was consumed lol.

Thursday, February 15, 2018

I used to be a very carefree and relatively happy person. At times I still am. My kids make me happy and we have fun, but then there are negative things in my life. I seem to always keep my guard up, because I never know what’s around the corner. Just when I think there’s a little glimmer of hope or that ray of sunshine, a storm cloud rolls right on in. 

I try to be an optimistic person. Always have been, but it’s really hard now in my current situation. I am really stuck with everything and sometimes my brain doesn’t know what to do. I look at all my diplomas on the wall and they are just a piece of paper. For which I still owe  $20,000. This high IQ earned me 3 displomas and debt. And now since MS has literally taken over, I am now permanently disabled. I have been this for years, but just received this label. I really don’t like to call it a label, but that’s what it is. 

Yesterday was my anniversary. It was the usual fancy dinner I enjoy once a year. But things were off all night. I won’t go into details. As soon as we get home I walked into the bathroom, because it’s a long ride home. Then I hear yelling at our kids or rather our teenage daughter. So I’m changing and again I hear “why is there mail on my bed.” Omg seriously the kids put it there so they don’t get yelled at by you. Then I am berated and belittled and the past is brought up over something a very long time ago. Why???? we were just out on our anniversary date. So I just laid down. He says that I “ruined” his night. I said you were yelling at our kids and saying all these things about the past you shouldn’t have brought up. And he says “I wasn’t yelling and there shouldn’t have been mail on the bed.” Are you freaking kidding me? So because there is mail on the bed, gives you the right to yell at everyone and say these things? Really, what kind of person are you? I am really starting to question that. Everytime I hear I’m sorry I know it doesn’t mean a damn thing, because you will say and do it all over again. We had a conversation the other day. You say, I’ve been trying to change and I’m changing not for you, but for myself. I’m thinking to myself, what have you changed? Our children love it when you are gone. They feel relief and have even voiced it to me. The little one doesn’t know what to do. She’s excited to see you and then you scare her. She spends all her time with me even when you are home. That should tell you something. Like hey,  my kids don’t want to be around me maybe I need to change something. 

I know I’m not a perfect person, far from it. Somehow I just pictured my life so much better than this. My papa always told me not to let a man push me around. I try not to let you ,but you’re smooth sometimes. You like to use your size as intimidation, because you know my body is weak now. Papa always liked you when you were a teenager. If he could see you now he would whoop your ass. I wish he were still here.