Long Battle

So I guess my long battle with fighting for disability has finally come to a close. I won my case and I’m getting paid. It’s a little surreal. Nothing compared to my salary, but it’s money coming in. 

I’ve worked since I was 15- technically 14 but, that was only babysitting. My first real job was at 15. I’ve worked ever since. I had no choice, because when I was a kid things were different. Sometimes I liked to eat food and there wasn’t any at home. I also wanted a car and I had to buy it. With a car come little ups and downs along with insurance and gas. Luckily my grandparents helped me with the insurance. They were the ones I could count on. 

After I got married and divorced. I put myself through college. Associates and Bachelors paid for,  but I couldn’t afford the tuition for a Masters degree. So, I did what I shouldn’t have done and took out student loans, but only enough for tuition. 

I got married again and that hasn’t turned out so great either. But when I was diagnosed with MS I became an “unlovable” wife. I’m flawed now because I have this disease that won’t go away. That’s because he chooses that. 

So fast forward to last night. I’m trying to pay a few things and he’s telling me what I should do with my money. Oh and my favorite “ I’ll jack it all up.” So let me get this straight I’m going to mess something up? You’ve never paid one bill since we’ve been married the last 15 years  and probably wouldn’t know how to. Oh, but I’m going to jack it all up??? Yeah right. Bite my ass. 

Another of my favorites. “What you’re being paid is a piss in the bucket . You could be out there making 4 times as much.” Did I miss the part somewhere that I got really sick and had to quit my job due to ms and a spinal injury? Oh and  apparently I don’t like myself as well. 

Just watching him talk is exhausting. I had to walk away. It is mentally draining, I just can’t do it. You know when there’s a little knat in your ear and it won’t stop. That’s him. Mr. Narcissist. He’s a real winner. 

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 The repeat shows all lesions are no longer active.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. 

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!!!!!!! 

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.

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. 

Sickness

I took my little one to the Dr. yesterday and she tested negative for the flu. She had a virus and should be gone in 48 hours. Same as my 12 year old. Told she could go back to school this morning. She was feeling fine last night and this morning. I got a text from one of the moms, who’s a helper in the class, that her tummy was hurting. I picked her up after school (prek is half day here) and she won’t eat lunch. All she wants is sprite. She won’t even eat the crackers I offer. I guess it’s back to the doctor we go, if she’s not better in the morning. She’s sad she might miss basketball practice tonight. I wish this would just go away. I hate when my babies are sick. It’s different when it’s me. I’m out of Lysol again. Forgot it at the store last night. UGH!!! 

Flu Battles

This week has been another hectic week. My 12 year old got sick. I took her to the doctor and they said she had a virus, not the flu. She needed to stay home until her fever went down. So no basketball practice or anything all week. She went back to school Thursday. Her birthday was Friday and we gave her a phone. We’ve been holding out for awhile, but there’s so many things going on now. Anyway, she feels better now. 

We go to church this morning and on the way home my 5 year old projectile pukes everywhere. I’m yelling at the other two to get the plastic bags in the back. She keeps puking everywhere and also in the bag. We get home and I’m getting things out of the car. My girls are like “hey we need to have the car detailed now.” My husband pops off “no, that’s costs $50.” Seriously???? If it was your precious piece of plastic over there, you would be on your way to get it detailed. 

I get the things out of the car. Apparently the girls had thrown their jackets on the floor and it got on those instead of the floor. Awesome, because I can throw those in the wash machine. So I grab those and take the dress of my daughter and throw everything in the washer. I had to take the car seat  and everything out. I go change clothes and as I’m doing this I’m being screamed at because, well going to get cleaning supplies is to damn hard. 

While he’s gone I do two loads of damn laundry, fold sheets, clothes, and put them up. My oldest puts my daughter in the bath and then we get her in bed. He comes back and begins his process of screaming at me again. Because apparently I haven’t done enough while he’s been gone. Oh and I spoil our kids. I’m sorry, but just because I don’t hit them and scream at them like you do, doesn’t mean I “spoil” them. Oh and maybe if you didn’t do that they might actually like you. But you know you do you. I’ll keep taking care of MY kids because that’s what I do. 

 

Weekend Fun

The girls and I were up bright and early Saturday morning for a basketball game. My baby, who is now 5, is playing on her first team. We are about halfway through the season now. We decided to stop and get donuts before the game because hey sugar right? Anytime we give her sugar she goes wild. Yeah nope didn’t work. Instead of dribbling the ball she walked with it. Usually she’s the one stealing the ball. She did a few times, but then grew tired of that. She was mad because the ref told her she had to dribble the ball. Her team did win the game though. She was excited. 

We played basketball outside that afternoon and she kept walking with the ball. It’s like she’s just so excited she forgets. So we just tell her every time to dribble. Then my 12  year old is being rough and stealing the ball. So the 5 year old is crying and hitting. They are beating each other up over the ball. Then the neighbor kid comes over and the little one is playing with him, so fighting over. My 19 year old almost got the ball stuck on top of the house. Now the ball looks funny. 

Sunday, we played basketball again. The girls are fighting as usual. The little one doesn’t want anyone coming around her when she has the ball. She is actually dribbling the ball around. I don’t know what her deal is. My husband is home today so he’s ‘directing’ her. Then I go to shoot, my husband blocks it, and I get nailed in the face with the ball. My face was red and he starts looking at the ball. Sees where the ball is messed up. Lol oops 

So this morning I get up, I think my face won’t be red. The redness is gone, but I have an imprint on my nose from the basketball. A stupid red basketball imprint on the side of my nose. Seriously! 

But on a serious note Friday I was starting to feel better from the stomach flu. Wasn’t eating much or didn’t really until this weekend. I was out doing a little playing with the kids and such. Feeling much better. MS can make you feel like crap. You have your good and bad days, but when you have something else thrown in with it... it’s tenfold. 

Opinions

You know I love when people ask me for my opinion. Then I calmly try to tell them what I think and they get very angry. Why are you getting angry? You asked for my opinion. I didn’t yell at you, also didn’t talk down to you, so why are you mad? Again, I can only answer you from my point of view and my experience with the situation, however that was enough. Apparently, I wounded a mans pride because I gave my opinion. THAT HE asked for! Bunch of horse hockey! 

Invisible

I don't know what I'm doing anymore. My life is just passing me by. I hate this disease. Literally hate this disease. My legs don't cooperate half the time and yet I'm yelled at to try and get a job. But how am I supposed to do that when I can't get out of bed half the time? I don't think anyone understands. I'm just invisible to everyone because no one gives a shit. When someone has a disease like this you become a burden. Sometimes I just wish I would've gotten cancer and died already. Because I can't keep doing this. No ones cares. 

New IPhone

So I got the new IPhone on New Years Day. I've had my old phone for 3 years. It still worked fine, but my husband dropped his and broke it the day before. I don't like spending money on phones so I keep them a long time. So I get this new thing and it's so big I can barely put both my hands around it. Every time I push the home button Siri comes on. Like really I'm just trying to get off an app shut the FUCK up!!!! It took me almost a week just to log into all my shit. Then I'm trying to log into blogger and it's telling me I don't have a damn account. So I logged in on the computer and it comes up. WTH!!!!! I hate this damn thing!!! The world would be so much better if we just had flip phones again. SMH... or no cell phones at all. 

Scream

Sometimes I want to scream. I just hate this disease. My body doesn't want to cooperate with my brain. I can tell myself to get up all day long. But when my legs don't want to cooperate and I feel like I've been run over by a Mack truck I just can't seem to do it. The fatigue lately is so bad I just don't know what to do. Probably would help if I could actually eat something. Everything I seem to eat comes back up one way or another. I'm just so over this. !!!!!!!

Christmas Tree

So this weekend we decided to put up the Christmas tree. My husband got everything down from the attic for me. However, the manger (nativity scene) and some ornaments and other lights were missing. After much prodding he went back up there and comes back down with the manger. I have no idea where the remaining items are at. We ended up putting the old tree up instead of the light-up tree, because he brought it down first. I told him it was the wrong tree. It is smaller and wobbly. However, the upper part of the light-up tree ended up having something happen to it last year and we had to fix it. So after Christmas when sales go on for trees, I will buy a new tree for next year and put it up in the attic. 

As I mentioned earlier we couldn't find some of the lights. We have a lot of lights. Indoor and outdoor lights. The indoor lights are small and I use them for the nativity scene and also on the old tree. All my husband could find were the outside lights that were larger. Some were these white corded lights which we had on our porch at our first apartment together in 2003. We actually used them on our house for a few years after we bought it. Then my husband never put up lights again. If he puts up lights he tends to not take them down and we are the family with Christmas lights on the house in July..... 

So after an eventful afternoon the tree was finally up. I watched Bedlam (OU Sooners vs OSU Cowboys) the two Oklahoma teams battle it out on the football field. My Sooners won and I watched my husband get mad. We are a house divided. Lol 

Thanksgiving

Thanksgiving this year was a little different. We spent the beginning of the day at home and then traveled back home. We haven't been there in years. We spent all weekend there on the farm. The girls enjoyed it. They got to spend time with their little cousin, go four wheeling, ride the horses, target practice, and just do kid stuff. Our oldest wanted to go to the casino for the first time. So we all took her. The great grand parents watched the little ones. She lost most of her money. She wasn't happy and said she doesn't want to go back. So it's safe to say we don't have a gambler on our hands. All in all our holiday went well. 

Shopping

I don't go shopping very often. When I do it's just for grocerys. My daughters wanted to go clothes shopping, because they have their yearly clothing allowance from the Chickasaw Nation. They are Native American from their father and this is one of their benefits. I am truly thankful for this! 

So each year, before our shopping trip, we strategically plan where we are going to go and make sure there are sales and coupons for each store. This year just happened to be the start of Black Friday sales. So it was super awesome! They ended up getting tons of clothes and my younger two even got 4 pairs of shoes each. I was even able to get new winter jackets 50% off at children's place. Super awesome! They are set until summer. And we just went through their clothes and I don't think they will need anything then either.  So we are good! 

So by the end of the day yesterday I was really tired. I even came home and helped my middle daughter clean her room and organize the closet. Today we went back to town because my oldest needed a dress for a date. We also got some last minute Thanksgiving items came home and cleaned the house. I am beyond tired. It's been a busy two days! 

Moving Forward

It's been awhile I know. I dropped off the face of the earth for awhile. So I will fill you in. When my youngest was 8 months old my husband deployed for 10 months. This was very hard on the family. We virtually had no help. Everyone who said they would help us while he was gone did not. My legs gave out from underneath me twice and actually went numb. My Dr said these were relapses. I had IV steroids to help with this. The only person I had to rely on was my 16 yr old(at the time). This put undue strain on her. When my husband returned home from deployment there was a transition phase. This was hard on us as well. It takes time to get used to civilian life again. Things were crazy for awhile. I got really sick again about 6 months later. My body was just in turmoil from all the stress. My husband and I then started a workout routine and I was doing pretty good for awhile. But then life happens. He got transferred to a new unit and wasn't able to come home as early and help me with workouts and I got lazy. So last year I bought a Fitbit and started walking. My MS Dr said my legs were getting weaker and I had to keep moving. This past year has been exhausting. My youngest daughter is so hard to keep up with and at times is a trying child. I want to pull my hair out with her.... literally. I seemed to have hurt myself last summer on vacation. Apparently when I went down one of the water slides at SeaWorld I did something to it. All for one day of fun I was sent to 6 weeks of physical therapy. Yeah!!!!! Oh and a pain Dr I am so sick of this!!! Which by the way....the pain Dr is a quack. I seen him once and have never seen him again. I only seen the PA's. I don't even know what this man looks like. And his wife is crazy. She works there also. She came in the room one day and started doing yoga poses in front of my husband. Not just any yoga poses.... I mean ass up in the air in front of his face poses..... seriously. This chic is cray cray. So anyways, I got released from physical therapy and they said there's is nothing else they can do for my back. I have done everything they have told me to do. It's still screwed up. All from a slide? I have no clue. I have hurt it before when I fell, but it never hurt like this. I've also been trying to go back to work for about 5 months now. I graduated college back in 2012 with an MBA. I swear every time you mark disabled on your application they throw it in the trash. So now I'm just trying to get through Thanksgiving and Christmas. 

New baby!

Wow it has been awhile since I have updated my blog! Went into pre-term labor three times, but I managaged to make it to 37 weeks 4 days and on  September 11, 2012 our new little bundle of joy arrived weighing 5 lbs 12oz 18in! She was perfectly healthy! We named her Eden Willow. She's such a sweet little baby!

Baby Boom

Well I was sick for a few weeks again. Went to the ER twice and I ended up being so dehydrated they couldn't get an IV in. The migraine I had was so bad that I literally couldn't function. So the doctor ended up giving me an IV in the femoral artery! Can we say OUCH!!!!!! Yeah he even numbed me before inserting the needle and I still felt it! So gave me the pain meds and then I had to go home and rehydrate with Gatorade. Then the next week I am still feeling sick and I'm thinking it's because of the betaseron. I called my beta nurse and asked some questions. She assured me this was normal and also that some women will miss or have their monthly cycles late. So I thought nothing of it until the second one never came around. I took 2 pregnancy tests and they were both positive. I was freaking out. I called the beta nurse and she said to stop taking the betaseron. Then I called my OB and went in for a blood test and it was also positive. I had all this medication and I was pregnant and the meds were basically mimicking the symptoms! So I went in for an ultrasound today and the due date is 09/27 and so far everything looks good. I am praying that God puts his arms around this child and keeps he/she from any birth defects from this medication. God is in control!

Migraine nightmare

This week has been so bad. Monday evening I was hit with a migraine so I took some meds and went to bed. When I woke up Tuesday morning it was still hanging around so I took some more meds and slept all day and all night. Wednesday I woke up and again it was STILL there! So needless to say I had my husband take me to the ER. They pumped me full of meds and gave me some IV fluids and I felt better. So Thursday I felt really good but woke up again on Friday and the migraine was back and it tapered on and off all weekend. I'm not sure what brought this one on. The doctors have said the lesion on my C2 vertebrae may be what's causing them because its compressing my spinal cord. I am praying that the lesion shrinks with the MS meds. Hopefully then I will not have as many migraines. I hate living a "maybe life."

Growing Up

Thursday our youngest child turned 6 years old.  I can't believe how time has just flown by.  We celebrated her birthday on Saturday at the local roller skating rink. She loves to skate and I couldn't talk her out of doing the party anywhere else.  So we sent out invitations and almost every person she invited came to the party.  There were at least 20 kids and 10 adults.  The party was crazy because kids were running around everywhere and out on the rink.  I couldn't keep up with everybody.  By the time we got home my feet hurt so bad and I felt like I literally couldn't move.  I am beginning to loathe MS.  It wasn't long ago that I could go all day and nothing would affect me, but now it's like I can't do anything for more than a few hours or I am just so dreadfully tired.  IT SUCKS!!!!!  I want to have my life back! Just sayin...