In honor of Annette, we made Mickey Mouse ears at school yesterday. She was a strong role model for the MS world and it’s sad that she lost the battle. Now she’s in a better place with no pain or limitations though and that’s a good thing.
Also, it is April 10th and there is snow! They said on the radio this morning that there is a 100% chance of snow tonight. Yes, 100% chance. It could add up to more than a foot of snow too! So much for spring.
So on a happier note…
Thomas loves oranges but hasn’t quite figured out how the naming system works. He often requests a green or purple to eat. He knows color words but hasn’t matched them to their actual colors yet. It makes it challenging when he requests a specific orange car.
March 11-17 is MS awareness week. To most people, the orange ribbon is just another ribbon. It’s just another cause. To me it’s my life. To over 2.1 million people worldwide, it’s a daily reality.
Most days I could just forget about orange. I don’t really have symptoms like tingling anything or not working parts. I do have the fatigue problem though. It would be easy to blame it on being lazy but being past tired is true. It’s like I need to recharge after so many days. I can literally sleep a whole day away. It’s hard to do when you have a family and a life. I’m very grateful for an awesome husband who has stepped up and allows me to be my special self.
Orange also means forgetfulness. Things just disappear. Words are just gone. If I put things down, they may as well have never been. There has been more than one time that I’ve had to change because I can’t find one shoe, only to find it sitting out in the open later.
Orange means stabs and pokes. The medicine that is attempting to keep me healthy, gives me bumps, lumps, and bruises. Those bumps, lumps, and bruises cost a pretty penny for the privilege.
Orange means not judging others. Looking at just this one malady, shows that there is so much out there that we don’t know. We don’t know what others are carrying with them. We don’t know where t they’ve come from or what they’ve experienced in their lives.
Orange can mean many different things but really I hope that it means you stop and think.
I know most people would be sharing cute Christmas pictures and/or year in review deep thoughts. I might get to that but for now I have something much more important. I have solved the age old issue of bath toys. In order for things to be extra fun, for two boys no less, bath toys pile up. We’ve tried baskets made for said items. I’m not sure if they try to make the worst suction cups or if there is some component in the surround that repels any suction. Either way, they don’t work! Also, they always fail at odd times and scare the pants off you when you hear the giant thud. Now the toys end up either scattered around the bathroom, in the tub, or shoved in drawers. It’s not exactly the best way to store them it get them dry and goober free. I have found the answer. I’m rather proud of myself! I put a shower curtain rod against the wall, up high. I found plastic baskets and cute hooks. Sha-bang, problem solved. I even made Dustin stand in the bath tub and pretend to wash to make sure they weren’t in the way. Now we have two baskets of toys and one of liquids. Life is great!
Also, because I was in the shower section I had to get a new curtain. 🙂
And to go with the theme of the hour- Peter got a bathrobe for Christmas. (See totally included Christmas in there!) He was quite proud and had to show off the new duds.
So the big thing on facebook is to post something you are thankful for each day. I have a hard time just remembering to post, much less every day. So, you get one big ol’ thankful post right here and now.
The list of thankfulness is in no particular order. It’s just what is going through my head. I’ve learned that I have to do things as they come or they’ll be gone so bear with me.
I am thankful for my husband. Dustin came back into my life at a time when I was ready to give up on guys. He showed me what real love looks like. When we stood across from each other in the chapel that very hot May day, we promised to stand by each other no matter what. We are partners, growing and experiencing life together. We may bicker here and there. We may not see things exactly the same all the time. We do listen to each other though. We help one another and lift each other up. I am thankful I was able to marry my best friend and that we get the chance to get old together.
I’m thankful for my boys. As often as they drive me completely crazy, those two boys are my world. I remember that day they said we could leave the hospital for the first time as a family of three. I was scared to death that they were going to just give us this little being and I had no idea what I was doing. Now I look at them and they play and actually care for each other. They are funny, brave, smart, loving, and learning more every day. In all of that, they are teaching me about the world and about myself. I count myself lucky to be able to be their mom and I only hope I can do things enough right that they continue to be the wonderful boys they are now.
I’m thankful for my parents. I distinctly remember being a teen and in the middle of one of my screaming matches. Mom’s response was, “Go yell at your Dad!” I think Dad heard and went to hide. Now I look back and remember all of the times they were there to drive me, encourage me, cheer for me, and push me. I wouldn’t trade having my mom around for anything, even though I may have complained about all those darn kids in our house. It is truly love to wipe noses, sit through bad recitals, and help an ungrateful child succeed.
I am thankful for friends who support and love me. I know that I can be a bad friend. I forget things and fail to follow through far too often. That doesn’t mean that I don’t care about you all. Each of my friends plays an important role in my life. I know I don’t say it enough but I am thankful. Everyone needs true friends that will keep coming back, celebrate when things are going well, and listen when things aren’t so great.
I’m thankful for medicine. As weird as that sounds, it’s true. Just a few years ago I would have never imagined I’d be saying that. Now I grumble every time I have to stick myself. I get awesome bruises, welts, and dents. But even with that, I am learning to look at it as a badge of honor. Science has come far enough that I am able to take that stick and help protect my poor brain. It allows me to put up a fight and say that I’m going to do my best to stay strong.
I’m thankful for my doctors too. Not everyone can say they have a primary doctor, an eye doctor, and a brain doctor they can call on. Each does their part and knows my case. They are working together to keep me afloat.
I’m thankful for my house. It may not be a mansion but it’s home. We have somewhere to go to stay warm and dry. We have the ability to gather together as a family and space to find alone time. Of course there is always things to fix and there will always be something bigger or better but this one is ours.
I am thankful for work. In the morning I complain about getting out of bed and who really loves going to work honestly. But in reality I am fortunate. I have a job that accepts my quirks and that I love. Nowhere else do people get paid to play. The kids in my class can be trying at times but they really are sweet, lovable, little kids who I would take with me in a heartbeat. It’s awesome to be able to help teach children and show them even just a little bit of the world around them that they didn’t know about before. I’m proud of being called George, getting awkward hugs, and working with a wonderful group of women.
I’m thankful for a wonderful daycare. Because I work, I have two little boys that need care. It’s hard to trust someone else to give your children to. We talked to multiple places before we decided. I remember walking out of one home and just saying no. Dustin wanted to know why and I didn’t have any words to explain but I just knew it wasn’t right. Sheila has become more than just the daycare lady. We all have gained by expanding our family.
I am thankful for hope my future. I don’t know what will come and that makes things exciting. I have become who I am because of the experiences I’ve had and the people who have crossed my path. Not everything or everyone has been awesome. It’s taken awhile and some days I still have to remind myself that it’s okay to be that way. I can take what I know and move forward stronger and smarter. I can see things differently and be more than just okay with where I am and where I’m going.
I’m thankful for life’s basics. Too often we focus on what we don’t have but when you take a step back, we are pretty lucky in life. I have heat in the winter and air in the summer. I have a fridge with food inside. I have shoes to keep my feet safe. When all else fails, remember that there is toilet paper hanging in the bathroom and things just don’t seem quite as bad.
I know there is so much more that I could list to be thankful for, but for now I will just say thank you to it all.
I have my postcard from Shared Solutions congratulating me on taking Copaxone for one year. When I went through the mail pile and saw this, it made me have mixed emotions. Of course there is a part of me that should celebrate because it’s been a year that I’ve been on top of MS and doing something proactive for my poor brain. There is also the part that thinks, really, we’re celebrating the fact that I have swiss cheese for brains and have gotten to stab myself daily for a whole year now? Woo hoo!
The thing is that I haven’t really been taking the medicine for a whole year yet. You see I forgot to shoot up one day. The next day I thought about it but put it off. Then by the third day I had convinced myself that if I just don’t take the medicine, maybe I won’t have an issue. I’ll just wish the MS away (Yes I know that’s stupid logic but at the time it’s where I was.) It was a few weeks that I went on just pretending life was great.
Walgreens Specialty is on the ball though. They call each month to remind me that I need a new shipment of drugs. I saw them call a few times. I added a nice picture of one of my bruises to be their picture on my phone. I knew it was them. It’s hard to ignore after so many “missed” calls. I finally answered and let them send me a new box. I felt like I better actually restart taking it if I’m going to spend money getting new stuff.
That Monday morning when I started again, I picked my arm to poke. The boys were still asleep and the medicine was sitting on the dresser mocking me. I stopped what I was doing and got back on the horse. I then went back to getting ready by taking a big sip of coffee. I thought that my face felt a little funny but didn’t think a whole lot of it. I went into the bathroom to brush my teeth and look in the mirror to see what was going on. That’s when I noticed it was more than a little funny. My face started to swell and get even more red than usual. My chest hurt and I couldn’t breathe. I stood there in the bathroom trying to figure out what to do as I wheezed and sputtered. All I could think of was that I was going to die in the bathroom and I didn’t have pants on yet. That’s how people would remember me, pantsless. Thankfully a few minutes later things started to slowly get better. I sat in a chair trying to process and figure out what I was supposed to do next.
The boys started to wake up and I could get air in again so I got up and kept going. It wasn’t until I started to tell Dustin and the girls at work that I realized I should maybe go in and figure out what happened. It was halfway through Monday and although I felt like crap, I was technically fine so I just made an appointment for the morning. I guess when you mention not being able to breathe, they take that seriously and I got a panicked call that evening.
I survived all night though and went to my primary doctor bright and early in the morning. After talking and looking things up, we decided it was most likely the Copaxone I was allergic to and she told me in no uncertain terms to not take it until I heard otherwise. She was going to personally call the brain doc and figure this out. Only a few hours later I got a message asking to call her back. According the the brain doctor, I was fine and it was just something that happens. My primary instructed me that I was not to take the medicine without someone present and ready with my new epipen just in case. For some reason this response just wasn’t good enough for me. I wasn’t going to continue, for who knows how long, wondering if I’d tip over again because of the medicine meant to help. I decided to just call the brain doc myself to make sure he understood the magnitude of what happened.
His response, “Oh, well I’m guessing your face was puffy but not grossly swollen. And were you short of breath or completely couldn’t breathe?” I guess he forgot to mention that there is a side effect to the medicine that can cause shortness of breath, puffy and red face, and anxiety. He said I probably hit the vein in my arm and shot the medicine too fast. After mainlining the drug, it had a little party inside. Isn’t that awesome? The medicine I’m stabbing myself with to try and help can also cause me to tip over. I know every medicine commercial has a million possible side effects that all sound ridiculous but I guess you should actually pay attention to those.
We decided that I had to go into a health facility to restart taking the medicine. That way if I truly was allergic, they would be able to prop me up to fix me quickly. It took a little while to bite the bullet but I did it. I shot my arm and am still standing. The brain doc says that the chances of this happening again are likely but other drug options are even tougher to handle. I don’t know if that is reassuring to not. As for now I have decided that I have to do something. I’m not going to just let my brain fall apart. I’m going to keep stabbing myself and do my best to actually do it every day. I’m also going to make sure I’m not home alone and that I know right where my pants are. I won’t go down without them next time!
The fun just never ends.
I’m excited that I’ve figured out how to share videos that I’ve taken on my phone. I thought I’d share a few now since they are fun.
This one is from awhile ago
http://www.youtube.com/watch?v=Jg26H8raN1I
Banana is a really hard word
http://www.youtube.com/watch?v=B9Y-bva6cLI
A little entertainment from my morning bus ride
http://www.youtube.com/watch?v=5q3xzvEotWU
It’s super fun to watch yourself in the camera
http://www.youtube.com/watch?v=J4eA1epny90
Eato can dance speedy
http://www.youtube.com/watch?v=SAkQ0Pv6O54
And he can dance tall
http://www.youtube.com/watch?v=PLhc9GH6p18
Pre-Party
Ceremony
Temple
Lunch
Reception
Trip Home-Mostly Niagara Falls
