I have worked hard on my health. for the last seven years, I have tried hard to not let Multiple Sclerosis kick my butt. Lot’s of ups and downs, it has not been easy. I have been on my forth … maybe fifth disease modifying drug. I have learned how to inject incredibly expensive medication into my stomach, legs and arms. Been hooked up to a chemotherapy machine for hours to have life pumped back into me. Taken countless pills and therapies. It has not been easy, lots of side effects, doctor appointments and heartbreak. The current med has been OK. I needed a MRI to see how it was working. We’ll get back to this in a moment.
After some of the changes in life during the last year, the next path for me was weight loss surgery. Being a fluffy girl, losing weight was not just for me and my health. it is for my husband, our future and for love. I have worked hard for the last eight months, with all kinds of appointments. With psychologist, specialist and more. Sweet, husband has been by my side since the beginning, and this was one more thing he supported me in.
The hubby and I head to another weight loss management class, and everyone starts congratulating me. I have no idea why, I ask several people and they just smile. FINALLY one of the coordinator tells me. I got the insurance pre-approval! WOOHOO!! One more step, just that much closer!! Next day, I get the phone call. The surgeon would be calling me to schedule the surgery!!
January 6Th, 2015!!!
I am beyond excited. The perfect way to start the new year. Life changing, this and so much more. Shock is still setting in, because I just feel like someone should pinch me. I keep thinking back to that first meeting about the surgery and everything, and I was telling another woman that six months was a really long time to wait for the surgery. She told me that why wouldn’t you? Six months will pass either way, do you want to be there, regretting that you didn’t start then? It made a huge impact. I think about that conversation daily.
AND HERE I AM!!
Can’t say it was easy, but it wasn’t hard either. Just committed. Went to the appointments, saw who I needed to see and ate how I should have been all along. I can say that it was changed me in lots of ways, and I believe it’s for the better. PLUS during this process I have managed to lose some weight. Nearly 50 lbs. I am super proud of myself.
Makes me giggle, the way it all happened that day. How I found out. I just went shopping at Lane Bryant for some new work clothes and hit up a great sale. After buying the same size for as long as I can remember, I just grabbed and left. Went to the meeting, things changed for the better. Got home that night, and started trying on my new stuff and building outfits. To my surprise and dismay, most of those new clothes are TOO BIG!! Made me smile. The few things that kinda fit were still a little loose. Another smile.
I bagged most of my splunder back up, and returned it. Took my husband to a movie for his birthday instead. He didn’t complain. It was a great way to end a great day.
Back to the MRI. I know the progression of this story is bazaar, but roll with it. While at the movies, I had a missed call from my doctor. Not something you expect on a Saturday night. Tried to call him back and had no luck. I spent the rest of the weekend thinking. Not always a good thing. My imagination is wild.
Monday morning he finally calls back. We need to change your meds. This one is not working. Your scan shows active lesions, as well as some growing ones. There is even a new one, within the last six weeks. We will go back to your old med, the pill one. I don’t think you were on it long enough. If that doesn’t work, we will do the other. The one you like.
I have been sitting and thinking, again not a good thing. Of that last med. I didn’t like it at all. Beside all of the stomach aches, it was bad. My hair fell out by the hand fulls, daily. OHH and the flushing. After taking my med, within half an hour it was horrible. I would turn bright red. My skin was on fire. Like a horrible sunburn. Hurt to touch. It would take about 45 minutes to go away, and then I would start to peel. I felt like a lizard. I did it for six months, and it was horrible. I had to pre medicate. Take Benedryl and aspirin. Pepto-bismol and yogurt. Sometimes it worked, most it did not. Because of these, I stopped.
Again, I am not looking forward to taking this one again.
Confusion. I have been so proud of myself, working hard to get this far. BUT no matter how hard I have worked, there is not much I can do to stop the MS. I hate that. I hate that no matter how hard I try to not let it define me, it’s what takes over. I try to be happy, but I am so sad at the same time. I am too young to be so broken. I know that I am not dead yet, but some days I feel like I should be. I don’t like to think that way. My life is different now, not over. I am strong, smart and loved.
Disability is not what I want. TOO LATE.
I don’t want to be a downer. I keep myself going when I think about a lovely man who made the best tartar sauce I have ever had, a beautiful voice and the amazing gift of playing the piano along with so many more things. He works, volunteers and mentors. What makes him so impressive is to see him. He was born without eyes. not blind, without eyes. And he does all of that and more. If he can, why can’t I?
SO, I sit here. Proud of myself for working so hard towards my future and health. Scared of my future health for a completely different reason. I feel incredibly lucky to have such a compassionate, caring, hardworking husband. A kind man, funny and smart. I tell him often to stop being so smart, I married him for arm candy. I think that is going to his head, he has a new haircut … a george clooney cut … a goatee and new shoes. I think he’s starting to stare at himself just a little too much … maybe 😉
I have 9 … 10 weeks until the surgery. I will keep you all up to date the best I can.
I am so excited!!