This weekend has been bad.
It takes me back five years ago when my life changed forever. 2007 was a great year! I had been at a great job for over a year, was going on the second year in my new house, had just bought a BRAND NEW CAR and my boyfriend of five years was amazing! Thing were getting really serious, and I was sure a wedding was around the corner.
July 17, after a rough night at work, I head home. I figured that a 13 hour shift was to blame, and I was just worn out. I crawl into bed and call my boss. Sick, can’t make shift tonight. Thanks. Sleeping for a little bit, but it’s just too hot. Thankfully my mom could bring some meds on her way home. For a week, I was misrable. Too hot! Too cold! Chest felt like someone was sitting on it, my legs were weak and my balance was non-existant. I didn’t eat or drink anything. I walked (as best as I could) into the bathroom, and noticed my face wasn’t looking right. Called my brother, and we head to the ER. After several hours, EKG’s and all, the doctor informs me that I have Bell’s Palsy.
He can’t explain it. Not sure what causes it or where it comes from.
After a few more visits with my doctor, meds and referals, I end up at Dr Grey’s office. Hours later, he walks in and simply said “Looks like MS”.” I am sent to get an MRI and off to the Neurologist. In two months. So, I sit and wait. Barely able to function. The heat has taking every ounce of anything I could of had. I lost weight, didn’t leave the house anymore, my hair was a mess. I hadn’t driven my new car in months. My family had stepped in, and helped me stay afloat. The boyfriend, not so much.
SO, September 10th rolls around, and I go to my appointment. Another great doctor, and he shows me the MRI images and says, “It’s MS.”
I am gonna fast forward through all the details about attend clinics, more doctor visits and learning that every medication available for Multiple Sclerosis is given via needle. Did I mention I hated needles? My options:
1. an self injection once a week into my thigh muscle.
2. an self injection three times a week under the skin of my stomach.
3. another self injection, this one every other day, in my stomach.
4. last self injection, every day, area of your choice.
After talking it over with my Neuro, we decide to go with Rebif. It’s three times a week, and it will be divided up between my stomach, thighs and upper arms. FUN. First, he thinks a round of steriods might help with this flare up. Great, more needles. I head to the hospital, and the woman in the infusion clinic finds a vein the first try, didn’t feel it. This port will stay in for four days, and at the end of this adventure with a needle in my arm, I purpose to her. She’s an angel!
After the nurse shows me how and the best way to self medicate, it’s a new adventure! Not a fun one, a polka dotted painful one. I have red spots all over me from site reactions, and it’s not cute.
Did I mention at this point, my boyfriend had been a show for nearly two months?
I tell you this to give you a window into my life at this point. Can’t see, barely walk. Polka dotted and pale. Not a good look on anyone. Super glad the heat has disappeared, and naive little me, thinking the worst was behind me.
Let’s jump ahead a month or so, boyfriend dumping me and Mom moving in. Yea! (Insert sarcasm) Feeling a little better, some energy and eyes doing much better. Then it gets COLD. 26 degrees and falling in the early morn. All of a sudden it’s a new attack.
Do you know that feeling when your hands or feet are cold, and you put them in hot water? The stinging, burning pain that is mild yet horrible at the same time? My legs felt like that all the time. The severity varied from each change in tempature. Next, if you have ever been on an old, wooden roller coaster? How it shakes your body so hard, you are afraid your teeth will pop out, taking each corner like nothing. Throwing you around like a rag doll, ups and downs making your stomach flip? I felt like that, inside my skin. I wasn’t shaking or moving at all, yet I felt like I was spinning in a dryer full of tennis shoes.
For someone that couldn’t handle heat, I now couldn’t be cold. HUH?!
The winter following that horrible summer was beyond what anyone should have to deal with. I know this post is a little all ove the place, just hold on for one more minute. I’ll be there soon. All this back story is there so you can know what is going on. Life is fantastic now. Found an MS Drug that works (more on that in another post), married the man of my dreams (again, for another post), and life is good. But this weekend, it’s starting to get colder in the evenings. I am glad to see it, but for some reason it’s back. The stinging in the legs and the roller coaster ride that is MS.
It scares the hell out of me.
Simply put, it took a lot of time, medication and tears to get me through the last batch. It was for just two short months, and seemed like years. It was horrible, and it’s starting again. NOW, I don’t know what’s going on. I could have another infection that’s causing things to go haywire, but it’s more than I feel like I want to handle. The thing is, I don’t have an option. Not with anything in this adventure of MS. Just hold on.