Finally a Good DAY!!

Yesterday started out well, it started out good like most days do. I started the blog, then went outside for awhile to enjoy the sunshine while it was there. I did get a bit of the yard raked, which was a big high five moment for myself. I played with Kody for a bit and he seemed to love momma throwing sticks, and digging in my fresh leave piles. UGH! Silly dog, was fun though. There was no aches, no pains, no migraines today.

What I got instead was a bit of double vision, which staring at a computer screen for awhile reading will do. I made it through a few pages of jobs, and honestly didn't see anything new that I hadn't already applied to. A job will come I know it, I'll find one. Starting at the bottom of the totem pole at a construction company would be so awesome. I start back to school for my associates degree in CAD in a week, I'm excited! I would even be a janitor for them and work my way up. I have no problems at all proving I'd be an asset to the company. I'm really excited to learn Rev-it.

I filed my FAFSA, cleaned out some emails and did a few loads of laundry, so overall it was a very productive day for me. Best thing? I woke up today and I don't hurt, I feel like I can probably sneak a few things in today as well. I even made dinner last night, which standing in front of the stove, anyone with MS can tell you heat is not our friend, not one bit. I made a Cottage Pie (which is a Sheppard's pie only with ground beef). I mashed potatoes, and carrots, and I honestly wish I would have put nut meg in the carrots, I thought of that after I had put it all in the oven. So, it's on the list for next time. I should of put peas in it too...ooo... again on the list for next time.

After eating I went into my room, since it was the coolest place in the house and turned on the t.v. and watched some American Dad and Family Guy before finally laying down and going to sleep.

I hope I have more days like this, after this winter I think I earned them. It's just too bad it's a bit cloudy outside but who knows maybe they'll burn off and it will be another gorgeous sunny day in Anchorage...here's to hoping!

Today is a new day...

This past week was the worst. I had more bad days than good days. The bad days consisted of constant pain. My joints felt like they were being stretched to the max. My toes were constantly tweaking and cramping so bad that I actually was in tears trying to walk on them to get them to relax. I had a few days of migraine headaches that felt like my head was going to explode. I hid in my room with the curtains drawn and the blanket over my head. I didn’t know what to do. I had to push on with my job hunt, get my schooling lined up for this term among other things that needs to be done. I went through this the whole week, each day a repeat of the last. I felt like I was stuck in the movie Ground Hogs Day. I haven’t called my neurologist yet. I honestly don’t want to get him involved yet. I want to work through this on my own if I can. If it gets worse, then yes, I won’t have much of a choice.

Sunday was the best I felt, I probably pushed myself too far, but I got a lot done. I cleaned up my computer room from top to bottom. Got rid of a lot of clutter and felt like I had done something good. Then Monday rolled around. I felt fine when I got up, a bit sore from the constant stooping but I figured I could deal with soreness. WRONG, it was more than soreness, as the day went on the soreness turned into utter pain. It hurt to sit, it hurt to stand. Walking well lets not even talk about my stumbling attempts of walking.

I managed to do the dishes and cook dinner, which was before the pain progressed to the breaking point. After dinner is when the breaking point hit. Light was painful to even look at, I had a spell of vertigo, then a few dizzy spells and I knew I had to lie down. I wanted to sit and watch Defiance with my husband but I couldn’t even sit up without tears streaming down my face. I went into my dark cold room and lay down on the bed. I stared at the ceiling and watched it swirl around as another dizzy spell hit me. I finally broke down and got up to take some Motrin. I knew if I was in that much pain there was no way I was going to fall asleep.  When I came out of the room and my husband looked at me he knew I was having a bad day but managed to say, “Dear you’re a mess”… and me being in pain and not in a good mood said, “thanks Captain Obvious, I totally had no clue.” 

I got my glass of milk, popped my Motrin, shot my husband a glare then went back to my room. I had a few hot flashes, then cold flashes through out the night and slept like crap. But, today is a new day, and well I knew it was time to start documenting how I cope and deal with my MS. So far today, it hasn’t been too productive, but the pain is tolerable. I do have the lightning shooting down my spine when I look down which is a bit of a trippy feeling so I try not to look down. My eyes tend to want to go double vision, like now, so that’s telling me I probably need to take a break from straining them looking at a computer screen. We’ll see how the rest of the day goes, but I am thinking this will be a semi good day. I might just go outside and soak up some good ole vitamin D and play with my dogs for a while.

One thing I have learned this past week, DO NOT PUSH YOURSELF. If you do, you’ll pay for it in two-fold. Honestly, it’s not worth it. Do small projects at a time, take breaks, even if it’s just going outside for 20 minutes and reading a book or sitting in the sun. I know I’m going to. I have a lot of housework to catch up on, and a job to find. Both of which are priorities, and I will do them a little bit at a time. All I can say is today is turning out to be a good day.

The Discovery...

Living with MS isn’t easy anyone who tells you it is either doesn’t have it or is kidding himself or herself. There are good days and bad days it all depends on your own perspective of what a good day and what a bad day is. With MS, you have to take life as a day-to-day process. You can’t plan ahead and hope for the best, it doesn’t tend to work out well if you do. I decided it was time to start a blog on how I cope with MS and hopefully it will help others out there as well. Let me start at the beginning…

I was 31 at the time I was diagnosed with MS, was a full time student working hard on my Interior Design bachelors degree in an online setting. Anyone who says going to school online is easy is again fooling everyone. You have to work twice as hard and learn a lot of things on your own. I think this helps in all honesty. You will have a better understanding of the programs you are working with and tend to find things that the professors teaching the class haven’t even discussed doing. Ok, back on track, I had just finished a hand-drafting project and felt exhausted, so I took a nap. When I woke up, my right hand was completely numb. A bit panicked I called my mother, she’s a nurse, and asked her what I should do. She told me to call the doctor and make an appointment I might have pinched a nerve when I fell asleep.

So, I made an appointment for February 24^th to see my family doctor.  The numbness by then had manifested down the whole right side of my body as if a snake had wrapped around my arm and leg. Parts weren’t as numb or affected at all. After some X-Rays, they found nothing. So she referred me on to the Spine clinic to see if they could help me out. Two weeks passed until the doctor could see me, at that point the numbness was more a nuisance. The doctor did some typical tests, ran some spiky thing over my hand and checked to see if there was any strength in it. Which I’ll be honest, I was lucky if I could hold anything at all with my right hand, (thankfully I am a lefty for most things). He decided then that we should do an MRI to see what exactly was going on. I said, “OK, might as well”. I’m not a huge fan of being squished inside a machine with lots of loud noises, but I knew it was something that had to be done. After an hour or so, they decided to do some contrasting to see if they could spot something. I know they had, because an hour had already passed and they didn’t want to alarm me, but I knew something wasn’t right.  After another two hours in the machine, they finally pulled me out and let me get my clothes back on. The doctor and I went back to his office to talk about the possible diagnosis. He had found some spots that made him a bit uncomfortable on my brain and at C5. He suspected it to be MS, and had already called a neurologist and made an appointment with him before they had me out of the MRI. The doctor told me how hard it was to get into a neurologist, it usually took months to get in, but he pulled some strings and got me in there in a few days time.

I thanked him profusely and walked out of his office, a bit numb and confused. Not, about what he had told me but HOW I got MS exactly. Walking into the lobby with my MRI disk in hand and looking at my husband and mom as I walked out I felt like a zombie. This couldn’t be real it was just a bad dream and I would wake up and laugh at myself later on. But, it wasn’t it was real. I had no idea if it was MS brain cancer had already taken the lives of two people in my family on my dad’s side. So, his mind instantly went to the worst. We had no idea what those spots were at the time. I started to do some research on MS when I got home and I ended up crying by the end of the night. I was scared, I didn’t know if I was going to ever get feeling back in my hand again, if I was ever going to be able to bowl again. The next morning I had called my school advisor and told her what was going on. She had suggested I take the term off, figure out what was wrong then I could come back in a better frame of mind. I agreed with her, got the paperwork together and sent it in. At least that was one less thing I had to stress about.

The night before my appointment with my neurologist, I couldn’t sleep, a lot of what if’s played in my mind. I finally had enough, pulled out a book to try and calm myself down and fell asleep. In the morning, I went over my paperwork for the doctor for the fifth or sixth time, (I kind of lost count) to make sure I had everything filled in properly and stuffed it back into the envelope. I had dreaded this appointment but at the same time it would be a relief to know what was wrong with me. I showed up 30 minutes early to my appointment, handed in all my paperwork and my disk in case he needed a copy of it as well.  The wait in the waiting room felt like an eternity when actually it was about 5 minutes before they called me back. They took my weight, blood pressure and temperature. When the technician asked why I was there to see the doctor, the fear worked its way back in. I told him about the numbness, the loss of balance and the fatigue. He notated it all on the file then said the doctor would be in to see me in a few minutes and left. I sat in that room and looked around at the posters and wondered what was in store for me, how I was going to react to all of this.

Then the doctor walked in. He’s quite a bit taller than me and I stood up and shook his hand quiet awkwardly I might add since my right hand is numb. He introduced himself, and then went to work. He had me squeeze his thumb, and then did a few other tests. I’ll admit even now doing the heel to toe walk is difficult, too impossible. I stumbled a bit like a drunk through it but I gave it my best. After we were done, I sat down and waited to hear his news, he confirmed, I have MS. We went over the MRI and he pointed out the one at C5, he was concerned about this one since it was so low, and said that there were many medicine options out there for me to use. He told me about the A, B, C’s of the medicines, and I opted for Copaxone. Yes, I have to poke myself daily and there are really no side effects minus the omg pain at the injection site for ten minutes but that’s tolerable. He also told me I have RRMS, which is remitting relapse MS. He said this was the best one to have, if I had to have any. He also suggested I have the solu-medrol treatment. That treatment is a three day, one hour IV transfusion. It would help with my exacerbations and hopefully return the feeling into my right hand.

I got my first treatment that day, and then had two more over the next two days. I won’t kid you, this stuff made me feel like superman on speed. I got so much stuff done, even with a numb thumb. The feeling did come back in my hand a few weeks later and I was ecstatic. I could switch back to my normal bowling equipment and bowl like I used to. My life changed on March 19,2009 that is the day I found out I had MS.

I’m writing this blog to not only document the good days, but also the bad and try to cope with my own feelings with dealing with this disease. There is no cure for MS, yet, only preventative measures and drugs to help lessen the effects of relapses and even keep them at bay. Since I was diagnosed I’ve had three relapses in a span of three years. That’s honestly not too bad. I didn’t have any in 2012, which to me is a huge milestone. I got hit pretty hard this winter, I had a relapse in March, and honestly I think I’m either still recovering or it’s not going away, but I’m going to fight it one way or another. I might have MS, but it doesn’t have me.