My LATEST MS Episodes (with Video)

FIRST of all, let me tell you: I want to curl up on the couch right now and take a long nap. This cloudy weather messes with my sleep-o-meter! But I won't... so I can write this. Obviously. Of course, I have my little sweetheart, JoJo, my sleepy sidekick who has been with me (well, ON me technically) and she's so warm so it makes it that much harder not to ....z.zzzz......

Speaking of JoJo, she's going on almost 6 years old, and she is getting CRANKY! The funny thing is, as long as you aren't the UPS driver or the cable installer, she doesn't have a problem with you. Unless YOU are trying to have ANYTHING to do with me, WHILE I'M ASLEEP (hence her "protectiveness" in the picture below and the tiny tooth indentions that are currently on Scott's right hand).

Yep, the other day Scott was going to cover me up with a blanket while I was laying on the bed, but as he walked closer, JoJo let out her absolutely MENACING "warning" growl. Of course he ignored her, and as he reached for me, eleven pounds of pure JAWS came out from underneath her own coccoon of covers and nipped his hand. NOBODY messes with her Mama while she sleeps... NOT EVEN DADDY.

This is her, "If you even THINK about touching MY MAMA, you're dead!" look.

You can guarantee that if I'm asleep, she's definitely either sitting on my shoulder or hiding underneath the covers. Without a doubt, nearby.

From 2006

To 2009

2010

2011

And of course, she's a lake dog... As long as she has her clean bottled water, she's good! haha ! (just kidding!)

That's my sweet girl...

Anyhoo... In my recent past posts, I've mentioned that I've felt pretty rotten lately. Actually, rotten is putting it mildly. Honestly, I was pretty much the sickest I've ever been, and I couldn't make anything take away the worst symptom of all: the SPINNING room.

Every time I opened my eyes, the room would spin. And spin. And then spin the other way. For over FOUR weeks! It was like getting off a roller coaster all day long.

And all of those tricks I've heard that you're supposed to try when you're drunk... they don't even work. Don't act like you don't know which tricks I'm talking about: Lay in bed and keep one foot flat on the floor, try to reverse the spinning, Tylenol constantly, eat bread... All those weird things. No relief.

You know what it was? I was having withdrawals from one of my going off one of my medications. (I guess that means I'm addicted to it then? Weird to think that.)

It was Adderall, which I take for Hypersomnia and Chronic Fatique, or to keep me awake. I used to take Nuvigil, but it gives me this awful pressure in the back of my head that lingers for a while after I've quit taking the medicine. AND the BIGGEST downside was that it makes birth control ineffective... and we do not need any little Mini-Chelsea's or Mini- Scotty's running around right now. Izzy and Evan wouldn't complain, but I have to get myself regulated and consistent and then have some Chelsea and Scott time before we plan for that journey.

Anyway, the pharmaceutical companies are having issues producing the type of Adderall that I was taking, but that wasn't the beginning of the problem. The problem started because Miss Priss (me) let her prescription run out, and my doctor has to mail the prescription to me because it is a controlled medication. And considering that his office is in Cullman, Alabama, which is 3 and a half hours away, it's easier to mail it than to hop in the car and trek up there.

So, on that Monday (I can't remember the date, but it was several weeks ago) I took my last pill and realized that I was out. Completely out. So I started to freak out, and flash light in hand, I was doing what I like to call the "Drug Addict Scramble" where I frantically scrounge around flat on the floor, shining the light underneath the fridge and cabinets and under the bed trying to make sure I didn't drop a random pill somewhere. And needless to day, unfortunately I had been very careful and I found no extra meds hiding anywhere.

So on..... Scott called my doctor's office first thing Monday morning and they said they would mail out my prescription right away. Tuesday came, mail came, no prescriptions. By Wednesday morning, I was pretty much at the hallucinating state where I was sick as a DAWG.... in the bed, throwing up... and so on. And after the mail came, no meds. I was too sick to even walk to the mailbox, and by the time Scott got home to check the mailbox to see if it had come, the doctors office was closed for the day.

Thursday morning, he was back on the phone, and they said they hadn't mailed the prescription yet, but they would get it in the mail as soon as possible. WHAT?!?!?!  At this point, I was taking Phenergan, because I was so nauseous, and that would actually knock me completely out. I finally asked Scott to call the doctors office back ( I couldn't really talk on the phone well) and ask them to call me in my Nuvugil, the sleep medicine I mentioned earlier. I didn't care what kind of head pressure I had, if they would just call me in the medicine, I would deal with the pain later. And luckily, they mailed the prescription that day and they also called in my Nuvigil to hold me over until I could get the Adderall filled.

Well, Friday the prescription for Adderall arrived in the mail, and Scott had it at the pharmacy first thing, only to find out that not only did the pharmacy not have any of the kind I needed in stock, but NO pharmacies had it in stock, and they wouldn't be receiving anymore until maybe JANUARY, if they even started making it again at all. Talk about rock bottom!!

So, at this point, it was Friday and the weekend was about to start and while I was awake, the pressure in my head was excruciating! Scott got back on the phone with the doctors office, and asked them if they could call me in a steroid to stimulate me and if there was anything equivalent to Adderall that they could call me in that would not have to be mailed. And luckily the nurse gave me the steroid with no problem and said there was a medicine that was almost the same as Adderall that did not require a mail in, and she called it in for me.

What we didn't realize is this: MOST people take Adderall to help them focus. They don't specifically take Adderall to keep them awake. I take Adderall, because it has a stimulant in it that keeps me awake AND helps me focus. Well, when the nurse looked at the medicine and saw Adderall, she immediately thought I was taking it to focus, so she did indeed call me in another similar medication that was designed to help people focus and help brain function. But, the new medication did NOT have a stimulant in it, and we didn't know this. And we also didn't know that the stimulant was pretty much what keeps me normal and functioning. And so it began.

I took my medicine on time, every day, just like I had been. But every day I got more sick and more sick. And it was ALL cognitive! I couldn't even watch a movie without the subtitles on, and I was like a complete zombie. I wasn't happy, and I wasn't sad. I was just there. Then, as a result, my regular muscle relaxer, the same one that I have taken since MAY quit working to relax the muscles in my neck and it started to create what was called a brain fog. And a brain fog is putting it mildly.

Most of the time, I couldn't even hold my head up without having a neck pillow behind it, and then on top of that, I could hardly carry on a conversation. I was pretty good at faking it, like over Thanksgiving, but gosh I was so so sick. Everything was SO overwhelming, and I don't think I've cried that much in a while. I cried half the way to Thanksgiving lunch, because Scott said he was going to pack up some boxes in the house. Why? I have absolutely no idea.

I hated it, because we had the kids over Thanksgiving, and I was completely out of  it. I wasn't speaking like out of my head or anything, but I really wasn't speaking at all, and I slept a lot. I told Scott that I was in my own world, and it was so completely lonely there, because no one could see what was going on. It was literally all in my head. The pain in my neck and the back of my head was so bad that I told Scott that if a doctor had told me that there was a surgery to relieve the pain, but I only had a 25% chance of surviving the surgery, I would have had it in a heartbeat! That's how bad it was!

I finally went back to the doctor last Tuesday, and my neurologist caught the mistake immediately. Bad news is that I can't take the muscle relaxer I had been originally taking. I'm not sure why, but the cognitive fog it causes is just too much to handle. The good news is, Dr. LaGanke started me on another ADD stimulant to keep me awake. It's called Focalin, and not only does it keep me awake, but it also takes the anxious edgy feeling away that Adderall caused! So it's a win win win either way! He also gave me another muscle relaxer to take every day and my neck pain is completely gone. I've also had a lot of ups and downs and downs and downs with depression over the past few months due to the placement of my lesions and the MS in general. It's not that I'm sad, but more that it's completely out of my control, so he started me on Abilify, and so far it's awesome! The only problem I'm currently having is random headaches, like regular headaches on the top of my head (which is wierd to me), but thankfully I'm noticing a trend with the pain: lack of food. Before, when I was on the other medication, I could go a pretty good while without too much food and I was fine. With this new medication, I have to eat three meals a day or I'll get an awful migraine. If that's all I have to do... I'm fine with that! Actually, I had lost down to 92 pounds, skin and bones, and between the sickness and the steroids, I've gained 22 pounds back! I now weigh 114 and while I don't feel as "fit" I know that I am where I need to be. The steroids made me eat like everything in the house... literally!

I actually recorded a short clip one day when I was at home sick, and I was laying in the floor in such a huge amount of pain. I recorded it, because I wanted to be able to remember what it was like when it went away, just in case I needed to be reminded to not take the good times for granted. I've struggled with whether or not I was going to show it to anyone, but if I can figure out how to do it, I'll upload it to here. I've been honest with you from the beginning, and I guess I'll get a little more honest with you.

Let me remind you though: I was REALLY sick, so I look really bad, and I don't look like myself. I just don't want friends to watch it and get upset! I am so much better now, and more like my old self than I have been in a while! I'll tell you what... I'll share this one with you, and then tomorrow or the next day, I'll upload a better video of me now so you can get some good news too! (Excuse my hair! haha)

I figured it out, so here is the link!

Video of my WORST sick day (WARNING...I'm really upset, I'm better now!)

Talk to you later!!

Love you all,
Chel