So, as some have surmised, there is indeed a lot on my plate and it is more than food :-). A few new updates. First, I have a new ride. Last Friday, I came into work complaining about my walker. I received that walker at the hospital and because it was was a holiday week, the nurses were scrambling to get it at the last minute. In fact, I had to wait 2 hours for it to arrive before I checked out the hospital and if it hadn't been for a very determined nurse, it might have taken longer. But, it really did not work well for traveling around outside, which is mainly where I use it. When I'm in the office, I make the effort to walk without it. Our office is L shaped and there are plenty of walls for me to lean or grab on to if I feel my balance falter. But, out on the downtown streets is a different story and since the heat exacerbates the muscle tightness, it can become exceedingly challenging to walk as the numbness tends to intensify when the banding or tightness starts.
The first walker only had 2 wheels and it was to lightweight for the patchwork quilt of sidewalks that makes up my trek to the bus station. I found a nice cherry red one on amazon with wonderful reviews and listed by consumer reports as being the best walker out there. My boss walked up behind me, layed the company credit card on my desk, and said "you're gonna get your new wheels and the company is going to pay for it." (things that make these eyes water with gratitude). It arrived yesterday and one the partners in the firm put my new wheels together. Didn't even once look at the instructions! LOL. I think I heard something like, "I don't need no stinkin' instructions!" He did a wonderful job and I love it. We set the handles a little higher so it will allow me to look up and keep my posture straight. I already attached my basket and my little bell. But, I'm thinkin' I might put some flame decals on it just to add some "coolness factor"
The Pharmaceutical Company called yesterday to explain things and get me set up. So here's what I know so far.
-This medication has been around since March of 2013
-If the insurance doesn't cover it, the pharmaceutical company will. If the insurance company DOES cover it, the pharmaceutical company will help cover whatever they don't.
-My doctor put me on the 'quickstart' program so hopefully I will receive and be able to start the meds in approximately 2-3 weeks.
-I will start with a low dosage that will be titrated up
-most common side effects are flushing and nausea/and or vomiting (however, the stomach upset is supposed to subside after about 6 weeks)
I can tell ya right now I'm not enthusiastic about the nausea/vomiting part. At least with chemo they give you anti-nausea drugs. They're not offering that with this drug. I am NOT a stress eater. When I got anxious in my early twenties, it became challenging for me to eat and when it was really bad, it was difficult to keep anything down (including water). And, sometimes I was known to forego eating for fear I wasn't going to keep it down.
When the lady at the pharmaceutical elaborated on "stomach upset", I chuckled and said, "well, I was wondering what stomach upset meant...like, are we talkin' really bad gas or wanting to hug the toilet." We both laughed and I said, "well, I guess I'll need to carry around some ginger ale for a bit."
But, at least I know and there are a few things I can do to help me prepare while my body adjusts. 1) whenever this stuff arrives, I'll start it on a Friday and stay home from work. That way, I'll have 3 days at home to see how my system deals with it and then plan accordingly from there. 2) I'm keeping in mind it won't last forever, my system will inevitably adjust. 3) If the nausea impacts my ability to eat and/or want to move around much, I can cut my exercise back to 30 minutes at a time instead of the usual hour or more. Perhaps, I can separate the cardio from the strength training days. That way, I'm getting my minimum movement in, but not trying to over do it when I might be inclined to hug a bed or a toilet than weights. 4) If the nausea is not mild, try to incorporate some "tummy settlers" into my WOE like almonds, maybe tea with honey, applesauce, soup, etc...
One of the things I also accomplished was downloading the tectrack app on my Iphone so I will be able to track my dosages and lab test dates. Inevitably so will they. The app will even set reminders. This drug is not a clinical trial at this point, but it's impact and effect is still being studied and since they're so willing to make sure it's paid for, I'm willing to do my part if it helps future MS patients. So far it's got a good track record for cutting MS relapses back by approximately 40-50%. That's not shabby at all!
In addition, I joined the Northwest chapter of the Multiple sclerosis society, watched their introductory video, and signed up for their "knowledge is power" seminar. Hey, any little bit of info helps, right? Probably, the only issue I have with their intro video is tends to speak to those MS folks that either haven't displayed any symptoms yet, or don't have any lasting damage to their spinal chords. It's great to teach those with MS that have no symptoms how to deal with the uncertainty of the disease, because the uncertainty is definitely disconcerting. But, there are those of us where movement is not easy and to some degree will always come with some discomfort and pain and even safety issues.There's only one other person with MS I know personally that has lack of sensation like mine right now. At one point, he apparently injured a knee and by the time he got to the doctor, they ended up telling him the knee he thought he hurt was fine, but the knee he had been walking on was the one that had actually been injured, which of course was made worse because he continued to walk on it.
I readily relate, there are times I see my ankle wanting to twist, but I can't really feel it and it occurs to me if I sprained or twisted my ankle, I might not even know until it was too late. Thus, the importance of having a walker to begin with. Personally, it might be nice to hear from other folks in my predicament that have symptoms displaying a certain amount of damage progression.
Regarding my WOE, I am up 3 lbs in water weight and weight in at 189.2 this a.m. I did do some splurging this weekend, I won't lie, but because I bank calories (which, yes you can do), I'm still under my caloric average. But, I confess I've been lacking on my water intake, and that is a no no, especially if I'm ingesting things (like the extra glass of wine) that are going to make a person retain water. In addition, pain, inflammation, and being out in the sun are sure fire ways of filling up this body's aquifer. I'm already on my second liter of water today and I've only gone pee twice. So, yeaaah I'm thinkin' we're a tad dehydrated. I've got another 2 liters to go so hopefully between today and tomorrow, we can get some of the water weight back off and get me appropriately hydrated.
Today is the beginning of my 2 day workout cycle. I've had 2 full days of complete rest so hopefully, muscles, joints, and abs will be good to go! I think I'll squeeze in another cup of coffee, though...lol
Have a wonderful day, everyone!
