Yes! It has been a while! The longest break from blogging I have taken since I started blogging in 2010 right after my diagnosis! Well, I took a break for many reasons but let’s start with the most obvious; my new blog! I wanted a “fresh start” and since I started out on blogger, a free blogging website, I thought I would try the more “professional” blogging platform WordPress. You probably won’t notice many differences at first because I tried to make this blog look like what my old blog looked like which was surprisingly more difficult than I thought it would be – who would have thought? Maybe this is just too new for me but I don’t know, it’s up. So let’s do some catching up.
First of all, yes, this new blog was supposed to launch on January 1st of 2016. I had “big plans” for what I wanted to have ready to publish upon launching but as most of you are familiar with, the ups and downs of Multiple Sclerosis gave me an unexpected rough month and I just could not get myself to stare at a computer screen and try to learn a new platform with my current vision and fatigue. Trying to read the many lines of HTML felt like those images you always see on Facebook with a bunch of “I’s” and you have to find the “L”. So here I am 1 month later; better late than never right? This blog is REALLY barebones right now compared to what I had planned but it will just have to slowly come together as I slowly feel better.
OK, so what did you miss while I was being a ghost? Well, a lot of nothing honestly. At least that is what it has felt like… Let’s rewind just a bit before I “stepped away”; On September 21, 2015, I started day 1 of 5 of Lemtrada. The actual infusions went really smooth, I did have some flushing (reddening of the skin) but turns out that is completely normal and they did not even have to stop my infusion like they did. The following week was not really bad at all (from what I remember) but I was probably still feeling the benefits of the Solu-Medrol (IV steroids). The following couple of weeks is when it really started to suck; nausea!
I should say really quick, there was probably a lot more stuff I am leaving out but this is what stands out to me so this is what I am including in the “cliff notes”. I wrote down more details on my old blog which you can find by clicking H E R E
I remember thinking that if this is how bad nausea is with a very small and short dose of a chemo agent then if I ever get cancer forget it! No chemo! I mean not really but you get it. All the nausea medications they gave me, all the over the counter meds I picked up, they took the edge off the edge of my nausea at best! Luckily I was overly prepared; while getting ready for this treatment I picked up a medical marijuana card (I live in California) and bought an oil extract. I grew up around potheads in school, customers at work, everyone in that part of town it seemed was smoking it and so, I grew to hate those people and I especially hated the smell so I already had a bias against it. But I was nervous about the Lemtrada side effects and thought I would give an oil (I refused to smoke) a try if I had to because hey, if it works it works. Well after none of those pills really worked I put a small drop of that oil in a gel capsule, popped it as I was starting to feel like spewing my guts out and a little over an hour later it was gone. I mean gone, 100% gone, not a trace of nausea! I was able to go about my day and eat without forcing myself to. No wonder cancer patients use this stuff! I had taken it pretty late in the day one time and I slept like a comatose baby, no insomnia! And the 2 to 3 bathroom breaks I usually have to take at night? Nope, it seemed to put an end to the urgency I had grown so used to. Wow, maybe there was something to this stuff after all? All I know is dealing with the side effects of Lemtrada without that small drop of oil would have been hell and remember, this is coming from someone who was a total skeptic, someone who would have never tried this stuff a year prior. “Sure they feel better, it’s easier to tolerate anything when you are high” but that was not the case. So that turned me into a total supporter of marijuana legalization.
As the months went on the nausea went away and so did the minor rash on my arms, stomach, hips and back. Things were slowly getting better as far as the side effects but I was still walking with a cane and dealing with horrible vision and vertigo (oscillopsia and some sort of vestibular dysfunction). Once month 3 came around though, I was hit with a level of fatigue I could have never imagined. I still can’t explain it, I just know it makes the fatigue I had before Lemtrada seem like a joke! I wake up at 6 and by noon I am just done for the day and then around 8 or 9 at night I am crawling into bed ready to die…
Now this whole time I was having little mental breakdowns, not just because of all the MS and Lemtrada stuff but mainly stuff in my personal life that was only exacerbated by the MS stuff. I finally had an “I’ve had enough moment” and started trying to get some control of my life back. I started doing light exercises and stretching. Not just physical exercises but balance exercises and other things like vestibular exercises. It was rough but I am now almost at month 5 and walking without a cane again able to do a lot more stuff (like basic chores) around the house.
So my two biggest hindrances in life right now are my vision and fatigue. I still have my issues with depression and motivation but being able to do a little more helps. I am currently trying to get a new prescription for Ritalin as I had no issues on it in the past, it worked like a charm! Provigil (modafinal) gave me no energy but horrible insomnia and Nuvigil (armodafinil) made me feel kind of jittery on a good day and gave me a horrible headache on a typical day… As far as vision goes, I went to my optometrist the other day and wow, my current prescription is so not good. I now need a much heavier prescription and when I was looking through that big device that allowed my optometrist to find the right prescription everything became so clear! Crisp! It’s funny because I thought that how I see things right now, as far as clarity, was normal. I could not even imagine sharper vision, but in reality? My current vision is horrible! So I am still waiting for my new glasses to be done and I can only wonder if the horrid vision I had before Lemtrada (oscillopsia) has actually since healed; what if it has just been the fact that I am now walking around with the wrong prescription that has caused me to think my vision was not getting better? Like the oscillopsia healed just as my prescription changed so I never noticed the improvement? I think that is a stretch but who knows? The only way to find out is to get my new glasses, wear them for a while and see how I feel. I can’t wait!
So, for now, I still may not be as active online as I want to be but I will definitely be blogging on a regular basis whenever I can and then once I get my new glasses and something for fatigue I can only imagine the kind of work I will be doing! I know I still have a lot of work to do on this blog but right now it’s just not realistic; I am so hoping that it will become a piece of cake after a couple of “upgrades” in my life (glasses and something for my fatigue/cognitive issues). We will see! Thanks for being patient with me and thank you all who donated to help get this new blog off the ground! Take care!