have been so busy for a change and it’s wiping me out! There is so much I
wanted to blog about that I either forgot about or never got a chance to. So
let me try my best to catch everyone up on how life with MS has been on top of
trying to start a new life all together.
First of all, Tysabri number 18! On July
14th I had my first infusion of Tysabri in Colorado and it went
well. The nurses were nice, I didn’t have to get stabbed a bunch of times for
someone to get my IV catheter in, and aside from a lack of TV’s to pass the
time it was a nice little center. Although it is primarily used for cancer
patients I did briefly meet a lady (who was on her way out) who was also on
Tysabri; Number 60 something! Wow that’s a lot! 5 years? Anyways, they drew
some blood before my infusion to run a CBC (complete blood count) which looking
at the results, includes a lot of what my SoCal neurologist checked for (but
not nearly as much) and since I got the results online instead of from a doctor
I had to (well, chose to in case something was off) look it all over myself.
Everything they checked for was within normal range and was pretty much the
same when compared to past blood tests so that is good.
different types of testing like the typical JCV ELISA blood test VS the JCV DNA
PCR CSF (cerebral spinal fluid) test and I still have a lot to learn but
it has been making me feel more comfortable and “in control” for lack of better
terms. I am trying to get to the point where I can look at my test results and
know exactly what all the numbers mean that way if I can show that I have a
clear understanding of it all it will be easier to say “Hey I would really like
“this” test for reasons X, Y, and Z”.
kit since I had to leave a lot of what I had behind. I already have pretty much
everything and more that the Red Cross recommends you put in a kit but I still
have a few more things I would like to have on hand but I will talk about that
in a later post.
So now, the job hunt! It’s been years
since I was last in this game and I’ll tell you what; I don’t miss it one bit.
I just want to be at the interview stage instead of the application stage. My
uncle has been helping me with a resume and we should be going over it this
weekend so once I have that ready to go I can finish up a lot of the
applications I started online. It’s weird because after all I have done in the
MS community these past few years it’s hard to go back to looking for a job
where I am on the bottom of the totem pole but at the same time, that’s kind of
what I want; a normal, steady job that will make me think of something besides
Multiple Sclerosis for once! A job where I can hopefully be social again! Then,
on the side, I will continue my MS work and maybe a bit of photography once I
have a car.
interview the other day with an employer that was nowhere near my first
choice (but I applied because I just want a job) because the shop is full of
glass and fragile merchandise which is not good for someone with MS due to
clumsiness. My reception was horrible so I felt like I was more focused on
finding a good spot to hear my interviewer than on actually hearing what she
said! So I was sure it didn’t go well and the next day that was confirmed by an
email that informed me (in a very professional and polite way) “thanks but no
thanks”. Oh well, it was practice and way more than I would have ever got in
So I am desperate to start working and
get off SSI. I had to go to the Social Security Office the other day to confirm
that I actually reside in the location that I said my new address was…
For whatever reason they could not do it over the phone so I had to go in, what
ever, it was a nice day out. After waiting an hour at the front of a line to
get into the building once it opened, I grabbed my ticket and sat down. It was
funny because where I lived it was like trying to get into an airport; empty
pockets, take off your belt, walk through a metal detector, get hand scanned or
even a pat down if the detector goes off, THEN you sit down. Not here.
The people who were waiting to be seen were all nice, no “ghetto” people
causing a scene you know? Even still, the security guard who opened the doors
was pretty rude to the elderly couple in front of me and the clerk I spoke to
immediately gave me attitude despite the fact that I was being super polite.
She was so rude and unwilling to hear what I had to say that I just signed what
I had to sign, went home, called the Social Security Administration, waited an
hour to be helped, and asked my questions there which were all politely
answered. So the DMV was really nice but the SS Admin? Not so much… Guess
someone missed her cup of morning coffee…
So yesterday I had a bit I wanted to get
done but the previous night I could not sleep thanks to a… “bad” dream. I woke
up and felt a tad nauseated but that went away after I showered and got ready
for my day. I went to the store to grab a few things and when I got back I
could feel a headache coming on. It didn’t feel like anything serious so I
didn’t take anything. I ate breakfast and by time I was done my headache was
getting much worse so I took some Tylenol and Ibuprofen but instead of it
calming down it got worse and I started feeling nauseated again. I covered my
head in ice and just laid on the floor until it had all melted. Wow, now light
hurt my head; I was getting a migraine… yay… Despite my not wanting to, I laid
down and watched a movie. By time it was done I felt much better! I got up to
grab some more water and then it hit me; dizziness. For a second I felt like I
was blacking out and than the headache rushed back into my head and my stomach
grew heavy. So I just sat back down skipping both lunch and dinner because I
felt so sick! What a waste of a day! I pretty much sat and laid down all day!
After a good night’s rest (thanks to some meds, ehem…) I feel all better
and put them all in plastic containers in the fridge. I measured/calculated all
the calories because I have lost so much weight lately and I need to put it
back on. I am well used to the elevation and it’s lack of oxygen but now I
really need to start rebuilding muscle so I am still trying to figure out what
I will be doing and how I will be doing it. I need to make sure I am not
burning more calories than I am taking in each day… fun…
but I am posting a lot more on my Facebook page (which you can find on the
right hand column of my blog) so if you don’t see a post for a while on my blog
check out my Facebook page to see what is keeping me busy!