Back to California; A Possible Relapse

For the last month or so I have been noticing some very
settle <—-(SUBTLE, teacher caught my grammar error lol) but alarming symptoms. I have ignored them and pushed through them as
long as I could but I can’t do that anymore. It is time to properly address
them since I can’t do that here in Colorado where the doctors I see are… they
are a bunch of clowns. When I think I am relapsing they drag their feet and
then all they have to offer is Solu-Medrol. A drug that I no longer respond to
and a drug that should not be taken with Tysabri because Solu-Medrol is an
immunosuppressive drug. Add the fact that I am JC positive? That is just a
finely wrapped invitation for PML; “come on in when ever you see fit”. I asked
for Acthar and I was told “I have never seen any evidence that it helps so I
don’t want to charge the insurance company so much money for something that
does nothing”.
Oh so your in bed with the insurance companies huh? Quid pro
quo? If you write too many prescriptions that cost them too much money you
might not get that little vacation you and your wife want so bad huh? Well
guess what, it works, I can vouch for that, I can also give you a stack of
abstracts and paperwork proving they do while mitigating the chances of
developing PML. Oh hey, did you know Acthar was what they gave MS patients
before Prednisone and Solu-Medrol? Acthar is a hormone called ACTH (ACTHar, get
it?) and our bodies produce this hormone to stimulate the production of
cortisol, a NATURAL steroid. But when the cheap synthetic stuff came into the picture
no longer did anyone want to prescribe $60,000 worth of medication when you can
do a 5 day coarse of steroids at $50 a day.
These doctors run no tests, refuse to do spinal taps to run
tests on my CSF (cerebral spinal fluid), and never respond to my inquiries.
It’s a fight just to get them to run a CBC (complete blood count) let alone all
the necessary testing to watch for the PML virus. They do the bare minimum;
only what the law requires them to do. I need a doctor who knows what he is
doing, who actually knows what does and doesn’t work for MS, who cares more
about his patients than what some drug rep wants. I need someone who I trust
with my life and is ACTIVE in my
health. That is not here.
Something else I have in California that I do not have here?
A sturdy support system. When I am
feeling ill, too weak to help myself, or I don’t have a car, I have no one to
help me here but back in California I do. In California I have a friend who no
matter how bad my day may be, seeing her and just playing cards makes me forget
about all that is wrong; she makes me
. I have my cats and dogs, yes, I miss them. My parents? They have
always been there for me even when I am 1,100 miles away; they do what they
can. Yes it is hot but everything has a price. I am willing to pay that price
to have all that back. I had to move over a thousand miles away to see what I
was taking for granted. I wish I didn’t have to learn that way but I learned a
lot about people, life, and above all else; myself. It was a great experience
but I look forward to returning “home”. Home
is where the heart is
and that’s where I am heading.
If all goes according to plan I will be driving back with
all my stuff in about a week. I was put on a leave of absence at work so when I
am ready I can call and one of my managers is going to try to get me in a
“store” over here. Transfer. If I can get my car fixed I will be back in
California with a car and a job. Even now my car runs and I can drive it but I
need to put a new engine in and it looks like I may have someone to help me with that as I am not sure how long
this one will last. I am not 100% sure where I will be staying but until then I
will be back with my parents.
As much as I love it here and as much as I will miss the
weather and dread the heat in California, I am excited to return and be with
the people I care about. I took so much for granted and I see that now. I just
hope that certain people in my life will be able to see that in me as well. I
know what I want in life now. I had to loose it to see it…
So last night was my last night at work. Now I am just
getting ready for the move back and planning how and what I will do once I am
back in town. My first order of business is to get back in with my neurologist
ASAP. If all is well then I will call in about transferring my job. Somewhere
in there I have to secure a new place to live because I can’t barge back into
my parent’s house after all this time and let’s face it, I don’t really want to
(no offense) but a bird that leaves the nest is not always meant to return.
Just visit haha.

Now I get to spend the rest of the holiday season with the
people I really want to. So yeah, I am happy. I am excited for that. I am just
thinking “out loud” so over the next week hopefully I can make up for all the
blogging I have not been doing.

6 thoughts on “Back to California; A Possible Relapse

  • November 29, 2014 at 3:01 pm

    Safe travels, take alot of pictures and keep blogging

  • November 29, 2014 at 3:36 pm

    I commend you for doing what most people want to do, but never do. That is going outside their comfort zone and trying to live differently. To move over 1000 miles from my support (family and friends) would be unimaginable . Not to mention competent medical care.
    I hope returning to a place with a little less stress makes for a non-relapse. Having the stress of going to work everyday with physical and mental limitations in order to keep a roof over your head is a heavy weight.
    Looking forward to the continuing insight from your blog.


  • November 29, 2014 at 10:36 pm

    I think you should go,back to school. Since you have been on your own for a while, you are probably eligible for financial aid. Think about it – you should get a formal education.

  • November 30, 2014 at 3:02 pm

    Thank you all. I had to try just because I knew most people in my position don't or can't. I really had to learn, that is what I wanted most, and that I did, more so than I anticipated but in a good way :p

  • December 9, 2014 at 10:06 am

    Any books you've written? (Or mags, recordings
    Please advise me about good books for us newbies.
    I was a writer, but my MS and oscilopsia can give my eye aches, and my fingers get twisted and spasm.
    thanks for being my only support you are the youngster (20) and im the 60 year old grandma of 5. Thanks for paying attention to the details…LC WESTMORE

  • December 10, 2014 at 4:26 pm

    I want to write one but I am waiting for the right time. When is that? I don't know, I figure I will know it when it's here and as of yet it has not come but when I do it will be all over my blog haha.


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