Hello 2001- A new Millenium...
Hope Fades

I spent the remander of the time trying to catch up on needed
sleep etc as all the "stress" and running back and forth finally
paid its toll on my MS. After being on my shots for a number of months,
I realized the "side-effects" weren't getting any better.
All the support nurses said this was normal and would
take a while. Hmmm, 8 months later and their still
the same? Something wasn't clicking right.

My memory was lapsing more and more and my energy level was at an
all time low. I assumed this was from over doing it the months
before hand. I went to my dr.'s office and once again wrote the
wrong date and time down. No biggie, they usually laugh anyway.
Two days later, I showed up at his office and he and his staff
were totally shocked. I had taken my shot earlier that
morning and by the time I got to his office, I could
barely walk, had a fever of 103.2 and my tremors and speech
were the worst they had ever seen. He asked if I had a "relapse".
I laughed and said no, its like this every week after I
take my shot. I was told these side-effects were "normal".

After flipping through my chart, which has become as huge as a dictionary
he proceeded to hang his head. Somehow I knew what was coming
but wasnt ready to hear what I was about to hear. After
taking a deep sigh, he looked at me and said one of the hardest things
about being a doctor is having to tell a patient that there is
nothing else he can do except keep me comfortable. Now I had to wonder
what exactly "comfortable" was. Since Ive had this disease, I have forgotten
what that word means. Surving... I know what that means. Keep
fighting..that too I recognized... but "comfortable"? That word is like
something in a foreign language. "Comfortable" as it turns out, meant
painkillers for the pain and antidepressants to help me "cope" with
what lies down the road.

After being given a ton of prescriptions and lab work papers, I grabbed
my walker and headed for the door. I felt the same way I did over
a year ago when I found out I had MS. Only I had more knowledge about
the disease now then I did back then. I realised I
was in deep shit. Kind of like when a cancer patient is told
"take these and hang in here". It didnt really hit me til the next
day as I was too sick to comprehend much the day I saw him. The
next day was when I had to sit down with my husband and deliver
the news. Thats when it hit me like a ton of bricks.

I kind of laughed at first, being as this is typical of our luck lately then
cried because I felt like somehow I had let him and my daughter down.
I kind of relived the initial shock of hearing I had MS
only this time there were more swear words. I went from damnit I have MS
to isnt this just freakin great?! I went from what
now? to holy shit batgirl I did all they told me to do.
He asked me what I was afraid of most? I looked at him and
said I wasnt afraid of dying. I knew I was the
best person I could be. Ive made alot of mistakes in my life
but I had honestly tried to be the best wife, mom,friend etc that
I could be. What scared me more then dying itself was
the thought of being put in a nursing home one day as this mess
progresses. That scares me more then anything.

I have just returned from an overnight stay at the hospital for a "sleep disorder"
clinic. Isnt that great? Another "disorder". They have found
that I have "sleep apena". I stop breathing at night. They
"monitor" me while Im sleeping to find out how many times
a night and for how long. After my pulmanary specialist gets
the results, Iam supposed to return back to the hospital for
another night while they regulate oxygen content in the hopes
that this (sleeping with oxygen)helps me at night. I should be
finding this out in a few weeks I assume.

I dont know where this leaves me or where my "monster" is going to take me next
but for as long as I can, I will continue to update this page.
Ive done this for 2 reasons actually. One,it helps me "dump"
my thoughts and feeling and secondly,there are many people going
through many of the things I have had to go through. If nothing else
they too will know theyre not alone in fighting MS. To those of
you who are staying in remission---give it hell! To those of us
going through the end half....hang on and God bless as you will be
the role models of courage and inspiration for the others........
May God continue to keep you in his prayers, give you courage
to keep going and the strength to "hang tough"......