This summer has brought about the
end to many chapters in my life. My youngest two daughters learned how to ride
their bikes without training wheels and to swim without the assistance of a
flotation device. I am proud of their successes. A little sad that they are
growing up so fast, but proud of them nonetheless. End of the babies chapter of my life.
This summer marked 14 wonderful
years with the man whom I love more than I ever thought possible. Who says
things like, “I love you… and will ALWAYS be by your side.” End of the newlywed chapter of my life.
(Still feel like newlyweds though) Did I say that I really, really, really,
love this man? {I need to learn a new adverb to describe him}
It was the two-year mark of my
insane health/headache. Two years of seeing the same doctor that informed me
that what I had was a wait and see condition. Treating me would be of no use in
the long-run. End of stinky meany
doctors chapter of my life. This is my
favorite end of chapter thus far!
I decided to go to my primary care doctor for
the pain I have been experiencing in my legs. He gave me some medication with
the caveat that it might not work. He was right, it didn’t work on my leg pain,
but it really helped my back pain! I, being of the need to know all the things mind
frame, looked up the medication I was given. It is a muscle relaxer. Works to
relax muscles, so why in the world is it not working? This medicine works for
pain caused by fibromyalgia. Therefore, it isn’t that sort of pain. This
medicine works for pulled, sprained, strained muscles. So still not that. This
medication works great for people who have been in a car accident, motorcycle
accident and had sinus surgery, all in a 2 month time period, to feel no pain…
so none of those either (but it worked for my hubby, he has really been through
it this summer!) So, I get down to the bottom of the list of uses for this
medication and come across the statement:
“Cyclobenzaprine
HCl relieves skeletal muscle spasm of local origin without interfering with
muscle function. It is ineffective in muscle spasm due to central nervous system disease.”
Well,
I guess now I know why that medicine isn’t working out for me. I suppose this would be the end of normal
medicine working for me chapter?
The primary
care doctor decided that I needed a 2nd opinion and an appointment
with the neuro ophthalmologist. The eye appointment came first. It was
discovered at this appointment that I needed to blink more. Apparently, if you
don’t blink enough your tear ducts get all red and foamy. I know Ewwwww. After
3 hours of testing, I found out that: my vision is still very good 20:15 , my eyes are dry (the reason for the
stabbing pain followed by blurry/double vision), and the headache that I have
had for the last 2.5 years was not transformed migraine, but trigeminal
neuralgia. And, an occasional weather migraine thrown in to make things
interesting. End of thinking I had daily
transformed migraines chapter!
The cure?
Slimy eye drops in my eyes 4 times a day, and a heating pad over my eyes for 10
minutes every day for the next 3 months. Did I tell you slimy gunk in my eyes
4x a day every single day?
Have you
ever tried to sit still for 10 minutes with your eyes closed not doing anything?
All you can do is lay there and listen. Kudos to you if you can efficiently
relax. I’m no good at relaxing. 10 minutes feels like hours. I’m the multi-tasking
Queen I tell ya, well maybe a princess. I can’t watch TV without doing
something with my hands. I can’t talk on the phone without cleaning my house. I
can’t take a walk without praying/talking/singing. This mind and body are
always active. Maybe by the end of these 3 months I will have come to enjoy it,
but I’m not there yet, and it’s been a week and a half. In addition to the eye
drops and heat, I was given another prescription. For the first 7 days, I was
in pain free heaven… dizzy pain free heaven… but pain free nonetheless. I liked
this new medicine. However, by day 8 my body was getting used to it. Sad, sad
pitiful day. Just Ewww this is the beginning
of a new gross chapter of slimy eye drops and forced heating pad on the eyes rest.
On day 9, I got the phone call that
I could go in the next day for my second opinion. After a short Q and A session,
the doctor says. “So what is your current neurologist’s hesitation in
diagnosing you?” I replied that my current doctor thought that early treatment
was of no value. And… he asks me, “is your doctor, Dr. so and so?”!!! I said, “YES!
Does that explain anything?” He said it did. Sad that my current/old doctor has
a reputation. So, prospective new doctor did an exam. Talked to me about my 2.5
years worth of MRI’s and presented me with a diagnosis. And also informed me
that lazy radiologist did not describe size and locations of old lesions.
Prompting new neuro guy to look at latest MRI stating that “No Change” was not
an acceptable radiology report. And New Neuro guy found a new lesion. Old Neuro
guy didn’t bother to look at new MRI.
Now I have to say it was one of the
best/worst days. For two and a half years I have been hurting and being told
that it’s “just your fibromyalgia” (well actually for the last 12 years I have
been told that) and migraine, take an anti psychotic, anti depressant, anti
seizure and only come back if you lose complete control of part of your body. I
always left the doctor feeling like I was crazy. I must be crazy if I hurt and
there is no reason why. My MRI’s show progressive worseness (that’s a word? No
way!) a new owie in my brain on every MRI. A new hole, with pain and numbness
and weird symptoms that go along with them. So I guess literally it was all in
my head. Wow, I have Swiss cheese brain. But on Thursday last week I found out
that I am not crazy. I just have MS! Yeah, a diagnosis after all this time. End of the “You are just CRAZY” chapter of
my life.
Oh crap…
now what?!?!?! As I sat there with relief and a little bit of despair, I was
handed a stack of medication information a foot high! (okay, maybe 3 inches,
but it felt like a foot) The nurse getting all the required information shared
in pleasant chit chat with me. So, I had to ask, “How many of your patients are
relieved to be diagnosed with Multiple Sclerosis?” She gave me a disturbed
smile and let me know I was the first.
Well, I deal with bad news really
well I guess? I told her that I had been dealing with the stuff and the testing
and the watching and the waiting for two and a half years and knew that MS was a
major possibility based on all the
other possibilities being ruled out. She was shocked that I had been dealing
with this for so long and could understand my relief at finally having an
answer. The end of the not knowing why
my body is always spazzing out on me chapter.
When I left their offices, I tried
to call my primary doc to let him know I needed the referral, but it was after
business hours. So first thing the next morning I called for an appointment.
(None) So I drove there, dropped of the referral and the new pain medication
prescription (And they didn’t have it, and I still don’t have it, it takes 5-7
business days to order it, and it’s a holiday weekend don’t you know?) Hope it
works for me. An exercise in patience?
By the time I got home my P.C.M.
was calling me to let me know that he had the referral turned in. He asked me
about my legs and if the medicine helped. He wasn’t too surprised that it
didn’t. He said he was happy for me that I finally had the answers I needed,
but sorry it was MS. I thanked him for his great service and that was that. He
was my first nice doctor. He believed me when I told him I hurt because he is
very aware of my pain tolerance. (Because procedure, no numbing meds because
I’m allergic, and I said the procedure didn’t hurt so he knew I was in pain
this time.)
So now, I
have to decide what medication I want to take. What medicine has benefits that
out weigh the really bad side effects? Yesterday while researching one of the
medications, I found that it is made with…get this… genetically altered Chinese
Hamster Ovaries!!! Can’t make this stuff up.
So that is
actually the medicine I think I will be going with. But, I’ll let you know what
medication the Neurologist suggests. Maybe.
My reaction
to all this? In 2.5 years of knowing that some day I will have MS I have not
once broken down and cried, had a pity party or wallowed in self pity. I know
that day has to be coming soon. There is only so much a person can deal with,
with an amazing sense of humor. You should hear me laughing at myself about
that one. (I don’t think it’s amazing, that was sarcasm.)
Next month I will be taking a trip
to the beautiful state of Alaska Texas Texas Alaska
Or do I
wait until I get home? When we are moving to a new rental home because the
current rental home we are living in is being sold. Oh and throw in
Thanksgiving and home schooling 4 kids. This is going to be an extremely busy
fall y’all. Plus the side effects of a new medication. When would you start the
medication? The sooner the better they say, and I’m already 2.5 years behind
the curve.
So rather than getting all upset
and feeling sorry for myself (That I’m sure will come later) I have to focus on
all the wonderful things in my life. Whatever is good, whatever is true,
whatever is pure… you know, focus on those things.
Today I took a walk because my legs
were cramping REALLLLLY bad. Like pulled muscles makes you want to say dirty
words bad. So I thought to myself ‘I’ll take a walk, get the blood pumping, get
a little exercise.’ So 2 miles and an hour later as I’m limping onto the porch
and giving my hubby a ‘Hellooooooo Hunny’ kiss, I realize a few things.
- Going up hill is much easier than down hill when your quads are crampy.
- I walk slowly when my legs hurt. I’ve never done a 30 min mile in my life.
- The walking although excellent in theory was of no apparent use.
- I didn’t get any exercise (you can’t count it if it’s that slow! My heart rate didn’t go up at all.)
But on the bright side. I did get
out and enjoy the beautiful fall afternoon here in San
Antonio
I also wrote today. That is
exciting because I have been avoiding it for the last couple of weeks. I’m up
to chapter 28 of the 46 I have planned. I also did a little reading, and went
to a Bible study this morning. My hubby will be very pleased with the topic we
talked about today! I watched my two oldest daughters show me how much they
love me by making dinner so that I wouldn’t have to stand up any longer. I
taught my younger two daughters how to draw a proportionately accurate face.
Today was a good day. Despite the pain, I have felt God’s hand guiding me
through each moment. This is just a little thing to Him. He has the power to do
great things in me, and maybe this MS will prove to be one of the greatest
gifts I could have ever received from Him.
Time will
tell. I look forward to the journey. I pray you do too.
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