Life is not a race to the finish line

The ever evolving, “Where are you going with your blog? or “What do you want to do with your blog question?”…Guess what! I still don’t know……….lol.
Everytime, I think I have an answer it evolves. For each question I answer, I come up with 20 more, which sends me back to the drawing board.
A couple of weeks ago I CRASHED HARD, literally to the point of tears. After all the tears were dried up, and I walked away for a couple days I let the things that I have learned sink in. I wasn’t crying about the blog. I was crying because I let myself get overwhelmed with trying to do too many things, both on the internet and with my friends and family.

Welcome to my Blender of a Brain

I had this fantastic idea to start a blog.  I’m pretty good at finding the positive in even the worst situation, maybe I can help other people do the same.  Or maybe I can write about the “taboo” topics of MS, the shit no one wants to share with “normal people”.  Yes that would help because then people will know that they aren’t alone!  I was also toying with a new (to me) thought…. Do you ever realize how all the commercials on TV are from drug companies?  (Some of those side effects seem worse than the symptoms you are experiencing)  Pretty scary!  Then the conspiracy theorist in me comes out…. “What if its actually the drugs that are making you sick, or keeping you sick?”  Let’s test this out.  But where to begin?!?!  Yes that ONE question turned into 20 more also.  Ah ha!  That’s what I will write about.  My true life journey of getting healthier…..heh.  DUMB ASS!!! ( me not you)

I wish I could tell you that I had this great epiphany that I should slow down, but I didn’t.  My body told me.  The tears were a warning sign that I was getting overwhelmed.  The not sleeping at night was another.  But the knock me flat on my ass cold, flu, sickness thing that hit me was the real WAKE UP CALL. ( I am the most fidgety,  can’t sit still, am hardly ever home person you might know.)  The fact that I didn’t get out of bed for two days or leave my house for a week was my body protecting itself and saying….

What I really need to do is slow the hell down.  While it’s good to have goals, it is NOT good to flip your whole life upside down overnight to accomplish them.  My ultimate goal in life is to be better a better ME than I was before.  I am always telling people to slow down and just take a deep breath. So why don’t I listen to myself?!?!

I am also ALWAYS saying, “Focus on the positive”.  So here goes.  I’ve learned a lot over the last couple months.  I’ve met some great people, and made some new friends.  I stepped out of my comfort zone several times, and somehow even managed to lose weight.  I accomplished the monthly goals I made for myself each month, and now I am just focusing on getting through the next day.  One day at a time!

To all of you reading this, this isn’t goodbye.  (I paid for a whole year of wordpress :P)  and I still have lots to learn.  I just needed to “unload” and wanted to say Thank you for spending your time with me.

 

 

 

 

 

My decision to start Tysabri Part 5 of 5.

In February of this year my doctor said, “Hey your MS seems to have been pretty stable for some time now, I know you are JC neg, but you’ve also been on Tysabri for about 8 years, why don’t we look at switching you to an 8 week cycle?”

W H Y ? ! ? ! ? ! ?

The long and short of it……

“Someone, somewhere” said “The longer you stay on Tysabri, the greater your odds are for developing PML or the JC virus.  Tysabri stays in your system for 8 weeks anyway, why not get fewer treatments, so you can continue to receive the drug longer?”  Blah, Blah, Blah.  (I hope you can tell by the tone of my writing, I feel and FELT this was a very bad decision for me.)  What the hell do I know anyway, I’ve just been living with MS for 20 years?!?!

Reluctantly, very reluctantly, I agreed to switch to a 6 week schedule.  I would compromise by stretching it out two more weeks, but would not agree to stretch it to 8.  For the first time ever, I experienced what people refer to as “slump week”.  As I sat here trying to define “slump week” for you, I decided to try to “Google” it for kicks.  I typed slump week, and the search finished it for me slump week tysabri with pages and pages of listings.  Heh, so I’m not alone.

For me specifically, I describe “slump week” as all of my MS symptoms worsening.  I didn’t get new symptoms, but the fatigue I have DOUBLED, as did the amount of time I spent sleeping.  I had a harder time focusing.  I felt like each of my limbs had gained 30 lbs, and I spent week 5 on the couch. NOT FUN!

In June, 4 months later, I was at my niece’s wedding in Georgia and I suddenly couldn’t raise my toes on my left foot.  In fact, the only way I could walk without tripping was to try to lift my entire leg from my hip.  (visualize marching?)  I don’t have that kind of strength in my hip, leg, or foot, and I fell 4 times that week before I could get home to Illinois to see my doctor.  I also developed sciatic pain down the right side of my body.  While they say this is not related to MS, I have to disagree.  My body certainly did not like the additional sitting I had to do, or the weird way I was having to walk and it was letting me know with all kinds of new pain.

I spent the next 2 months getting MRI’s, seeing a neurosurgeon, (you know it must be the displacement of my spinal cord from 7 years ago) going back to physical therapy, and eventually being fitted for an AFO for foot drop.  I was angry, depressed, or sleeping all the time.  Wearing the AFO, helped me not trip over my foot, but it caused my calf muscles to spasm daily.  Yah more pain!?!?!

ENOUGH was enough!  Time to put on more armor and fight!jousting

In August, I told my neurologist that I didn’t care what “someone somewhere” said.  I wanted to be on Tysabri every four weeks.  It works for me.  Stop trying to fix what wasn’t broken!  I am very angry with him still ,and I do blame the length between doses as the reason I feel I have regressed.  I know, logically, the heat could have affected me, as could all the “family time”, but my gut says it was the schedule change of the medication.

I have received 2 doses at the 4 week interval again, and I am due for the next infusion  next week.  I am seeing a chiropractor biweekly, and I’ve made it a goal to walk on the treadmill every  day for at least a total of a mile.  (which I have done every day for a full two weeks) I am not “back to where I was” in February, but I am working hard to get there.  One step at a time.footprints

 

 

The STRUGGLE is real

As if adulting wasn’t hard enough, try throwing technology into the mix.  Last week I posted a list of goals for October.  They were:

  1. Losing weight and improving my health
  2. Continuing to learn word press and webpage design
  3. Clean out my closet (finishing something I started a long time ago)

I ended my post saying that when you make a tremendous list you set yourself up to fail.  I was only going to make baby steps to make a few areas of my life more manageable.

bandicam 2017-10-12 18-43-34-071

HA HA HA HA HA HA HA HA HA HA HA

In an effort to try to be more organized, I have been trying to use my phone to help me keep track of all these projects, but in an effort to have more free time and be more organized, I feel like my face is stuck in the phone ALL the time trying to learn how to coexist with technology.   OMG!  I am becoming one of THOSE people!

While I still have my previously mentioned goals, I have slightly revised them.

  1. Walk one mile every day (even if it’s a total of a mile, not a full mile at a time, it’s still more than I am doing now)
  2. While I still plan to continue learning wordpress and 10,000 other apps, I need a bit more structure to my plan. A schedule perhaps?
  3. Continue working on the cross stitch since it has actually been a major stress relief when I unplug technology for the night.
  4. Remember to laugh

This morning so far, I have walked a mile, drank 32 ounces of water, signed into wordpress, and laughed at myself for over an hour.  I think I will spend this week blogging about some of my technology faux pas.  Please feel free to read, share, and even comment on some of your own!