Tag: ms

If it’s not broke, don’t fix it!

~ msgracefulnot ~ 1 Comment

On October 4, 2017, I received the following in a letter from my neurologist:

20171019_142722

 

After reading this the first thing I thought was

“DAMMIT” ! Stop trying to change my medication!

I have made my decision, I don’t want to change. It works for me!

My roommate overheard my exclamation, and immediately offered his unsolicited opinion “I don’t know why you’re taking a drug that you know will probably kill you.” Followed by, “Exercise more, eat better.”

This only served to make me more angry.  While for me anger is an excellent motivator, it is not a healthy place to stay.  So I decided to try to interpret the reasons behind my anger.

I have spent the last week in my head trying to sort that out.

Why did I get so angry?

Because I didn’t make my decision without weighing all my options.

Having MS means I have to adjust to changes all the time

  • changing my plans because I am too tired, or my legs won’t work, or the weather isn’t cooperating
  • selecting the type of clothing I am “allowed” to wear.  I have to wear easily removable bottoms because of my incontinence issues.  I don’t like pants because they aggravate the pins and needles feelings in my leg.  Most things don’t match the one pair of shoes I own that accommodates the AFO or orthotics I am supposed to wear.

This is working for me I don’t want to change it!  It makes me remember and feel that dark place I was in when I made the decision to start Tysabri.

As for now, the blood test will wait.  I have other goals to accomplish this week and have spent enough time being angry.  But YAH I walked a mile so far today and have a friend coming to push me for another walk.  Yah being active!

I think it would be healthy for me to work on letting go of some of those memories.  Writing really does help, whether you publish or not.  I am going to spend some more time this week writing about my decision to start and stay on Tysabri.  At the very least, putting it out there will free up some space in my head 🙂

 

 

Why don’t you work?

~ msgracefulnot ~ 6 Comments

*please be advised before reading this…This post contains foul language and a dose of sarcasm*

It never fails, the question will always come up, often more than once.  You may be filling out paperwork for Social Security, medical leave for an employer, or some insensitive asshat comes home from work and says, “Well I worked all day, what did you do?” Or “Why didn’t you get that done?”

Let me start with the basic “easy” answer.  I HAVE MULTIPLE SCLEROSIS

For me, this means:

I have doctor appointments EVERY week, sometimes EVERY DAY of EVERY week dealing with whatever the most pressing issue for the week is. These “issues” include:

  • Urinary and Bowel Incontinence (most often in public of course)
  • Balance and ambulatory difficulties (numb and extremely heavy legs, and almost 0 core muscles.)
  • Short term memory issues and other cognitive fogginess
  • Pain
  • Fatigue
  • Depression….who would have guessed?

When I am not AT a doctor appointment, I deal with Insurance Companies and pharmacies on a weekly basis. This includes:

  1. Borrowing from Peter to pay Paul
  2. Applying for various drug companies financial aid programs. (My copay for Tysabri is $1200.00 a month.  This is after Medicare is billed $35,000 each month.)
  3. Calling doctors to ask them to fill out additional paperwork for the insurance company to explain the necessity for the drug. (even though I have been taking most of the same ones for the same reasons for many years.)

HEY FOLKS, there is NOT a cure for MS!!!!

I just realized that I have more contacts in my phone for medical issues than I do for friends and family 😦

Believe it or not, I also spend a lot of time trying to take care of and HELP MYSELF:

  1. Some form of additional physical activity each day ( walking, stretching, yoga)
  2. Keeping up to date with current treatments for MS symptoms
  3. Occasionally I even shower and Brush my teeth :P.  DON”T LAUGH, some days I don’t even have the energy to do that.

So back to the original question……… “Why don’t you work?”

Here is my Angry answer:

Who says I don’t?  I work harder each and every single day NOW than I ever did when I had a “full time job” working 60- 80 hours a week.  Who the fuck are you to tell me I don’t work?

I wish I could go into work for a set 8 hours a day to the same place, doing the same thing, because then at least I would know what to expect.  I would know that it was going to end at some point.    I didn’t ask for this shit.

I feel like someone has given me the keys to an 18 wheeler and told me I had 2 days to drive a load of cattle from the state of Washington to the state of Florida.  Oh I forgot to mention, I don’t know how to drive an 18 wheeler, nor do I know anything about cattle.  Where is the sense in that?… but you can learn right?  Yes just pencil that in on my calendar wherever you find a free spot.  Please remember that it will take me twice as long  to POSSIBLY retain the new information since my brain tries to store information in its plaque covered areas

I’m not asking for a “cookie” or your pity.  I’m just telling you I don’t need your damn judgment either.  So basically my answer to why I don’t work is……….FUCK YOU….Have a nice day!

 

Don’t try this at home!

~ msgracefulnot ~ Leave a comment

I have been sitting here for an hour trying to start writing about MS.  I don’t have writer’s block, I have too many topics that I can’t focus on just one.  I’ve reviewed my pre-written list of Ramblings, and instead of selecting one, I’ve added 20 more.  While this is good for the future, it’s not what I want to do right now, so I have sat and stared at the screen literally for an hour.  Thankfully? I have places I have to be today and can’t continue to sit here for another hour.

The first place I have to go this morning is to the Eye doctor, SILLY DOCTOR gave me BIFOCALS last time, which in hindsight is utterly ridiculous for a person with MS. (I watch the ground when I walk, because I can’t feel my feet).  It’s not justified, but I am a bit upset with said doctor for not thinking of that considering they watched me walk in and out of their office several times.  Why didn’t they warn me?

I did admit that my upset is unjustified (doesn’t change the fact that it is there though).  It was MY mistake.  While I did notice my issues when leaving the doctor that first day, I thought I could manage and learn to deal with it.

Yeah Grace add another thing to your list of “deal with it”?!?!?

 I think I mentioned before that I make a lot of mistakes, and I believe that is ok as long as you learn from them.  In my case, it took me not one, not two, but 3 WIPEOUTS before I came to the conclusion that I REALLY, REALLY need new glasses.

Did I mention a person with walking and balance issues should NOT wear bifocals?!?!?

A PERSON WITH WALKING AND BALANCE ISSUES SHOULD NEVER WEAR BIFOCALS!!!!!

A PERSON WITH WALKING AND BALANCE ISSUES SHOULD NEVER WEAR BIFOCALS!!!!!

A PERSON WITH WALKING AND BALANCE ISSUES SHOULD NEVER WEAR BIFOCALS!!!!!

Well as they say, 3rd time is a charm?  Please learn from my experience and DON’T TRY THIS AT HOME!!

I do hope to post about MS later today…wish me luck?

MS Multiple Sclerosis Diagnosis

~ msgracefulnot ~ 6 Comments

Many people that have been diagnosed with MS can look back in their lives and identify times that they had MS symptoms long before they were diagnosed with the disease.  When I tell my story though, I am only speaking about the events directly leading up to my diagnosis.  In hindsight, I can tell you that I am grateful for the way things played out, but I certainly wasn’t when it was happening to me.

I was at work and a coworker friend of mine was kicking the back of my knee with her foot as we were walking down the hall.  I don’t remember how many times she did it, or how many times I avoided tripping, but I do remember the one I went down on.  Not only had I torn my nylons, but two fingers in my left hand went numb within the hour.  It seemed strange, since I don’t remember landing on my fingers, but I shrugged it off.  There were more important things to think about like how was I going to get even with Michelle for bruising my pride.  I went to sleep that night, figuring the numbness would go away in the morning and didn’t give it a second thought. When I woke up the next morning my entire left hand was numb, and by noon from my fingertips to the middle of my forearm was numb.   Over the next few days the numbness continued to spread up the rest of my arm and down the left side of my body to my left knee.

Call to the doctor

The order of events that happened next are kind of a blur to me.  Maybe because they happened so quickly, maybe because I was terrified and tried to block them out, maybe because they happened almost 20 years ago.  Within a week my doctor ordered Evoked Response tests, 3 MRI’s, a spinal tap, and enough bloodwork to save a nation.  Then the call came.  “We need you to come into our office to discuss your test results, TODAY.

As I type this, the hairs on my arm are beginning to stand up, and I can feel my breath catching in my throat.  I don’t remember the words she used to tell me I had Multiple Sclerosis.  I remember the silence that followed and the hopeless and pitiful looks she and her nurse were giving me.  Somehow the numbness that I had been feeling during the past week seemed to take over my brain and my emotions.  (pun intended).  The doctor ordered a course of steroids for me and gradually I started to regain feeling in the reverse order that I had lost it.  First my trunk, then my chest and shoulder, and eventually my arm except for my left hand which is still numb.

As I mentioned earlier that was almost 20 years ago, but that is where it started for me.  In the last 2 decades I have learned and experienced so many things due to this disease that I think may be helpful to share with others.  Living with MS is not new to me, but blogging is.  If you’re willing join me on this new adventure of mine, please follow the blog, or Look me up on Facebook. Grace Fullnot (same picture I use here) If you do add me on facebook, please send me a short message saying “Hi”, I saw your blog, or something to that effect, so that I know you aren’t a robot.

If you are reading this because you have MS or think you might, please know that yes it can be scary, it’s ok to be mad, but it really is NOT the end of the world! There are many resources out there to help you with this!!!!!!