My decision to start Tysabri 2 of 5

It was time to find a new doctor that would FIGHT FOR ME and listen to me.  After seeing several local doctors, I ended up going to Chicago to see an MS specialist. I live in a small city in Illinois, (you know the kind where the number of livestock out number people?) so this was gonna be a helluva trek.  One and ½ hours each way.  After getting approval from my insurance company, gathering 50 lbs of MRI films, and my ginormous box of medications.  I headed off to see “the wizard”.

When I entered the hospital, I was overwhelmed by the number of white coats running around.  Let’s not talk about the fact that most of them looked half my age.  (I’m still getting used to the fact that the doctors with the newest technology are younger than me.  When I was growing up the same doctor that delivered you took care of you until you died or they died …..whichever came first)

Thankfully there are many better ways to choose a doctor now.

This is the point that I was introduced to Tysabri.  I thought I was overwhelmed by the number of doctors?  That number was nothing in comparison to the amount of information I received.  What sticks out in my Brain is :

DOC : Tysabri or Natalizumab is the newest strongest drug on the market for treating MS.  It has even been shown to help reduce lesions, thereby reducing disability.  Some people have even been able to walk again!!!! ( And all the other sales pitches out there.)

Grace: Ok, so what’s the catch?  Why isn’t everyone using it? And why haven’t I heard of this before?!?

DOC: Well, there is a small chance that taking Tysabri can kill you.

Grace:  STUNNED SILENCE

Doc:  But the risks are low, only about 1 in 1000 people have “caught” the brain virus that leads to death.

Grace :

MORE STUNNED SILENCE, maybe some drooling?

 

 

Doc:  Grace looking over your MRI’s and prior medical history, Betaseron is not doing an adequate job of controlling your symptoms.  Having to take steroids 3 times a year is not well controlled you’re spending more time in a wheelchair than you are out of it.  You’ve told me yourself that you have watched other family members die from MS, don’t you think this is a better choice?

Grace: blank stare

Doc: Why don’t you take this reading material home with you? There is a lot of information available online as well.  I think you will find that this is your best hope.

In 2009 the information I found about Tysabri was:

1. Tysabri was the most aggressive form of medication available to slow the progression of ms
2. You didn’t actually “catch” the brain virus which was called PML
3. Your risks for developing PML were stronger if you had had a lot of chemo or steroids in the past.
4. They would be testing your blood frequently and doing MRI’s to look for changes showing the development of PML.

Not enough information to make me switch yet.

 

MY decision to start Tysabri Part 1 of 5

My decision to start Tysabri, or Natalizumab was not made overnight.  Well maybe it was, but I think the events leading up to it made the decision for me.

Before you read anymore, please  know that I am not endorsing or recommending that anyone choose this drug, I am only sharing MY Journey, and it is a long one.

I  either made my decision to start or actually started Tysabri in 12/2009. I was in the hospital for IV Steriods AGAIN for ANOTHER MS Relapse.  I had been averaging two to three flares a year for the last 5 years.  This time I had couldn’t move or feel either of my legs.  I was beyond depressed.  I literally think I slipped into a vegetative state (not clinically, but I certainly wasn’t there mentally)

My MRI’s showed several herniated discs, my spinal cord was pinched and displaced, but I also had several active lesions from MS. No one could agree on the cause of the loss of use of my legs.  To call the doctors a team of doctors was ridiculous.  It felt like they were fighting with each other instead of FOR me.

After being hospitalized for the week,  I began to regain some feeling and very slight movement of my legs.  The five days of steroids were over and the only thing the doctors could agree on is that it was going to take some time and a lot of physical therapy for me to hopefully regain some mobility.  They discharged me and wrote orders for home health to visit me everyday.

I don’t know if it is MS, the drugs I took for MS and depression , or basic survival skills of blocking out bad memories, but the timeline is a bit blurry for me about how things happened next.  The things I do remember though are:

Being left outside in the rain in a wheelchair

We had at least one step to get into or out of our house at every door.  Navigating a wheelchair with very weak legs was hard enough, but the steps were killer.  I was so tired of being confined to 4 walls in the house and NEEDED to get some fresh air.  I begged my now ex-husband to take me outside, just for a little bit.  It was a major ordeal, and turned into a shouting match about why he hadn’t built a ramp yet.  He stormed off and left me outside.  ( I don’t blame him for his actions,  I was scared and very mean and the mood swings were insane.  He had been doing double duty with the kids and working full time and didn’t have a clue how to build a ramp)  It’s important that I share this story because I think it was the first in the series of events that lead to my decision to start Tysabri.  It began to pour outside and there was nothing I could do but sit.  I tried to wheel myself to the front door, but the stairs where in my way to getting close enough to reach the door or doorbell. No one could hear me crying or screaming for help. My youngest daughter came looking for me to tattle on her sister for something she had done.  When she found me, I don’t know who was more scared. Her or me.  I was crying and freezing.  I had never been so helpless.

My youngest daughter wouldn’t come near me.

After that night, my youngest daughter wouldn’t come near me.  She thought that if she touched me, she would break me more.  Looking back now I think she may have been a little bit afraid of me after watching me experience a couple episodes of “Roid rage”.   Maybe she was afraid that I was dying.  This memory, I can tell is too painful to relive or think about too much, So I will try to focus on the positives and leave it at that.  It was time for something to change, if the doctors I had were not helping me I would find one that would.

We are supposed to make our children feel safe and loved, not afraid!

OMG what had I done?

I will post the next part soon.  I never knew that writing could be so therapeutic and I am working on laying those demons to rest.

 

If it’s not broke, don’t fix it!

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

 

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?

*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!

 

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.

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!