Better than I was yesterday

I overthink!…. it’s true.  I OVERTHINK about EVERYTHING ALL the time!!!  So much so that I get lost in my brain playing devil’s advocate, trying to make sure I am seeing all sides of a situation.  I was in a funk this morning and couldn’t shake it,  I didn’t even have a known reason.  Then I turned on the camera, and started talking to myself.  I did a “brain dump”.

After making this video, before actually uploading it, I called a very wise, honest new friend of mine and asked him to help me “get out of my head”.  I felt like he listened to me ramble without judgment, and then I listened to him.  He gives good advice! Lots of advice, but good advice.  Thank you for that “Superman”!!!!

Anyway the moral of all of this, is that I want to be a better person.  I’m not saying that I am a bad person, but I want to be better than I was yesterday.  Sometimes I really hate that I overthink everything, but maybe its the overthinking that will get me there?

What started all of this…. I belong to many Facebook groups for people dealing with Chronic Illness, more specifically Multiple Sclerosis.  Yesterday in one of the groups someone posted a picture of a “nasty note” that was left on their car, saying something to the effect of “you don’t look sick, why are you taking a spot that someone who is sick needs?”  The note was much more harsh than that, but I think you get my point?  Anyway, the person posted the picture of the note saying, “because people suck”.  I assume she was hurt and just wanted to vent, and was looking for support.  Ok I get it…kind of….  What I don’t get though is why of the 409 emoji’s and comments that followed on the thread, I was one of the few that simply replied, “I am sorry that happened to you”.  People started sharing their own stories about how much people suck and the cocky comments they respond to people with like, “Well maybe I don’t look sick, but you don’t look stupid!”  (no offense, but after saying that and “showing your ass” to me, you kind of do)  Why does one wrong make a right?  Someone said or did something to hurt you and it’s automatically ok to hurt them back?!?!??!  I don’t get it.  Why not be better than them?  Why not be stronger than them?

What really set me off about the thread of comments, was one woman talking about how her 9 year old “told off” someone that confronted her when she was questioned for parking in the handicap spot.  Seriously?!~?~!?  Why didn’t she pull her child aside and say, “Some people just don’t get it”?  Why didn’t she take this as a learning opportunity for her child to NOT Be judgmental and filled with hate?  Why did no one in this thread, suggest that to her?  I chose not to comment on the thread further because I realize that I will not “fix” everyone.  Honestly, I don’t have the time or energy for that.  But I also know that I don’t want to feed into that either.

In the 20 years that I have lived with MS, and however many years I have used a handicap parking placard, I have been confronted numerous times both verbally and in writing that I don’t LOOK disabled. Shrug…. Ok?  Do you feel better after saying that to me?  I literally just shrug and walk away.  Sometimes I TRY to smile first, sometimes I don’t.  Again….SHRUG.  Occasionally, I will attempt to educate someone that not all disabilities are visible, but most of the time I smh and walk away.

People wonder why their is so much hate and anger in the world, yet they feed into it themselves.  I know that I will be confronted again, I can not control that, but I can control how I react to it. I CAN BE A BETTER ME!!!!

Here is another link to the video of my “brain dump” if you would care to watch.

Thank you again to “superman” for letting me unload this morning!.  Treadmill time.  Busy Busy weekend here.  I hope everyone is able to stay warm this weekend 🙂

Choosing Tysabri

I received my # 95th dose of Tysabri yesterday, and FINALLY did the bloodwork for The JC Virus that is required.

While writing My decision to start Tysabri (the 5 part series) last week, I was able to work through my emotions regarding pressure to change medications and I have solidified my decision to stay on Tysabri.  Maybe not for the rest of my life, but for now, it works.  I am fully aware of the risks associated with remaining on the drug, but this is MY Decision, My MS, and MY LIFE.  (I may have to work on finding a new doctor soon, but I will deal with that when the time comes as well.)

So to answer the question, “Why did you choose Tysabri?”

BECAUSE FOR ME, IT WORKS!  sliding into the grave

I am fully aware of the risks associated with the drug, but I believe….

I did not ASK for MS, but you play the hand you are dealt.  I would rather have QUALITY of life than Quantity.  Hell, I jumped out of a perfectly good airplane remember?  Both of my daughters are in their 20’s, and although none of us want to “say goodbye”, I know they are strong and have all the tools they need to survive in this world.  Hell, I believe they are also strong enough to help change it.  The world we live in today is a scary place.  (I think the city I live in was ranked the 6th most dangerous city in the United States.)  My point is that I am more likely to be shot sitting at a traffic light, than to die from MS or PML.  When I do die, whatever the cause, I am donating my body to science.  Maybe they can find a cure for MS that way?

For now, I am making the most of each day I have.  If I can help ONE person feel not so scared and alone in this world… I have lived.

 

 

 

My decision to start Tysabri part 4 of 5

I began receiving Tysabri at the end of 2009, or the beginning of 2010. I’m not sure which, but I will try to remember to ask when I go in for my infusion next month.

In the beginning, I was terrified that I was going to be that 1 in 1000 that would “catch” PML. (Some days I feel that I would have no luck at all, if not for bad luck.) I was also terrified of the needles;  every doctor, nurse, tech, vampire, etc that pokes me with a needle blows my veins, and bruises me enough to make others question if I am abused. Thankfully, I have a port now!!

 

Every 4 weeks, I would have a full day of “adventure” to get my infusion. (even though the infusion only takes 2 hours.)  The adventure included: leaving my house at 8 am, driving 1 1/2 hours into the city, paying an exorbitant amount for parking, and making what felt like a 2 mile trek to the infusion room, all before getting to sit in the waiting room to check in for my infusion. After following the drug company’s protocol for checking in, I would have a 20 minute panic attack while the nurse looked for and blew my veins. (Did I mention YAH PORT?!?!  Yeah, 3 years before I finally got one! I’m a slow learner.)

Next, came the actual infusion itself.  This part was a piece of cake, all I had to do was lay or sit there for 2 hours while I received the medication intravenously.  Ok, it was a little more complicated than that.  I had to go to the restroom 2-3 times because of all the fluids I drank before hand to make finding my veins easier, in addition to the hours’ worth of fluids they pump in your body with the medication.  It was still relatively painless.  I kept telling myself, at least it was only one time per month instead of getting sick every other night, like I did while taking another MS drug, Betaseron.  Once I made the long drive back home, (hopefully missing rush hour) I could sleep the remainder of the day away if I needed to, and I frequently did. To be honest, at times, I also worried if the stress the whole ordeal caused me would make me have another ms flare up.

The only “reactions” I experienced from receiving Tysabri were headaches, and a feeling of sleepiness which until the last few years, I assumed were from the “adventure” itself. 

Tysabri didn’t automatically fix me.  I didn’t get a big burst of energy or start dancing a jig.  In fact, the first change was almost unnoticeable. After about 6 months, it dawned on me that I hadn’t needed steroids, or been hospitalized for a new flare up in several months.  Once I started to wrap my head around the fact that MS wasn’t running me over like a train, I began to relax a little bit. I started to commit myself to learning more about Tysabri, infusion centers, and what else I might try to do to FIGHT BACK against the MONSTER that had been winning the battle with my body and soul.

I have a very difficult time putting my experiences with receiving the infusion over the last 8 years chronological order, or giving exact dates so I’m not going to try.  I will, however; give a bit of a summary.

I have had 2 relapses in 8 years, and they were minor in comparison to the ones in the past. My depression has improved.  I still battle it every day, but I have a more positive outlook on life than I did 8 years ago. While Tysabri DOES NOT treat depression, I do believe a lot of my outlook has changed because I am not experiencing relapse after relapse or fast progression. I can walk about ½ mile continuously on a treadmill.  (More or less depending on the time of day what other activities I have done and the temperature in the house)  I have lost 60+ pounds and have started MOVING more.  I have done a lot of physical therapy, including horseback riding for 3 years.  I gave up soda.  I believe all of those things have helped me become a better “MS Warrior”.

I have mentioned before that I am not trying to “sell you” on Tysabri, or to tell you that it “fixed” me.  I am still “broken”.  BUT, it did give me hope.

Whatever path you decide to take on your ms journey (no it’s not a vacation, but it is a long road) I wish you the best and encourage you to fight harder than you think you can.  I truly didn’t know how hard I could fight until fighting was ALL I could do.

I will work on trying to finish the last part of “this story” later this week, but it has taken me more time to write this than I thought it would, and I need to keep moving!!!!

 

 

 

 

 

 

 

My decision to start Tysabri 3 of 5

And then this happened….

 

 

I was trying to continue strengthening my legs (pushing the time that I was out of the wheelchair) and I lost my balance AGAIN, and fell AGAIN.  I was home alone and of course I didn’t have my cell phone with me.  I tried to push myself up and instantly knew that I had broken my wrist.    By the time I was able to get to a phone to call for help, I had peed on myself and my wrist had doubled in size.    ARGH!

fallen
MS and Modesty don’t mix

I called a neighbor who helped me get cleaned up and drove me to the hospital, where they determined that my wrist was indeed broken and they would need to do surgery.

 

 

Over the next few days, I had surgery and began to have ANOTHER flare up. (maybe because of the stress of surgery?)  I don’t know for sure, but back in the hospital I went.  This is when I learned the importance of having a TEAM of doctors that communicate with each other. My new neurologist was not on staff at the local hospital, and I was back to the same doctors that I feel just throw steroids at everything.

While laying in the hospital, I made decision to give Tysabri a try. MS was winning the battle.  I wasn’t LIVING.  To be honest, a part of me didn’t want to live anymore.  I am not saying I was suicidal, though I have been there before, but if this is what my life was going to be,  I didn’t want it.  When I got out of the hospital I again went to see “the wizard” in Chicago, to start the process of being approved for Tysabri.

Some of the most important things I learned while making my decision to switch to Tysabri, and about living with a chronic illness in general are:

  1. “Dr. Google” is a scary ass monster
  2. There is no shortage of information regarding MS available online (in fact there is almost too much)
  3. While most have good intentions, most people on Facebook and other areas of the internet (myself included) are not doctors, and since their symptoms of MS and their lifestyles are probably different than yours, so is the best course of treatment for them.
  4. Doctors are just “practicing” medicine…they don’t know everything. Unfortunately, some of them are paid in some way to promote drug therapies.
  5.  It is so important that you have an unbiased friend. You need to have someone that you can share your fears with.  If you don’t have a friend that fits that description, there is NOTHING wrong with seeing a counselor.

In addition to spending countless hours on google, I found a group on Facebook for people that were taking tysabri, and made a new best friend in the process.  I could probably write an entire website on our friendship and bond over the years, but I have to save that for another time.

I am not endorsing Tysabri in any way.  I am only sharing the experiences I had, and what led to MY DECISION to begin Tysabri.  In my next post, I will share some of the experiences that I have had while being on this medication. Thank you for following!

I’m really having fun meeting new people 🙂

 

 

My decision to start Tysabri 2 of 5

Picture of an all knowing wizard

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”.

docs in whitecoatsWhen 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 SILENCEstunned one

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

stunned lady faceGrace :

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.