Are you prepared to die?

Before I continue, let me assure you that this is NOT a suicide note, nor is it a notice of my impending death.  This is a question I’ve asked and answered myself many times in my life.

If you’re not dying, why do you bring this up now?

I just received some unsettling blood tests, and I have some choices that I have to make.  When I receive bad news, in order to not “freak out”, I look back at all the things I have survived in my life to remind myself that I can be pretty damn tough.

As many of you know, I was diagnosed with MS over 20 years ago.  What you may or may not know is that I have had 3 family members die from complications of MS.  This disease has been “in my face” for many years before it actually caught me.  When I was diagnosed, I asked myself if I was ready to die, not if I was prepared, but if I was ready.  The answer was, “HELL NO!”  For the first year though, I didn’t do much to FIGHT it.  Instead, I began drinking ALOT.  I also started behaving very manically, (well if I’m going to die anyway, I’m going out with a bang)

About a year after my “MSaversary”,  I finally stopping running and faced the diagnosis. I began taking the disease modifying drug Betaseron.  For 10 years, I gave myself an injection every other night, yet my MS symptoms continued to steadily progress to the point that I was in a wheelchair more often than not.  I was constantly depressed.  During this time, my kidneys began shutting down, AND I was diagnosed with cervical cancer.  Around the 10 year mark, I think I WAS ready to die.  Not prepared, but ready.

At then end of 2009, my girls and I made the very long hard decision that I was going to begin receiving monthly infusions of Tysabri even though it could kill me.  I decided that QUALITY of life meant so much more to me than QUANTITY!  I have previously written about how the decision was made in a Five part series if you would like to read.  The decision to start Tysabri Part 1The decision to start Tysabri part 2, The decision to start Tysabri part 3, The decision to start Tysabri part 4, and finally, The decision to start Tysabri part 5.

To date I have received 121 infusions of Tysabri.  I credit this drug for giving me my quality of life back.  I do not regret my decision in anyway, in fact I have even argued with my doctor about NOT switching medications when he suggested that I consider it. Last year, I wrote “Who’s the boss anyway”? explaining my reason for denying the change.

At the end of last year, I had to see my neurologist so he could perform my yearly neurological exam, refill my prescriptions, and send me for the required JC virus test to be allowed to remain on Tysabri.  My son in law was nice enough to drive me to Chicago for the visit.  Because of my newest list of injuries, the doctor was unable to provide a complete exam.  The parts of the exam he was able to perform showed that I had increased numbness (lack of feeling) on the left side of my body.  I have also been having some issues with my vision (though I have been attributing that to my age).  He wrote the refills for my prescriptions, and the order for the bloodwork, and we agreed I would come back for a full exam once my foot healed enough to be able to walk on it.  (hopefully March)

NOW let’s talk about these unsettling blood tests….

My bloodwork came back stating that I was now JC+, meaning I had the John Cunningham Virus (JCV).  Not only did I test positive for the virus, but my titer levels are considered very high. 4.8!

hmmmm now what?  I have a decision (well several to make)

Here are the drug facts

In addition to revealing that I have now become JC+, my bloodwork revealed that my Absolute Eosinophils are high.  What the hell does that mean?  A quick Dr. Google search said…

Eosinophils are a type of disease-fighting white blood cell. This condition most often indicates a parasitic infection, an allergic reaction or cancer. You can have high levels of eosinophils in your blood (blood eosinophilia) or in tissues at the site of an infection or inflammation (tissue eosinophilia).

OF course the first thing I saw was CANCER……cmon!!!!!!!  Seriously?!?!?

After speaking with my Neurologist, WE have decided first to have the bloodwork performed again.  (there is always a chance for a false positive?)  Because of the decreased sensation on one side of my body, the increased balance issues, and vision changes, IF the test still comes back with a high Titer level, the first step will be to undergo further testing for PML.  I haven’t even thought about further testing for the High Eosinophils, I honestly believe that everything else going on in my body is causing that.

I have so many questions and decisions to make that I find myself asking again, “Am I prepared to die?”

 

 

 

 

Makes you wonder, “Who’s the Boss?”

“Kind of makes you wonder, who the boss is here, doesn’t it?” This was the last thing my neurologist said to my son in law as we left his office on Thursday.  You see, being on the MS drug Tysabri, requires me to perform three actions each year to remain on the drug.   I believe the three things I am required to do are CYA (cover your ass) for the doctors and drug company, though they present it as for my safety….shrug

A little bit of the back story here.  When Tysabri first came out on the market, it had to be recalled twice because the risks outweighed the potential benefits.  (it killed people)  Ok while it didn’t kill people itself, it caused some to develop PML (Progressive multifocal leukoencephalopathy (PML) is a rare and usually fatal viral disease characterized by progressive damage (-pathy) or inflammation of the white matter (leuko-) of the brain (-encephalo-) at multiple locations (multifocal).) which did kill people.   Either way it had to go.

Back on the Market

I began the drug shortly after it was released the 3rd time.  (YAH sign me up?!?!?)  SMH, actually for me, the risks were nothing in comparison to the potential gains. I was going downhill fast.  If you would like to read about how/why I started Tysabri, the first post of the “series” can be found here.

When they released the drug for the 3rd time, doctors had to require patients to meet the following conditions each year to remain on the drug.  The first is that they have to have an MRI of their brain yearly to look for signs of PML.  The second is that they have to have blood tests to determine if they are positive or negative for the JC virus.  Finally, they have to see their neurologist at least once a year to be reminded of the risks, and that the longer you are on Tysabri, the more likely it is that you will develop PML.

Having completed the first two requirements this summer, meant that I needed to see my neuro.  Not an easy feat considering I still can’t drive and his office is 2 hours away in Chicago.  Thankfully, my son in law said he would take me and spend the day with me.  (I really am blessed)

Z arrived right on time to pick me up.  During the two hour drive to the city, we discussed (debated) the pros and cons of Technology.  I will write more about that another day though.  Basically, I agreed to let him tell me about some apps that may make things easier for me, if he agreed to let me play devils advocate about the potential risks.  I think we both learned somethings.

The wait to see my doc was short.  He came to the waiting area and said, “C’mon Grace follow me”.  He didn’t notice my boot until, he turned around to see how I was walking.  (nothing like a having the pressure of having someone judge your balance as you try to balance) smh  He asked, “What happened now?”.  I briefly told him, he shook his head, and we entered the exam room.  We all sat down, and he said, “I was surprised to see you on the schedule, I never see you unless something is really wrong.  What’s going on?”  I chuckled, “just doing the yearly thing.”

First we reviewed the MRI of my brain.  There were no real changes to report, other than a little bit of atrophy and brain shrinkage.  (this also happens as we age, and was nothing major)  I did tell him about the newer symptom of “spins”, but only that I wanted him to put it in my chart, nothing else at this time.  He asked if I wanted to check disease progression in my spine with MRI.  (most of my lesions ARE in my spine)  I declined.

Next were the JCV test results.  The results were indeterminate.  (not negative or positive, literally indeterminate)  ok?  NEXT?

Doc: “You don’t want to talk about switching medications?”

Grace: Nope!  Thanks though

Doc:  “you do know that there is a new drug out  called OCEVERUS?”

Grace: Yep!

He began to shake his head again.  So I pulled the pamphlet out of my purse, and said listen Doc…let me be honest with you…. “I’m aware of the drug and the benefit of only having to have an infusion 2x a year, however at this time I’m just watching”.  I continued with:

  1.  I’ve done my stint as a guinea pig in the clinical trials for Botox
  2. It’s still too new, and carries the same risks as Tysabri.
  3. Basically the amount of time I “lose” getting this drug is the same amount I lose getting Tysabri ( Oceverus 2x a year 8 hrs each time vs.  Tysabri 12-13 x times a year 2 hours at a time)  Besides, I have a port in my chest that has to be flushed every thirty days regardless of whether or not it’s used, so it would be the same
  4. I also explained that I used my Tysabri infusion to meet my Medicaid spendown each month (but more on that another time)

He asked if the surgeon was going to send me to physical therapy after the boot came off.  I think I surprised him when I not only agreed to use a wheeled walker, (if Medicare will cover it of course) but that I would also like to go the PT, not only to aid my foot in healing, but to help with my balance and gait issues.  I asked HIM to write the prescription for both (pt and the walker) knowing that the likeliness of insurance covering both would be increased if they were given more reasons to approve it, (gait, balance issues, strengthening etc) than just “to aid in post op recovery”.  Isn’t it sad that it’s all a “game”?  Fortunately? for me I’ve been playing a long time.  SMH  We shall see.

Before I left, I did ask him for his opinion on the  various “diets” that are out there and how they may affect MS.  I know that I am not easy to “work with” sometimes, but that doesn’t mean I don’t want to do everything I can to fight this monster.  I just don’t believe that taking more drugs is the way to do it.

The diets I mentioned were the Wahl’s protocol, Paleo, and the Ketogenic diet.  I am not sure which if any I will follow, but I am in the process of learning about all three.  I have to admit that even a simple reduction in carbs and the addition of colored veggies to my to my normal SEE FOOD (see food and eat it) diet would be a good place to start.

Before we got up to leave, the doctor asked me if I would be willing to talk to other patients with MS.  I told him I do, all the time.  He was inquiring in more of a professional  capacity to which I responded that I was happy to  anytime, if he wanted to give someone my name and number, but never representing the hospital or his office.  (My use of the F bombs would disqualify me from that position.)

In closing,

The answer to the question of who is the boss…. I am!

It’s my body, my right, and my choice.

I am very fortunate to have a doctor that understands my feeling on this.  He also knows that while I do take some, I hate taking medications of any kind, and am always very reluctant to call, so when I do, he gives me priority.  I hope that if you are dealing with MS, or another chronic illness that you have found a doctor that is willing listen to and respects your opinions as well.

*The featured image is the inside of my daughter’s Beast for work….but doesn’t it make you wonder who is in control, or responsible?

A very LONG walk

I don’t know if I have ever talked about it before, but I used to be STUCK in a wheelchair.  It was 2009, before I started Tysabri Infusions.   I won’t give all the credit the that I am again walking to Tysabri, but it has been very effective at slowing down the frequency of my MS flares and relapses.  There was also a stay in a rehab facility and a solid year of physical therapy 3 x a week once I was discharged.  I have also been on Ampyra for, hmm I don’t know how many years as well.  (If you have never heard of it, Ampyra is known as the “walking drug” for MS.)

A few years ago, I had worked up to being able to walk for a full mile at a time without having to stop or take a break.  That’s NOT to say I wasn’t ‘down’ for the rest of the day, or that there were not a few falls ( and bone breaks ) involved, but I went from wheelchair to walking, and I was so proud of myself!!!!  I had even begun taking my dogs for my morning walk, until that ONE DAY!

When I woke up that morning, I didn’t really feel like walking, but if therapy taught me anything it was IF YOU DON’T USE IT, you LOSE it.  So I dragged my ass out of bed, brushed my teeth, coffeed, leashed the dogs, and headed out the door.

dogsWhen my dogs went through obedience and therapy dog training, they were each ‘assigned’ different sides, D. O. G walks on the left, and SNUFF walks on the Right.   (in the picture  they are reversed) I wrapped each of their leashes around my hands tightly, and would soon find out that I had made a HORRIFIC mistake in doing so.

Both dogs could sense that I wasn’t feeling well and weren’t behaving as well as they normally did.  (They were competing for my attention and walking under my feet.)  I was very grateful to be rounding the last corner of the block  (I was less than 200 feet from my front door)

The “Scene of the Crime”

sceneThis building was a barber shop, and the barber had come out to empty his trash.  When he saw me he waved and called “hello” as he did 100 times before.  For some reason, both dogs pulled in different directions and down I went…… literally something like this….

faceplant

I landed directly on my chin and was pulled/dragged toward the un-offending man while he ran back in the store.  (In his defense, he did TRY to come back out to help me up, but the dog’s seemed to have lost their minds when I fell and would not let him anywhere near me)

Somehow I got the dog’s under control and was finally able to stand up and limp home.  I made it in my front door, called out to thing 2 and immediately collapsed again.

(to be continued)

I don’t think I made it clear when I posted this, this was a couple years ago.  Sorry if I mislead anyone

 

 

 

 

NOT THE TUBE!!!!

By the time this post appears, I am probably already stuffed in the tube for my annual MRI.  Nothing new really, I’ve only had 40 or more, I should be a professional by now.  But Today is a First for me.  I am going to attempt to go in without being drugged.  Lately, I have been pushing myself to do things outside my comfort zone, you know like dealing with FEELINGS and shit….. :(,  So I figured why the hell not….?

Tonight (well now last night) Thing two looked at the dry erase board with all of our schedules on it.  She saw that I was scheduled for an MRI at 10 AM Friday, and asked who was taking me.  Like a proud 4 year old that learned to tie their shoes, I replied, “I’m going by myself.”….. The NEIGHBORS could hear her laughing……smh heh Thanks for the support kid!

I guess I should start at the beginning and maybe share some of my MRI tragedies with you.  The very first time I went in for an MRI was 20 years ago, when I was diagnosed with Multiple Sclerosis.  I had never even heard of such a thing.  The doctor explained,  “it’s just a glorified xray machine, but it will take much better pictures”.  If she was still in practice I would find her and let her know exactly how I feel about her bullshit explanation by placing my foot in her ass.   SMH….

So about 20 years ago, My sister in law and I show up at the hospital for my first MRI of my brain. I thought they were looking for a pinched nerve or something simple to explain the numbness in the left side of my body.

c spine coilI was 25 and had no idea that I was claustrophobic.  I laid down on the table and they put something that is called a coil around my head.

Coil my ass!  This thing felt like a vice and I couldn’t breathe!

While they were trying to calm me down, the doctor called down to say that she wanted a cervical spine and thoracic MRI as well with GAD otherwise known as Gadolinium for contrast.  This meant another coil and two more hours to the one I was already committed for.  The second coil looks like this.

head neck

Oh fuck no!  Although the coil is very lightweight, it felt like 100 lbs on my chest.  I started panicking  and hyperventilating before they even put me in the tube!!!!

Hey guess what…. I’m claustrophobic as fuck!!!!!!

They called the doctor back and told her I was being ‘uncooperative’, could they give me something to relax me?  After all these years, I still can’t believe I was the first person to ever freak out about being put in a tube, in fact I am positive that I wasn’t.  Seriously though, no warning!!!!

I don’t know what they gave me to sedate me, but I kind of remember climbing back onto the table, being “strapped down”, given a little “panic bulb” and being  pushed inside the machine.  I must have fallen asleep.  When I woke up, still inside the machine, I tried to squeeze the little panic bulb, but I had dropped in in my sleep.

I started yelling, and kicking the machine from the inside.  No one was coming!!!!!  My sister in law could here me yelling in the waiting room and came busting through the door yelling, “can’t you hear her in there, get her out!!!!”…. That is the LAST time I ever let anyone put me in an MRI machine without being drugged to some degree.

In fact this is the perfect time to share another MRI mishap.  It was 5 years and several MRI’s after that first bad experience.  This time I was going to be smart though…or so I thought…. I had scheduled the MRI for 6 am on Black Friday.  My thoughts were, that I would stay up the entire night before shopping and I would be so exhausted that I wouldn’t need as many drugs to go in the tube.  Sounds like a good plan right?

We went to Thanksgiving at my parents, did black Friday shopping, but I couldn’t stay awake.  The last time I looked at the clock it was 2 am Friday morning.  The next time I looked at the clock it was 11:30 am.  I started yelling at my husband, why didn’t you wake me?  I had to be at the hospital by 6 am!!!!  When I stopped yelling, he said, “Grace, you were at the hospital and you had your MRI, Honey it’s 11:30 on Saturday!”

NO fricking way!!!!!

My stomach was growling so loudly, so I went in the fridge to find something to eat.

veggie tray I found something like this with a section filled with turkey, another with sweet potatoes, and so on and so on.

When I finished stuffing my face, I told Ken that he his idea of filling the veggie tray with leftovers was brilliant.

He responded, “I didn’t do it, you did.”  “after we went for your mri, we stopped by your parents, you ate almost a full plate of deviled eggs, and filled this up with leftovers”

I have absolutely no recollection of anything after 2 am Friday morning.  Apparently, everything he said was true though.  Looking back, I Think I self medicated TOO much.  That’s the only explanation for it.

I really scared the shit out of myself with that one!

Since that time, I have learned better and SAFER coping mechanisms for being placed in the tube, but it has taken me years to work up to this.

  1.  I know how to disconnect the coil myself.
  2.  I only schedule one mri at a time.
  3. I do keep my eyes closed the entire time.
  4. I keep the music on very loudly in the headphones
  5. I “tie” the panic bulb around my hand
  6. I make the technician talk to me between each picture and tell me how long the next image will take.  (so I can break it down into 5 minute segments)
  7. and perhaps most importantly, I go to the same place with the same technicians each time, so I have developed a bit of trust for them.
  8. I know that if I can’t make it, I always have the option of LIMITED drugs

I hope to write tomorrow (later today) that it was a piece of cake.  I have to try!  MS is not going away, nor are the yearly MRI requirements to stay on Tysabri, so I might as well give it a shot.  If you are interested in learning more about my experiences, with Tysabri, please type tysabri in the search box, I think I have made several posts.

How do you deal with repeated MRI’s?  Any tips?

 

We must have a bad connection

It’s so easy to tell people “don’t over do it”, “take it easy”, “slow down”, or “don’t worry”.  I know it’s easy to say, because I tell people those things all the time too.

My brain tells my mouth to say it, and words come out.  For some reason though, my ears do not pass the message on to my brain.  (or something like that)  Something is definitely NOT working, the dots are not connecting….. smh

“Don’t over do it”, translates to

  • your pain is manageable today, you better get that done while you can
  • you don’t know WHEN you are going to feel this way again, so do it NOW!!!
  • fucking MS  smh
  • but you are SO close to being finished, just do one more?!?!?

“Take it Easy” translates to

  • It’s ONLY laundry, how hard could this be?
  • I will only make ONE phone call (never mind that you are going to spend an hour on the phone waiting for a live person)
  • or getting “pissed off” because NOTHING FEELS easy….grrrr

“Slow Down”, starts the process of

  • but there is so much to do
  • never enough time
  • but RIGHT NOW I feel OK

PART of it is MS, part of it is my personality.  I HAVE to make the MOST of each day!  I HAVE to feel like I am contributing SOMETHING to the world, instead of being a burden!  Some days though, I’m just bored or “stuck in a rut”  I feel that pushing myself and pushing my limits will make me FEEL more alive.

I take the GPS estimated time of arrival as a time trial challenge.

time to beat

So for those of you that also struggle with this “disconnect”, how do you manage this?  How do you “slow down” and not overdo it?  How do you try to “save” your energy for later?

I have heard (and said) that I should Prioritize and focus on One thing at a time.  Ok, here goes, my main goal is to be able to Walk down the aisle at my daughter’s wedding next weekend.  My eye is on the prize so to speak.  I have set up my week with one thing each day and tried to space the “working days” in between the “recovery days”.

Monday

I have my Tysabri infusion at 9 am.  Because I know that I will be “wiped out” for the rest of the day, my mom is coming out to drive me and take me home afterwards.  That’s it!  That’s my whole day.

Tuesday

I am installing 5 electrical outlets in my house.  Since most of my furniture is just kind of piled in the center of the rooms, now is the time to do it.  While I have pulled wires, and connected outlets for years, I do still need help.  My dad is available to help me before his surgery, which has been rescheduled for March 20th, so now is the time.  Unfortunately, this will involve some more climbing in my attic.  Definitely a Working day.

Wednesday

I am getting my nails done for my daughter’s wedding.  I haven’t done this in years, but if memory serves we correctly, it is a somewhat “lengthy process”, meaning forced RELAXATION time.  If I am able to “lose the boot” as planned, maybe even a pedicure?

Thursday

One Doctor’s appointment with my chiropractor to try to adjust any “damage” I might have caused my body over the week.  I have to pack for the out of town trip and that’s it.

Friday

Out of town for the wedding!!!!!

So there it is.  I have prioritized.  I have planned minimally, allowing myself several rest breaks, and I have “my eye on the prize”  Wish me luck?