Decisions, decisions, decisions

I can’t tell you how many times or with how many different people I have had this SAME conversation. This time something changed.

I have been on Tysabri for almost 13 years. That is means close to 140 infusions. I don’t know the exact number, but I’m pretty sure Biogen (the company that makes the drug) could give you an exact number, as well as my JCV number, how many lesions I have on my brain and spinal cord, etc.

Facts we know:

1. The longer you are on Tysabri, the more likely you are to develop a deadly brain virus called PML. Because of this, most doctors only prescribe Tysabri for a few years before recommending a different drug.
2. While on Tysabri you have to have blood tests for the JC Virus every 6 months and an annual MRI to monitor your risks for developing PML.

Two years ago, not only did I test positive for the JC virus, but my numbers were quite high. (1 is bad, I was at 3.43.) My neurologist suggested that I consider changing to a different MS treatment. I refused. Tysabri has been a miracle drug for me. (Many posts about it) I did however agree to more frequent JCV testing and MRI’s. I am supposed to go every 4 months, but I haven’t because….well life.

Over the next 6 months, my JC numbers continued to climb to 4.69, so I made what I feel was another concession. Instead of getting an infusion of Tysabri, every 4 weeks, I would allow them to extend the time between doses to 6 weeks. (Personally, I hate the longer time in between infusions, because the last 3 weeks are “slump weeks” for me, but my numbers have stopped increasing.) They are still high, but haven’t gone up, so that’s a good thing.

This last year I’ve noticed that I am more fatigued. I have trouble finding the right words and expressing my thoughts, and my legs are heavier and painful each night. I have been shrugging it off, and attributing it to the longer intervals between Tysabri infusions, the fact that I am getting older, and the additional stresses in my life. (taking care of my parents, covid, and dealing with people in general) , but my last MRI shows that I have new lesions in locations that correspond to my symptoms.

The entire time I was taking Tysabri (at 4 week intervals), I had no disease progression or increase in lesions. (Apparently a six week dosing schedule does not prevent relapses for me) The medical community considers the risks of pml too high for me to go back to a 4 week schedule, so maybe it’s finally time to change?

I’m scared that I am going to start having frequent relapses. I don’t want to go down that road again.

Before Tysabri, I was in a wheelchair. I know it’s not the end of the world, but still. I was severely depressed and was being hospitalized for MS flares approximately every 3 months. Not the kind of life I wanted to live.

I am also pretty scared of some of the side effects of the other drug options available. 😦

I come to wordpress when I need to “get out of my head”. Thank you for allowing me to do that, and reading along. It helps to not feel so alone.

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Just the facts please

I know I promised to write the truth, the whole truth, and nothing but the truth.  I am working on it, but first I want to share the tips and information that I learned during my adventure, so here are the facts.

In my last post, I gave the spoiler alert that it IS possible to go from the suburbs of Chicago to Chicago via the Metra train, and from Chicago to Holland, MI and back via the Amtrak train, while remaining in a wheelchair.  Did I do it?  Kind of….

Here’s the story…..

My FIRST challenge of the day was trying to figure out how to fit the wheelchair in my car. It does fit in the trunk WITHOUT the legs on it; however, there is no way that 2 wheelchairs, “T”, and my parents and I would all fit.  Although I had access to a car that would fit both wheelchairs, I did not know if “T” would be able to transfer into the other car since the seat was higher than mine.  I worked this out removing the legs of my wheelchair, and making my mom stay at home.  (she was disappointed)

First Piece of advice—Know your equipment.  It’s size and how it works.

We arrived at the Metra station almost 25 minutes early so I could survey the area. There was some confusion as to which track the train would be departing on, (the signs said one thing, and the map said another) but since I was getting on at the end or beginning of the line, (however you look at it) there would be time to change platforms if needed.

The sign says the opposite track

I opted to stay in the shade by the building rather than to cross to the side the sign advised.  (Yay I picked the right one) 

 

 

When the train pulled into the station the ADA symbol for handicap accessible was clearly marked on the car.  What wasn’t clear was how I was going to get UP onto the train…

 

 

That question was quickly answered by not one but two of the conductors that got off the train to welcome me.  I must of looked nervous when I told them this was my first time traveling in a wheelchair, because they were both very quick to assure me that it was very easy and I would be an old pro, by the end of the trip.

I didn’t think to take pictures or a video of the lift at this point because I was too busy soaking it all in.  They were right though, it was easy.

I rolled right off the lift ramp to a section of pull down seats for seniors or people in wheelchairs.

If there no one was using the seats, cyclists were able to park and tie down their bikes in front of them.

(There was a sign that clearly said they may be asked to move them if someone needed to use the seats)

I opted to stay in the wheelchair with my back to the wall of the car.

 

The bathroom was immediately to my left.  It also was wheelchair accessible, complete with a transfer seat and multiple safety bars.  I can’t speak for the position of the bars etc, as I mentioned in my last post.  I pulled as close as I could get, stood on one foot, and pivoted.  The location of the bars worked for me. 🙂

Getting INTO the bathroom was no problem.  For ME though, getting out proved to be a different story.  Again, the damn legs on the wheelchair….smh   Let me repeat that first piece of advice…. Know your equipment!!!!  I took the legs off the chair and maneuvered out of the bathroom wondering how I had gotten in there in the first place…

Check out the legs on this baby

From the front, they don’t look that cumbersome, but the side shot shows that with the legs attached, my wheelchair is as long as the kitchen table.

The train ride itself was smooth and a bit nostalgic for me.  Although a lot has changed since I rode the train to college in Chicago 20 years ago,  (they now have a rush hour QUIET car instead of a BAR CAR). The stops and sounds of the train were the same, but the scenery was so different.  I had forgotten how many times the conductors punch tickets, and that they called out the upcoming stop.

I spent most of my time talking to one of the two conductors and “people watching”.  There was a tiny altercation between two of the cyclists because one dumped the other’s bike while trying to retrieve his own, but it was over quickly.  In fact, if I made any recommendations to Metra, it would be maybe a bike rack instead of stacking, but who am I?

When the train pulled into Union Station, I waited until 90% of the people were off the train before heading for the door.  The conductor set up the lift for me, which again went very smoothly until I tried to roll off.  The “gate” that keeps you from rolling off the lift was stuck and neither of us were really sure how to operate it.  Eventually it opened and I was on my way.

Second piece of advice- allow extra time and be patient.

Rolling into the station was a work out for my arms, but it was doable.  I’m glad that I waited until the train was almost empty, because I didn’t feel rushed as I SLOWLY rolled inside.  I had plenty of time to go outside, find something to eat, and explore the different levels of Union Station.  Although all levels of the station could be accessed while in the wheelchair, the “general” signs were vague at best.  (in my opinion)  Several times I would follow a sign to go somewhere and end up at stairs or an escalator. 

If I wasn’t able to backtrack on my own to the nearest ramp or elevator, there were plenty of people to ask for directions, both travelers and employees.

Let’s talk about ramps for a minute…. First of all…..

THERE ARE MANY!!!!

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The more I used them the steeper they began to appear.  I was literally chanting “I think I can, I think I can” as I was climbing up the last few.

Believe it or not, going DOWN the ramps gave me more trouble.  I NEVER thought about the rug/wheel burn on your hands going downhill.

*Advice alert*— If you are “driving” a manual wheelchair….WEAR GLOVES!!!  Apparently they sell finger-less gloves for exactly this purpose.  Bonus tip- carry hand sanitizer with you, my hands were black…..

A visual reminder to wear gloves

For the most part, even though everyone was too wrapped up in their own objectives to notice things that were happening around them, only a small number of people almost ran into me.  Those that did were quick to apologize.  Except  for the girl that turned on a dime, and tripped over my legs in the process, causing her drink to go everywhere.  I’m going with… Karma…she didn’t even apologize….smh.

I found that if I followed somewhat closely behind someone going in the same direction, even though people didn’t see me, they had already sidestepped the person they could see in turn missing me.

As I waited in the “assisted waiting area” I received a call from “T”.  She yelled, “This hotel is NOT going to work!  I can’t even get into the bed it’s too high.” I responded, ” UM what do expect me to do about it?”  Followed by, ” Ok, then look for another hotel in the area.”  I know that I said I would tell the truth, the whole truth….. but I would have to write an entirely different long winded post about the rest of that conversation.  In short though, I told her I couldn’t help my train was boarding and to let me know what she figured out.

Boarding call for Amtrak 370 from Chicago to Holland Michigan

Although their website says “Redcaps” (people employed by Amtrak wearing red shirts) are available EVERYWHERE to help people with mobility issues and with luggage, the first time I actually saw them was standing right in front of the platform.   In fact, they were all in my way, barely moving as I rolled out to the platform.  I am glad that I had the foresight to figure out how to my carry a bag myself because no one was eager to assist.

*Advice alert*  pack only what you need and/ or can manage on your own

I rolled down the platform until I saw a conductor who told me where he would be setting up the lift.

Boarding with the lift was a piece of cake until I tried to fit through the door.  DAMN legs….grrr.  Once I took them off it was no problem.  Handicap seating was immediately inside the door of the car, on both sides of the train.  There was even a luggage compartment on the floor that I could reach.

Once the train departed, I decided to sit on the Amtrak transfer seat instead of the wheelchair seat.  I shouldn’t have.  While sitting in said seat I was traveling backward.  It took no more than 20 minutes for me to remember why I don’t do backward.  Yes I hurled :(, but yay I made it to the bathroom. 🙂

Once that nasty business was finished I tried to roll to the Bar or cafe car for some ginger ale, only to find out that the wheelchair would not fit.  It was close.  😦  Plan B.

I thought I would try to distract myself from my stomach unhappiness by posting an update on my Facebook page, msgracefulnot.com.  I did not expect to see this video appear. …… and the flood gates opened…….  (If you are new to “my world” the video is of my recently deceased GSD, SNUFF.)  Back to the bathroom.

Round 3

I sent “T” a text to see what she decided to do about the hotel.  She called instead of texted me to complain for 20 minutes.  Her friend helped her into the bed  before she left, and we would indeed be staying there.  I said, “Okay, see you at 11” and hung up the phone.  As I sat there reviewing the days events in my head, I decided to walk to the Bar car.  Yes I WALKED to the cafe and justified it by telling myself that I wouldn’t “learn” anything else for the next few hours anyway.  I would just resume my test when I was going to detrain, disembark, get off…not sure what it’s called.

When I entered the bar car, I was informed that the closest thing they had to ginger ale was CLUB SODA.

Never having tried it before I decided to give it a try.

It is NOTHING like ginger ale……. ewwww  😦

After I returned to my seat, I stopped the conductor as he passed by to see if he would mind answering a few questions for me.

He didn’t mind.

I briefly explained my “test” and told him that I was not able to fit through the aisle with my wheelchair to go to the Cafe Car.  I asked,  “What would someone in my position do, especially if they were on a longer ride than me?  He responded, “Well people in wheelchairs generally don’t travel alone.”…. My FACE said, “and then you met me.”  He said if someone needed something from the CAFE, he would happily get it for them…. shrug ok?

I have several suggestions for Amtrak should they ever decide to update their handicap accessibility information.  Cafe access is on my list, if I ever do send them my suggestions, I will provide a link here if that happens.

My conclusion of whether or not the trains are accessible for wheelchair travel is Yes, they are.  I am not saying that it is easy or super convenient, but it is doable with enough planning.

2000 words already?  I have only just begun….smh  I am going to end here for today.  If you are interested in hearing about all the dramatic parts of the trip, please check back next week where I will tell you about the drunk guy harassing me, how I broke my finger, and why I almost missed my train on the way home.

Thank you all for spending your time with me.  Maybe some of the information I share is useful?  I appreciate all of your comments and feedback!

 

 

 

No Pole Dancing Here

As I begin to write, I’m stuck on a name for this post.  Officially it should be No Good Deed Goes Unpunished Part II, click here for part one ,but as I am thinking about how my “I only have ONE doctor today, so I am going to spend the rest of the day relaxing day”, turned into time at the Village Hall, a police report and a call from my State representative’s office regarding that damn utility pole issue, I am at a loss for what to call this post.  Mi vida loca? Don’t visit your daughter’s house?  Keep Walking Grace etc etc.  Oh and I should probably mention that in all that chaos, I never even made it to the doctor’s office.  I forgot to call which is so uncharacteristic for me they called me three times to see if I was ok…..SMH

So yesterday morning, as I was having my coffee, fantasizing about my relaxing day, I remembered that my daughter had an important meeting that afternoon.  I thought to myself, “I should call and amp her up for this”.  I knew she was nervous about the meeting, and it might be helpful to try to boost her confidence.  Then I remembered who I was talking about, my kid?  she wasn’t out of bed yet.  If I called her, she was gonna to first yell at me for waking her up.  Next she was going to say “I KNOW MOTHER”. and so on and so on.

Ok Plan B.  I would instead call her neighbor (my old neighbor and walking buddy) to try to convince her to take a walk outside in our barely above freezing temperature weather with me.  (ANYTHING beats walking on the treadmill and you only live once right?)  Fortunately for me, she was game.  Ok maybe unfortunately for me, because this started the ball rolling.

I sent my kiddo a text explaining that I was going for a walk with “L” and that I was going to pop in while I was in town if that was ok.  Surprisingly she responded OK, (better than K or FINE MOTHER) and I headed out the door.  I parked in my old driveway, headed over to L’s and we started to walk.  While walking we played the “quick tell me everything that has happened in your life in the past 3 weeks game”.  ( I really have to work on keeping in touch better)  Finally the conversation turned to Frontier.  She explained to me that she had called the utility company 4 different times and they had sent out 4 different people to “access” the situation.  Each time a new person came, they brought a bigger truck, but no one actually did anything. HUH? WTF?!?!?  When she was done telling me about all the calls, and looked at me with pleading eyes, I blurted out…. “Do you want me to take a turn, or carry the ‘ball’ for a little bit?”

L was MORE THAN EAGER to hand me pages of notes, ticket numbers etc.  We finished our walk, I wished her well on the road trip she was taking that day, said hello to my kiddo, gave her a quick but unnecessary pep talk, grabbed my phone to take some pictures and headed out the door.

As I walked around the house, trying not to trip on the wire that was hanging down, this is what I saw…… As I got closer, I realized the wire on the right seemed to be the only thing holding the pole up….. um that wire is connected to MY HOUSE.  MY house is holding up the pole?!?!?!? UN NO!!!  (my house, my daughters house same difference… long story for another rant)

Now I was pissed!  Seriously?!?!??! While Frontier was out doing “nothing” they couldn’t have at least cut the phone line so it wasn’t damaging my house?!?!?  I was going to call them right then and there but hey guess what….only 16% battery left on my phone…..argh.   (I had a brief thought that I should get a landline since my cell phone battery is always dead, but I assure you it would never be from Frontier)  Instead, I would go home, charge my phone for a bit and call frontier from my couch.

As I left my old house, I had to drive by the Village Hall….hmmm wth…”maybe they thought I was exaggerating when I had originally called about the line?”  I decided to stop in and show them pictures.  Yah Yvonne was working again, and she did remember my original call to their office.  I insisted that she look at the pictures on my phone before my battery died.  When she saw them, she admitted that it was worse that she had imagined and was surprised as hell that no one had done anything.  She asked me to email her the pics and she would see if she could help.

I put my phone on the charger while I was driving home.  (I finally had enough battery to email the pictures but probably not enough yet to fight with Frontier)…… As I sat watching the phone waiting for it to charge ( yes the whole watched pot thing) , it occurred to me that someone was going to have to fix my soffit.  I wasn’t climbing on a ladder again to do it.  Shit this probably meant a homeowner’s claim etc etc. Which would probably mean a police report needed to be filed……OMG!!!!  So much for the relaxing day.

I called the non emergency number for the sheriff, where the operator advised me that yes I should file a report, but I would have to be at my/ my kiddo’s house to do it.  Fine Fine…back in the car…. I let my daughter know the police would be coming and what I had transpired. (she wasn’t suprised)  I let my old neighbor know I would be coming back by if she wanted to add anything to the report.  ( she just laughed and laughed)… Ok well I volunteered right?

When the officer arrived and we were walking around the side of the house, he literally pulled me back to keep me away from a possible live wire.  I couldn’t resist, and reached out and grabbed the phone line, telling him “don’t worry it’s JUST A phone line.”  The look on his face…. PRICELESS.… but I digress….

The officer accessed the damage and identified all of the utility lines and then informed me he couldn’t take a report for property damage because there was no criminal intent…… You have got to be kidding me?!?!?!??! 

What about negligence and and and?!?!?  When I stopped ranting I realized he was just standing there smiling at me.  He couldn’t officially file a ‘property damage’ report, but he COULD and WOULD be contacting Frontier himself insisting that this was a hazard and they needed to come out immediately.  (ok ok touche, he got me back for grabbing the line)

The officer sat in my driveway making his phone calls. ( I guess snuff is pretty scary looking, especially when I am stressed)  He gave me a ticket number, follow up phone numbers, and his word that someone should be out soon, since he had declared it an emergency.

I still had an hour before I had to pick Einstein up from work, so I chatted with my daughter’s boyfriend for a bit, and then received what I thought was a telemarketing call from IL Representative so and so’s office telling me that the Village had filed a claim against Frontier and that they would be stepping in to handle this.

SHOCKED EXPRESSION PICTURE HERE!!!!  (I’m sorry I am really to tired to search for one), but I will update this when I’m feeling better.

I think I am still kind of shocked.  I never expected this to get this big.  Seriously?!? Someone finally heard me?!?!?  It’s only been a month!!!!! snarl grrrr etc.  But someone who could actually get something done was getting involved?!?!?!?  Wow! Awesome!!!

I drove home feeling ecstatic.  (Ok exhausted but ecstatic too.)  I had the best intentions of writing an incredible blog post, about another adventure and the fact that there are good people in the world, and the squeaky wheel…something or other, and and and….. but I crashed….. I fricking hate slump week!!!!!  Oh well there was always tomorrow right?

So today is “tomorrow”.  My old neighbor said the pole still looks the same, but the State Representative’s office called to tell me, that it would be resolved today.  She really is a great lady.  She made sure I had her email, phone number, alternate number etc.  It still surprises the hell out of me when a complete stranger goes the extra mile just because.  Over the next week, I will have to write a Thank you letter to her, because she was so helpful, but for now I wait.  We shall see.  Now I am all done writing and I still don’t have a title for this post…..Any suggestions?  Please?

The patient suffers when insurance plays doctor

It’s 3:45 in the afternoon here.  I had a very relaxing day and A FEW POTS of coffee with a friend today.  We literally sat at the kitchen table and drank coffee for hours.  While the fact that I sat still in one room was probably very relaxing for Danica, ( she didn’t have to follow me room to room as I fidgeted) it just dawned on me an hour ago why I was able to sit still……

SLUMP WEEK has begun 😦

What makes it worse, is knowing that this week it is going to get worse, because I have to wait an extra week plus to get my infusion of Tysabri.  Yah Holiday stress and Slump week combined…oh joy.  For those of you that don’t know what slump week is or haven’t heard the expression before, I have written about it in a previous post here. Defining Slump Week Tysabri.

So why do I have to wait an extra week for a medicine that I am supposed to receive every 28 days? Because …..

The HEALTHCARE SYSTEM IN THE UNITED STATES SUCKS

For those of us that are considered “Disabled” by the government ( well by doctors and then the government) Medicare controls our lives.  Medicare gets to decide what kind of care you can receive and when.  Makes complete sense doesn’t it?  HELL NO!!!  A group of individuals that are not doctors, and who have not and will not ever meet or see me, get to decide WHEN I can receive treatment for Multiple Sclerosis.  I call bunk, bullshit however you want to describe it.

With the new year coming we all have “deductibles” to meet before any of our medical care is covered.  I get that part, kind of….Maybe for people that do not have a chronic or incurable illness, but for people that rely on medications and treatments just to get up in the morning or be able to function at all it makes no sense.  I have still not actually gotten to my point though.

My last infusion was December 1, 2017.  I schedule my appointments for as close to the first of each month as possible, because in addition to meeting a yearly deductible, I personally have to meet a monthly deductible before Medicaid will consider paying the difference.

The hospital bills Medicare $34,978.93 EACH MONTH for my Tysabri Infusion.

Yes that is almost 35,000$ a month…..NOT A TYPO

After Medicare pays their 80%, or negotiated rate, the copay of $1183.52 is billed to me… Heh what the hell that’s pocket change right?

Not to me!!!!! and not to most  people that are unable to work because of an illness.  Hell I don’t think that is pocket change to anybody….. So anyway, this is where Medicaid comes in.  Each month after I meet my Medicaid spendown of medical bills, which for the record is $380.00 a month, Medicaid will review the claim to pay the difference.  Do you see why I have to have my infusion on the first of the month?  I’m sorry if I haven’t been able to explain it well, it honestly makes no sense to me.

So if I were to go and get my Tysabri Infusion on Friday when I am due for it, I will not be able to get it again until January 19th of next year.  It will take them how many months to process all of the claims while I WAIT to have insurance?!?!?  This does not cover or include any of my prescriptions which average about $2800.00 a month, or physical therapy, etc etc etc.  Basically it sucks.

I know that there are people that have it worse than me.  And I know that slump week will pass, but it is definitely here now.  I will spend the next week as I am now, READY FOR BED at 4 pm in the afternoon (ok its actually 5, but that’s still pretty early). In pain, with worsening symptoms. I don’t allow myself to make important decisions while I am living in a daze from the cognitive fog, so no blogging until next year?  I don’t know.

So I want to take this opportunity to Wish Everyone a Happy Holiday and New Year.  I also apologize in advance if it takes me a bit longer than usual to respond.

Being sick sucks 😦