Category: Advocate for yourself

No Pole Dancing Here

~ msgracefulnot ~ 17 Comments

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……pic 2 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)

pulling off my soffitNow 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

~ msgracefulnot ~ 9 Comments

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 😦

My decision to start Tysabri Part 5 of 5.

~ msgracefulnot ~ 4 Comments

In February of this year my doctor said, “Hey your MS seems to have been pretty stable for some time now, I know you are JC neg, but you’ve also been on Tysabri for about 8 years, why don’t we look at switching you to an 8 week cycle?”

W H Y ? ! ? ! ? ! ?

The long and short of it……

“Someone, somewhere” said “The longer you stay on Tysabri, the greater your odds are for developing PML or the JC virus.  Tysabri stays in your system for 8 weeks anyway, why not get fewer treatments, so you can continue to receive the drug longer?”  Blah, Blah, Blah.  (I hope you can tell by the tone of my writing, I feel and FELT this was a very bad decision for me.)  What the hell do I know anyway, I’ve just been living with MS for 20 years?!?!

Reluctantly, very reluctantly, I agreed to switch to a 6 week schedule.  I would compromise by stretching it out two more weeks, but would not agree to stretch it to 8.  For the first time ever, I experienced what people refer to as “slump week”.  As I sat here trying to define “slump week” for you, I decided to try to “Google” it for kicks.  I typed slump week, and the search finished it for me slump week tysabri with pages and pages of listings.  Heh, so I’m not alone.

For me specifically, I describe “slump week” as all of my MS symptoms worsening.  I didn’t get new symptoms, but the fatigue I have DOUBLED, as did the amount of time I spent sleeping.  I had a harder time focusing.  I felt like each of my limbs had gained 30 lbs, and I spent week 5 on the couch. NOT FUN!

In June, 4 months later, I was at my niece’s wedding in Georgia and I suddenly couldn’t raise my toes on my left foot.  In fact, the only way I could walk without tripping was to try to lift my entire leg from my hip.  (visualize marching?)  I don’t have that kind of strength in my hip, leg, or foot, and I fell 4 times that week before I could get home to Illinois to see my doctor.  I also developed sciatic pain down the right side of my body.  While they say this is not related to MS, I have to disagree.  My body certainly did not like the additional sitting I had to do, or the weird way I was having to walk and it was letting me know with all kinds of new pain.

I spent the next 2 months getting MRI’s, seeing a neurosurgeon, (you know it must be the displacement of my spinal cord from 7 years ago) going back to physical therapy, and eventually being fitted for an AFO for foot drop.  I was angry, depressed, or sleeping all the time.  Wearing the AFO, helped me not trip over my foot, but it caused my calf muscles to spasm daily.  Yah more pain!?!?!

ENOUGH was enough!  Time to put on more armor and fight!jousting

In August, I told my neurologist that I didn’t care what “someone somewhere” said.  I wanted to be on Tysabri every four weeks.  It works for me.  Stop trying to fix what wasn’t broken!  I am very angry with him still ,and I do blame the length between doses as the reason I feel I have regressed.  I know, logically, the heat could have affected me, as could all the “family time”, but my gut says it was the schedule change of the medication.

I have received 2 doses at the 4 week interval again, and I am due for the next infusion  next week.  I am seeing a chiropractor biweekly, and I’ve made it a goal to walk on the treadmill every  day for at least a total of a mile.  (which I have done every day for a full two weeks) I am not “back to where I was” in February, but I am working hard to get there.  One step at a time.footprints

 

 

My decision to start Tysabri 3 of 5

~ msgracefulnot ~ 1 Comment

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
~ msgracefulnot ~ 6 Comments

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.