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……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

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 …..


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 😦