They call it the flu.. I call it fucking life up

I’ve been through a lot in my life, is it possible that I have never had the flu before?!?!  Maybe I caught some special breed of this monster?  Whatever the hell you call it, it seriously fucked me up.

As many of you know, Thing 1 Got married on March 10th.  We went out of town for her wedding on the 9th, and from the moment we walked out the door the entire weekend was MAGICAL! (I have pictures and video to prove it!) Literally EVERYTHING was perfect.

At 6 am on March 11th, I closed the door to our hotel suite saying goodnight to the last “after party” guest.  I climbed into bed next to Einstein and smiled.  Our princess really was a princess!!!!  What a wonderful weekend!

Did you know that today is March 20th?  Trust me it is!  ( I have checked the TV, the Computer, and my phone 3 times)  How the hell did this happen?!?!  10 days!!! I have “missed” 10 days!!!!  Where the hell have I been?!?!?

Again, they call it the FLU.  Oh I’ve got some words for it, but autocorrect keeps changing what I say into “#$^$#^@#$(%$)”  I keep trying to fill in the ” missing pieces”, but I can’t believe it’s been 10 days.  Where the hell have I been for 10 days?!?!?

The answer is Horizontal. Drugged, in a daze etc.  Apparently, I caught the flu and it literally kicked my ass or fucked life up.  I remember arguing with Thing 2 about going to the Emergency Room.  (In hindsight, Never have I been so grateful that she doesn’t take no for an answer.)  The fever that I had been fighting reached 104, my oxygen sats were in the 80’s, and I got dehydrated.  I’m home again and I today I am vertical, but that’s all I’ve got for now.  I have a feeling this is gonna be a long road.

My One thing box…. so DOING IT WRONG…..

A few months ago, the LAST time I almost had a “mini mental breakdown” from trying to be superwoman ( GRACE, the damn costume does NOT fit) a really great friend of mine said, “Damn it Grace, will you just slow down?!?!? Focus on ONE THING, just one thing at a time!!!”  “Yeah, yeah” I replied. ” I got it. (as I added 20 more things to my to do list)

We finished our conversation and she said, “I’ve got it!  I am making something for you.”  Ok?  I didn’t really think much more about it…..

A month later, a box arrived from Florida, ( I live in Illinois)…..hmmmm Not medical supplies, (they come from Texas)…. Not my prescriptions…(THOSE came LAST week) too big of a box to be more bills ( besides that, medical collectors like to use big flashy envelopes so that all your neighbors know you are a slacker)

light bulb over your head Duh, Florida!  Bones is from Florida!!!!!!!! tiki doll

She said she was sending you something…..

My mind went back to what I THOUGHT was our last conversation in which we had talked about going thrift shop shopping for an ugly “tiki like” statue.

The side story behind the “Tiki statue”.

Although I have “known” Bones for almost 3 years, we have only ever “hung out” (in person) two times.  I live in Illinois, she lives in Florida.  We “met” playing an online game on facebook, and it was over a year of talking on the phone, skype etc before we actually met in person.  She was supposed to come stay with me for a week in Sept. of last year, even had purchased her airline ticket, but Hurricane Maria hit the day she was supposed to fly out. 😦 So the trip was cancelled.

We tried to find time in our schedules to pick another day, but with the holidays coming and my daughter’s upcoming wedding, we decided to wait and try again next year.  To hold ourselves “accountable” we agreed to purchase the ugliest statue that we could find to be left at the other ones house.  The only way you could get rid of the statue was to “deliver” it in person to the other one.

So back to the package…..

Why was she sending me the Tiki package?  That wasn’t our plan.  We were going to pick one out together…..  😦 and it was supposed to be HAND delivered or retrieved…. Hmmmm well I’m just not gonna open it!  😛

The box sat by the door for 2 hours before Einstein pestered me enough to open it.

I’m glad I was sitting on the floor when I did.  Fucking tears came out of no where.  When I opened the box this is what I saw…..

She had HAND MADE me my very own “One Thing”  box to remind me to….. SLOW THE HELL DOWN!!!

Who knew that this woman that lives more than 1000 miles away from me, that I met playing an online game, would become one of the best friends anyone could ask for?!?!?

The box is not only a box to collect my to do lists.  Bones did research on why I use the ORANGE ROSE as my blog picture.  (Orange is the color for MS awareness and I printed the rose on our 3d printer, when I was feeling especially blah one day to remind myself that there is still beauty in the world)  I know….. cheesy, but it works for me.  She found images of butterflies, which I didn’t know also represent MS awareness.

Inside of the box she taped the picture of me skydiving that I had posted on my newly created blog’s welcome page.  She included cut out One Thing “tags” with a letter explaining that how I was supposed to use this box. She said, ” This is for your LONG list of To-do’s, but…. BUT you can ONLY place ONE task on each piece of paper.”  Of course there were more “rules”, but you get the gist?

Well I’m still doing it wrong……

right way

wrong way

I THOUGHT I was doing it right, but I was writing tags like the ones on the left, when I probably should have done more like the ones on the right.

Just because the words fit in the box, does not mean they will fit into a day!!!!…smh

Plan BOSTON?!?!?  Seriously what the hell was I thinking?!?!?  Yep I’m gonna plan a trip with 3 other people all by myself in one day! Doh! I tried, I reached out to everyone to confirm airline selections before booking. I couldn’t reach anyone, but outgoing messages were sent.  So let’s start with cleaning the house.  I probably should have chosen to vacuum OR dust OR laundry instead of tackling all of the rooms and all of the chores at once....but but…the tag said ONE thing…. and I only wrote ONE THING!!!  CLEAN THE HOUSE!!!!!

I did manage to make a lot of progress on the lists on the left, but didn’t actually finish anything except for cleaning the house. ALL OF THE LAUNDRY washed, dried, folded AND put away!!!!  All the dishes, vacuuming, dusting, and I even washed the floors and cleaned the bathrooms.  As I laid down, (passed out) on the couch, utterly exhausted, I looked at the vacuum cleaner that I had neglected to empty or put away, and started the next day’s list….

The next day…..

I laid on the couch all damn day and most of the next….I was in so much pain.

WHEN will I learn?!?!?!?

I really don’t understand why I push myself so hard.  smh I’m sure it has something to do with no longer being able to work outside my house, and self worth and all that, but I KNOW I will PAY for it later, yet I keep doing it.

Definition of Insanity: doing the same thing over and over again and expecting different results.
Read more at: https://www.brainyquote.com/quotes/unknown_133991
Thank you all for listening to me ramble!  (WordPress is cheaper than a shrink)
Anyone have any ideas why I’m always in such a hurry to get EVERYTHING done?
Bones?  Have I told you lately that I love you?!?!? ( get that song stuck in your head)
I never dreamed that this blogging adventure would lead me to so many supportive people and new friends. 🙂 I’ve had the time of my life 🙂 🙂 🙂

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 🙂

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 😦

Slump week- Having a bad day

Have you ever had one of those days where everything that could go wrong does?  You are so utterly exhausted by the end of the day, you can’t wait to crawl into bed and hide beneath the covers for the night.  THAT is what slump week Feels like, but the difference is that you wake up feeling that way.  Who wants to get out of bed then?

If you are going through slump week, it’s important to remember …

This Too Shall Pass.

As I was trying to think of analogies to use to explain slump week yesterday, I came up with a list of things that make most people very uncomfortable or that they dread doing.  If you are trying to explain what slump week is to someone and are at a loss for examples, use one of these?  Just remember to explain that it’s the FEELINGS, that they experience, it doesn’t mean any of these things will happen.

  • Starting a new job, and being at the bottom of the totem pole.  Not knowing the jargon everyone is using and feeling completely lost.
  • Putting away groceries in someone else’s kitchen
  • Having to call an automated phone line and after pushing 32 buttons finally reaching a live person that doesn’t speak your language, or being disconnected, or told you’ve reached the wrong number.  Now repeat!
  • Writing a 2000 word essay or blog post but forgetting to hit save.
  • Trying to start writing again and losing electricity, or internet service
  • Going to a friend’s house to borrow their computer, and they have a MAC when you are a Windows Pro
  • Finally figuring out how to use their Mac, retyping your work and forgetting to hit save again
  • Deciding you need a vacation, packing for a weekend away and not realizing until you arrive that all the pants you packed are your significant others (who is 2 sizes smaller than you)
  • While you are on vacation, wearing the only pair of pants that fit you, needing to use the bathroom in public, and the only person to ask where they are located doesn’t speak English.  While charades can be fun, it is not when the pee is already running down your leg.

I know that this list is not all inclusive, but as I said it’s a start.  Maybe it will help you think of an example to describe the feeling behind slump week.  Maybe it will help you realize that everyone has “bad days”.  Maybe, hopefully, it brought a smile to your face.

Yesterday was definitely a slump day for me.  (Yah IV on Wednesday)  By noon, I wanted to crawl back in bed and I had only been awake for a couple of hours.  I thought taking a  shower might help me have a better outlook on the day.  (I needed to shave my legs anyway and then I could say I accomplished something for the day)

So imagine this…. you are me….

Once you get in the shower, you realize you don’t have shaving cream.  Ok, you will make do with soap. Crap you forgot to change the blade on your razor (or forgot to bring it with you in the first place.)  So now you have to get out of the shower (yes you already got in and had the water running), but you forgot to grab a towel and the bath mat is in the washer…… you carefully navigate across your tile floor to the drawer where you keep your razor blades , change the blade and get back in the shower.  Only to realize, Yes your forgot your towel again.  SMH.  Again, frustrating but manageable.

If you have a SMH (shaking my head) moment you would like to share, please do!  I love meeting and talking to new people.  (It helps you not feel so alone) 🙂  Also, feel free to add my on Facebook if you want to hear more.  Remember, I am Graceful….not! (Grace Fullnot) on Facebook.