NOT THE TUBE!!!!

July 6, 2018October 5, 2018 ~ msgracefulnot ~ 35 Comments

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.

I 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.

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.

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.

I know how to disconnect the coil myself.
I only schedule one mri at a time.
I do keep my eyes closed the entire time.
I keep the music on very loudly in the headphones
I “tie” the panic bulb around my hand
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)
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.
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?

You’re doing what? With who? Where?

April 19, 2018October 5, 2018 ~ msgracefulnot ~ 14 Comments

Phone conversation with Thing One:

Grace : “While I am in Boston I am going to meet a couple of friends that live in the vicinity whom I met in the blogging world.”

Thing One: “OK, mom, don’t forget the “proof of life” pictures.”

Grace: “you got it kiddo”

Friday, April 6, 2018

proof of life — Grace Fullnot….last seen wearing pic

Grace: Good Morning kiddo

Thing One: What’s wrong?

Grace: Nothing, just sending you proof of life, Bill will be here in a few minutes to pick me up.

Thing One: Why aren’t you smiling?

Grace: Seriously?… Because I am freezing my ass off, and besides I wouldn’t be smiling if I was kidnapped 😛

Thing One: I’m gonna need another picture

smile — The things you do for your kids….

Grace: Better?

Thing One: 😀

SMH….for those of you who don’t know…SMH is Shaking my head. (I really do that A lot!)

Superman was supposed to pick me up by 10. I’m expecting a little Honda Civic to pull up…. he tells me when he’s on his way that he will be driving a truck instead…..ummmm……. itty bitty roads….

“Let me know when you’re close, I might have to meet you on the corner?”

Before I knew it, ( early even ) there he was loading mine and my companions suitcases in the truck. Bill and I were heading to Salem for the day, where we would be meeting Karyn and Steve after exploring Salem for a bit. My traveling companions were going to Pax East at the Boston Convention Center, and we would meet up again at a new airbnb apartment near Salem for the night.

Superman Really Does Exist

Before we ever decided to meet in real life, Bill and I spent hours on the phone. (not all at one time, though he did provide a big shoulder when I was struggling with Sara’s death) but we’ve talked about our illnesses, our common expression of saying, “are you really sure you want me to answer that?” when people ask for our opinions, and so on and so on. Not only is he a great writer, but a great friend.

The real reason I am not posting his picture, is because he wasn’t feeling well and hasn’t been for awhile. That’s HIS story to tell though, if you want to check it out. As I said, he is a great writer, and just an all around great guy.

After eating breakfast at a little restaurant in Salem, we wondered around to find the Salem Witch Museum (my choice, not his)

I’m not going to say much about the experience, because hearing about the amount of hatred that people endured during the witchcraft trails still gives me the chills, but I did want to share this postcard. The last room of the museum is painted with the words on the postcard….. Very thought provoking!

Of course it was snowing in New England…AGAIN

snow in new england — Just flurries though for the time being

Let me tell you a little bit about the other two bloggers that I got to meet.

First of all there is Steve Markesich

Of course you can read his About ME page, but I want to tell you about the man I met. I’m not sure exactly how our path’s crossed. ( I think he was doing the “my publisher said, I need to add as many people on social media as I can for the book I am writing thing”) Either way, Steve’s is the first blog I ever started following.

I love the honesty, openness, and determination he displays when he writes about living with Primary Progressive MS. MS is a nasty monster, and while I would not wish the disease on anyone, it is good to know you have people like this with you on this scary ride. Poor Steve has also become a dear friend (didn’t know what you signed up for did you?”) Please take a moment to check out his blog MSich Chronicles. He does a great job of sharing how he overcomes the challenges that MS has laid at his door.

I had the privilege of meeting Karyn who writes Karyn’s Domain.

Karyn and my paths first crossed around the time she wrote this The best blog I ever read. She sent me a message saying that she had found my blog after reading Superman’s posts in their entirety, and looked forward to getting to know like minded people….

As many of you know lately my life has been filled with Drama, drama, drama, and I haven’t had much time for keeping up with ANY blogs, but the day after we met, I went to her website and saw this post. (Honestly at first thought from the meme, I thought she was talking about me….lol). This woman quit her job, and hiked the Appalachian trail!!! How can you NOT want to know more?!?!?! Actually , there is much more to Karyn, I encourage you to follow her on her journey as she discovers where she is headed next. I know that I will be.

I would like to tell you that our “little get together” lasted until dawn and that we all just barely escaped being arrested for a noise disturbance. But to tell you the truth…. we got together and just talked…..and it was perfect! (in hindsight, they might have brought duct tape for MY Mouth)

Thank you all for making the trip and spending your time with me. I look forward to our ongoing friendships!!!!

We must have a bad connection

March 4, 2018March 3, 2018 ~ msgracefulnot ~ 17 Comments

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.

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?

Will I ever learn?

March 2, 2018October 5, 2018 ~ msgracefulnot ~ 27 Comments

Will I ever learn patience or to slow down?

Nope, probably not. (Hey don’t shoot me, I’m being honest here) My whole life I have struggled with patience, and I have always been “in a hurry”. When My MS is at it’s worst though, my body won’t allow me to be impatient or in a hurry, and when I try to, I get hurt.

Yes I got hurt again 😦

I got hurt, but I’m not dead. I will explain what happened in just a moment, and you can even “yell” at me if you think it will help, but first let me explain, well try to explain why I did it.

So I wrote the other day that a trailer “fell into my lap”. I had help for a couple hours, I moved what I set out to do and that’s all I was going to do. My dad told me that since he thought he was having surgery the trailer was free for a couple weeks, and I might as well have the kids drop it at Einstein’s since he wouldn’t be using it. (That way I could take a “slow and steady approach” to loading it.) Thing 2 and her boyfriend “D” dropped the trailer off in Einstein’s driveway for me, when they were done moving the bikes.

Just because I am proud of my daughter I took a video of her backing the trailer in. This is funny to me because “D” doesn’t “trust her” to drive HIS Truck, but knows she is better at backing up a trailer than he is….That’s MY GIRL!!!! but I digress….

BUT THEN….

The temperature changed, not just the outside weather temperature, but the temperature in Einstein’s house wasn’t as frigid. I will write more about that another time and in another place, ( I think a new blog is coming ) but the verbal knives weren’t flying anymore and I started “getting cold feet” about leaving, so I HAD TO GO.

Einstein had been complaining about where the trailer was parked, and had even tried to move it by hand…. I did not say out loud “THAT”S NEVER GONNA HAPPEN”….but it did inspire me to make a call….

There was help available. A young man that I had friended a year or two ago while I was taking classes, was willing to help me move. We will call him “J”. (He said, “Hell I’ve got a truck, trailer, and plenty of friends”) just pick a day. That’s something that I would say, not something I am used to hearing so….ok “How about NOW?” came out of my mouth.

and that’s how it all began……

When you have help you take it!!!! “BUT don’t you EVER take help without working your ass off just as hard as the person who is giving you help!!!!” This one I think was literally beat into my ass as a kid, so no way is it going away anytime soon.

Einstein was NOT happy that I was having a “DATE” (as he called it ) over to help me move, so it was only “J” and no friends. Einstein moved most of my furniture to the doorway in preparation. (Did I mention a new blog coming soon?….when I don’t live in HIS house)

So the trailer was quickly loaded, and my car was filled, and off I went. Almost all of my furniture that can not be strategically shoved in my car has been “deposited” in my new place. (Of course it wasn’t until I had set up my big comfy couch that I realized there is no electricity run to the wall of the west side of the “living room”) But that is another story for a different day.

So what did I do?

I worked my ass off!!!!….and then some….I THOUGHT I broke my foot again. I remember the doctor saying, “this is going to hurt a bit”, as he stuck a needle in my foot. There was quite a bit of pain. (enough to make me vomit and then pass out) His orders were keep it elevated and iced all day. Back in the boot or use your wheelchair for one week…and of course take these drugs. I give in, not up, but I give in…for now.

The “moral” of the story is I did what needed to be done and now my body says IT’S done. I didn’t PURPOSELY over do it or rush. It’s so hard not to “overdo it” when you ARE feeling well, considering you KNOW that the “NOT feeling well” is just around the corner.

The patient suffers when insurance plays doctor

December 20, 2017October 8, 2018 ~ 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 😦