Hey, I’m doin alright….

I woke up this morning in a bit of a panic thinking,  “Que dia es hoy”?

I’m not sure why I always ask that in Spanish, but I do.

What day is today?!?!?!?

My brain raced through all the things I have or had to do this week.

Check Check Check.

Deep sigh of relief…

Ah It’s Friday!  I don’t have to be anywhere until 3:15 pm!!!!

I closed my eyes, prepared to go back to sleep, but then it hit me.

Today’s a GREAT DAY TO BE ALIVE!!!!!

I quickly got out of bed and into the wheelchair to head to the bathroom. Next, I wheeled to the kitchen to hit the button on the coffee maker, and finally to the porch to let D.O.G. out.  As I sat staring at the coffee maker urging it to produce faster, another thought popped into my mind.  At yesterday’s appointment with the orthopedic surgeon, I was given the go ahead to begin taking steps as tolerated while in the CAM boot.  I  jumped up and down!!!! (figuratively not literally)

I quickly raced back into my bedroom and took off the surgical shoe that I sleep in, and donned the knee high cam boot that I used to abhor.  THEN

I STOOD UP and took a step  WOW that hurt!!!

I sat back down in the wheelchair and headed back to the kitchen for Coffee.  (That was two hours ago and I’m still on a It’s a Great Day to be Alive High)

Yes the foot thing is great news, but to be honest it’s not the reason for the high.  My non drug induced High is because I survived a really rough week and lived to tell about it.

I almost thought about turning on the video camera to tell you about the week I have had, because I can talk so much faster than I can type,  But 1 I need a shower badly and 2 I think I am so Happy the words would come out too fast and they wouldn’t be comprehensible anyway.  So instead, I would like to give a brief summary of the week and go into more detail in the future.

Monday

I had surgery for Botox injections in my bladder.  For the first time ever, the anesthesiologist let me stay awake while they finished setting up in the OR.  I have had this surgery at least 2 times a year for the last 10 years, and although I have asked repeatedly not to be put out, I’ve never made it awake longer than a few minutes in the Operating Room.  Spoiler Alert…this MAY be the last time I have to have this surgery!!!!! (More about this next week?)

Tuesday

I woke up on time for my scheduled hearing with the IL Dept of Public Aide!  (That in itself was impressive considering I didn’t get home from the hospital until 9:30 p.m. Monday night)  I have been FIGHTING with the state for many years and finally requested a hearing to resolve the issues.  Spoiler Alert… MAYBE it worked out in my favor?

Wednesday

This was Not my day.  I mean I was not the patient on this day.  I think I have said numerous times that I would rather “take the hit or the pain” than to have my loved ones have to feel it.  Today was my Dad’s day.  I’m still not sure what is appropriate to share about my father’s condition so I will be brief.  Over the last year and a half, my father has been having numerous issues with his vision.  Together we have seen more than 10 specialists looking for help and answers.  While the ‘mystery’ is not solved, Wednesday we received some hope.  I’m gonna leave it there and hold onto the hope awhile longer.

Thursday

I mentioned that above.  I can begin walking!  Since I began writing this post I have taken a few steps.  I’m weak and wobbly, but a step forward is good one so I will take it.  BABY STEPS!!!!

Completely random subject change here… My grandsons have begun taking their first steps while holding onto or pushing things!!!!!!!!!!!!!!!!!!!!  Super exciting!!!!!

Friday (Today)

2 MRI’s at 3 :15.  Although I’m not looking forward to the tube, Thing 2 will be taking me and it will give me more answers to what my next step (see the funny) with my MS will be.

So yay! Today is Friday and it’s a GREAT DAY TO BE ALIVE!!!!!!!!!!!!!!!!!!!

For the off chance that anyone is NOT having a Great day, give this song a listen to, and see if it perks you up a bit.  (It’s actually my Not having a great day song, but it does pump me up.) It’s a great day to whoop somebody’s ass!

Happy Friday Everyone!  See you next week!

 

 

 

 

 

 

 

Are you ready to live?

A couple of weeks ago, I shared some admittedly pretty scary information with you in my post, “Are you prepared to Die“?

I’ve spent a lot of time thinking, reading, and otherwise researching what my next steps should be.  While doing this, I have created two more quandaries for myself.  The first being not knowing who or what to believe.  People that claim to be specialists tout one thing, while other people claiming to be specialists tout the exact opposite.  You also have your everyday ‘average people’, also equally divided, demanding with as much fervor as two rivals debating politics that they have the answer.  (They must, they live with it everyday)?????  I find that I am overwhelmed not only with all the information available, but also by verifying the ‘credentials’ of the sources.

I’m going to table this quandary for now because I honestly feel like I am playing Russian Roulette.

The other decision that is plaguing me is, “Am I prepared to live?”    You’re probably thinking, “OF COURSE YOU ARE!!!”  At first it seems like a no-brainer doesn’t it?  Well duh, of course you want to live!!!  But is it really that simple?

Let’s say your doctor tells you that in order to live you have to murder, and eat someone once a week.  Apparently, the nutrients in another human would allow you to not only be disease free for a week, but they would return you to a more ‘youthful’ state with unlimited energy etc.  While some people may feel that this would be acceptable to them, for me it’s a deal breaker.  I would probably go so far as to purposely end my life to prevent some well meaning person from TRYING to save me.

I know that my example sounds extreme, but as a “professional addict” I assure you it’s not.  Do you know that smoking can kill you?  I still smoke.  Being overweight can also kill you, yet I won’t turn down cheesecake. etc etc…In addition to taking away those vices, you should change the things you eat.  Yes take away the things you enjoy, and ADD eating dirt (the food you most abhor) or  only being allowed to eat something that someone else has chewed up and spit out.

I am purposefully being facetious because what one person finds an acceptable another would NEVER do,  and I’m trying to make a point.  DECIDING TO LIVE takes a lot of work.  It requires many changes and some sacrifices. while at the same time knowing that you are going to die at some point anyway.  Up the ante by adding the FACT that there is no guarantee these changes will help, they may even make you sicker.

But it worked for my neighbor’s sister’s third cousin once removed’s dog?!?!?!? 

All sarcasm aside, I am beginning to accept the fact that in order to continue living, I have to make some serious changes in my life.  None of them are appealing to me, but I find I’m not quite ready to die.  I’m not prepared to swear to a course of action yet, but I have begun making changes. I reduced the number of cigarettes I smoke from more than a pack a day to 2 cigarettes a day.  I have been tracking everything that goes into and out of my body. ( I promised no more sarcasm today so I will just leave that one alone for now)  I have been investigating 4 MS drugs that I have been introduced since I began TYSABRI.  To be honest, the side effects of all of them are scary as hell so discontinuing any disease modifying treatment is also on the table.

It’s very dangerous for me to “get all lost in my mind”, so if you are willing please take a minute to share something you have struggled with or are struggling with and how you are working to overcome it.  It helps so much to know that we are not alone.

Are you prepared to die?

Before I continue, let me assure you that this is NOT a suicide note, nor is it a notice of my impending death.  This is a question I’ve asked and answered myself many times in my life.

If you’re not dying, why do you bring this up now?

I just received some unsettling blood tests, and I have some choices that I have to make.  When I receive bad news, in order to not “freak out”, I look back at all the things I have survived in my life to remind myself that I can be pretty damn tough.

As many of you know, I was diagnosed with MS over 20 years ago.  What you may or may not know is that I have had 3 family members die from complications of MS.  This disease has been “in my face” for many years before it actually caught me.  When I was diagnosed, I asked myself if I was ready to die, not if I was prepared, but if I was ready.  The answer was, “HELL NO!”  For the first year though, I didn’t do much to FIGHT it.  Instead, I began drinking ALOT.  I also started behaving very manically, (well if I’m going to die anyway, I’m going out with a bang)

About a year after my “MSaversary”,  I finally stopping running and faced the diagnosis. I began taking the disease modifying drug Betaseron.  For 10 years, I gave myself an injection every other night, yet my MS symptoms continued to steadily progress to the point that I was in a wheelchair more often than not.  I was constantly depressed.  During this time, my kidneys began shutting down, AND I was diagnosed with cervical cancer.  Around the 10 year mark, I think I WAS ready to die.  Not prepared, but ready.

At then end of 2009, my girls and I made the very long hard decision that I was going to begin receiving monthly infusions of Tysabri even though it could kill me.  I decided that QUALITY of life meant so much more to me than QUANTITY!  I have previously written about how the decision was made in a Five part series if you would like to read.  The decision to start Tysabri Part 1The decision to start Tysabri part 2, The decision to start Tysabri part 3, The decision to start Tysabri part 4, and finally, The decision to start Tysabri part 5.

To date I have received 121 infusions of Tysabri.  I credit this drug for giving me my quality of life back.  I do not regret my decision in anyway, in fact I have even argued with my doctor about NOT switching medications when he suggested that I consider it. Last year, I wrote “Who’s the boss anyway”? explaining my reason for denying the change.

At the end of last year, I had to see my neurologist so he could perform my yearly neurological exam, refill my prescriptions, and send me for the required JC virus test to be allowed to remain on Tysabri.  My son in law was nice enough to drive me to Chicago for the visit.  Because of my newest list of injuries, the doctor was unable to provide a complete exam.  The parts of the exam he was able to perform showed that I had increased numbness (lack of feeling) on the left side of my body.  I have also been having some issues with my vision (though I have been attributing that to my age).  He wrote the refills for my prescriptions, and the order for the bloodwork, and we agreed I would come back for a full exam once my foot healed enough to be able to walk on it.  (hopefully March)

NOW let’s talk about these unsettling blood tests….

My bloodwork came back stating that I was now JC+, meaning I had the John Cunningham Virus (JCV).  Not only did I test positive for the virus, but my titer levels are considered very high. 4.8!

hmmmm now what?  I have a decision (well several to make)

Here are the drug facts

In addition to revealing that I have now become JC+, my bloodwork revealed that my Absolute Eosinophils are high.  What the hell does that mean?  A quick Dr. Google search said…

Eosinophils are a type of disease-fighting white blood cell. This condition most often indicates a parasitic infection, an allergic reaction or cancer. You can have high levels of eosinophils in your blood (blood eosinophilia) or in tissues at the site of an infection or inflammation (tissue eosinophilia).

OF course the first thing I saw was CANCER……cmon!!!!!!!  Seriously?!?!?

After speaking with my Neurologist, WE have decided first to have the bloodwork performed again.  (there is always a chance for a false positive?)  Because of the decreased sensation on one side of my body, the increased balance issues, and vision changes, IF the test still comes back with a high Titer level, the first step will be to undergo further testing for PML.  I haven’t even thought about further testing for the High Eosinophils, I honestly believe that everything else going on in my body is causing that.

I have so many questions and decisions to make that I find myself asking again, “Am I prepared to die?”

 

 

 

 

What happened?!?!?!?

I can tell you the truth, but it is SO boring and lame, so instead I am asking you to tell me.  Many of you are incredible storytellers, so please help me with a humdinger that I can respond with while people are asking me over the next few months.  “What did you do?!?!?”

You tell me…. “What did I do?”

Look at the size of my foot compared to my ankle….WTF?!?!?!

I do all my own stunts, though not intentionally

I would tell you to grab a bowl of popcorn before reading my latest drama, but if you are anything like me, you would choke on it from laughing too much.   I would suggest kleenex if you’re the sympathetic type, but to be honest I have done enough crying for all of us in the past few days.  Instead, I ask that you find humor in my latest  WTF story. If you’re willing to, please share one of your wtf’s with me.  I could really use a laugh.

I mentioned briefly in my last post, It’s certainly been a minute huh?, that I had been taking more of the caretaker role lately and that although I had had a couple more falls, they really hadn’t been anything out of the norm.  For some reason my brain translated this information into, “You should go big or go home Grace”, or “let’s really create some damage”.  As it happens, I now have quite the story of my own to tell…..SMH

Where to begin though……….

In the middle!  Let’s jump right in the middle.

So hey guess what…. I’m not pregnant!!!!!  Yay me?

I’m actually kind of sad about that, not because I want anymore children, but because after the lawsuit or news stories, I would be as rich as midas.  Are you confused yet?  So am I.  Maybe this story would be better told with less sarcasm?  Let’s go back to December 4, 2019.

Wednesday, December 4, 2019

I am sitting up on a hospital bed answering the 1000 pre op questions I have been asked before, like it’s just another day. ( After more than 50 surgeries, it does feel just like any other day).

Nurse: I’m going to need a urine sample, and then we will get your IV started.

Grace:  For a pregnancy test?  No need, I had a hysterectomy over 15 years ago.

Nurse:  Was it a total hysterectomy?  I mean did they remove your ovaries also.

Grace: Um no but……

Nurse:  Then we still need to do the test.  While the chances are like 1 in a million, it can still happen.

As I am thinking, “Have you met me?!?!?!?  I am the queen of being 1 in a million”, it dawns on me that next Friday is Friday the 13th, and I start to feel sick.  Not because I am superstitious, but because I have two children. I found out I was pregnant with both of them on Friday, December 13th.  ( 1990 and 1996)

It really doesn’t matter that multiple nurses blew my veins multiple times trying to start an IV.  (I have a port for that reason)  It doesn’t matter that the anesthesia they were trying to use didn’t knock me out for 15 mins.  (Burned like hell, but wouldn’t put me out)  It doesn’t even matter that although the doctor was able to repair a lot of the damage in my knee, I am still going to need a partial knee replacement…..

At least I wasn’t pregnant.  SMH

Want to take a break and come back in a minute?  Believe it or not, I’m not even halfway done with this WTF story.

I spent the rest of the week in bed with my knee above my head attached to an ice machine.  I was able to walk (slowly) within a couple days and the pain was minimal.  I was even able to drive to Einstein’s within the week.

Friday the 13th came and went.   I am still not pregnant!!!  So life is good right?

HA HA HA HA

Saturday, Friday the 14th

Maybe I am a little superstitious, but not about the 13th.  I have had several bad experiences on Saturday the 14th (any month) that have even included being arrested.  Yes I have been arrested before, but that’s a whole different story, which ironically does have to do with me getting pregnant.  :O  Let’s stick with this Saturday the 14th though.

I am leaving the kitchen at Einstein’s and I kick or trip over the 1 inch lip at the bottom of the dog gate.  Oh Fuck, I know I am going down…. NOT MY KNEE NOT MY KNEE!!!!!!

The good news….. I didn’t land on my knee.

The not so good news ……I can’t get up.

While going to get my wheelchair from the other room, Einstein jokes, “why did you put this away already?”  NOT FUNNY!  I am in so much pain, I start to cry.  I really can’t stand up.  Einstein had to pick me up to put my in the chair.

High Ho, High Ho, off to the doctor we go……. smh

Before scrolling down, care to guess the diagnosis?

1214191421

While waiting for the xrays to come back, I am imagining the worst.  foot-top

Did I fuck up last years surgery on this foot?

(You know the one where they put a plate and screws in my right foot?)

Earlier this year, I fell while holding my grandson and broke the lag bolt while trying not to hurt him…

BREAKER OF TITANIUM….

not quite as cool as Mother of Dragons, but applicable nonetheless.

 

Ready for the verdict?

I broke the 3rd and 4th metatarsals.  (the long bones in the middle of your foot)  I don’t remember the terminology  “the breaks appear to be clean”.  With luck I am in a non weight bearing cast for a couple of months and that is it.  I see the orthopedic doctor on Thursday to see if the swelling has gone down enough for a hard cast and hear his opinion about surgery.

Please keep your fingers crossed for me.  I am truly feeling that if it wasn’t for bad luck, I wouldn’t have any luck at all.  But hey at least I’m not pregnant?