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?

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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?

 

 

 

 

 

 

 

 

 

 

Conflicting Emotions

Have you ever felt emotions that were complete polar opposites at the exact same time?

Last week, I wrote  One Step forward, two steps back.   I saw the surgeon this morning.  I should be happy that he was able to see me so quickly, and that they will be getting me in for surgery soonish.  I AM happy…kind of.

BUT, I am also pissed off.  I’m mad at the doctor who dismissed my foot pain and swelling as gout, but I’m even more upset with myself for letting him.  I should have fought harder for myself.  Three weeks have passed since my original visit to the doctor,. Three weeks before I couldn’t handle the pain anymore, and went to immediate care.  THREE weeks more damage to my foot because I continued to walk on it.  and NOW surgery.

The doctor is trying to get me in for surgery this week, but I have Medicare for insurance, and they don’t do anything quickly, so maybe not until next week.  I suppose I am to blame for this too, since I refuse to take pain meds, it can’t hurt that bad??!?!?!??!   I don’t refuse pain meds because I have a high pain tolerance, I refuse them because even one norco binds me up for at least a week and the mood swings are scary…. In hindsight, I will ask for them anyway.

While on the subject of being angry.  I am also mad that I bought another pack of cigarettes.  No one forced me to do that, and I know that recovering from surgery will take longer if I continue to smoke, yet I did it anyway……I have thrown the pack out 3x only to dig it back out of the trash….yes disgusting I know……

But did I mention yah surgery?…..smh

One step forward, two steps back

Do you ever feel like for every step you take forward, you take two backwards?  That is the best I can say to describe the events happening in my life right now.  I did think of using a hurricane or other storm as an example, but while those things ONLY cause disaster the things happening in my life are only causing me grief, and I haven’t given up just yet.  So what’s been happening here….

Instead of re-writing, or copying and pasting things from previous posts, I am going to add links to my previous posts if you want the back story.

Walking a minimum of 4000 steps a day

On July 13th, in the post let’s get moving.  I talked about making it a point to walk everyday to increase my endurance, strength, and stamina, even though I am afraid to walk alone and have had some pretty bad experiences.  The positives are that I have finally reached my goal of walking for a full mile at a time, and have had some days that I have reached more than 8000 steps (not at one time though).  I was doing good with the whole weight loss thing, ( I haven’t written about that yet), until Birthday week hit….yah cake?  My neighbor (who works nights) even started setting an alarm to wake up at 8 am and walk with me everyday.  I bought a rollator walker to help with my balance, which I used in the evenings to try to get a few more steps in.

One day after getting lots of steps in, I came home, took off my shoe and saw this…foot oww

Awww, shit. I had broken my foot a couple years ago, and had attributed the pain to “an old sports injury”.  The fact that it was so discolored told me that I couldn’t ignore it any longer.  I reluctantly called the podiatrist I had been referred to in the past.  I don’t want to be “one of those people” that claim that doctors treat patients without insurance differently, but after the office visit I have to be.

The doctor physically examined my foot, said it felt warm to the touch and was obviously very inflamed, but since I hadn’t suffered an actual injury “this time” he was going to call it GOUT.

reallyHe sent me to the lab for a uric acid test, gave me a prescription for indomethacin, and told me to keep ice on it for a a couple days, then to start doing stretches for it.

NO Xrays?!?!?!?  That’s it?!?!?!  Not even an order to stay off of it…..

I went to the lab and had the uric acid test done, which came back as negative for gout.  Ya think?!?!  I did not take the prescription because NSAIDS, cause my blood pressure to go through the roof, and make me sick to my stomach.  I instead have been living on advil and tylenol.  (also not good, but the pain got to be pretty bad even at rest).

Yesterday, I broke down and went to an immediate care center.  The first step while there was to do XRAYS.

GUESS WHAT

It’s broken AGAIN!!!!  Is anyone really surprised?

So now I am back in a boot, yah that it’s a short boot this time, but a boot nonetheless.  I have an appointment Monday to see a surgeon. If I end up spending any real time in the boot again, I will be ordering an “Even Up” from Amazon this time.

I don’t have the time or the patience to figure out why the link to amazon isn’t working, but if you want to see what I am talking about please click the link below or google “even up”.

<a href=”https://www.amazon.com/Procare-EvenUp-Shoe-Balancer-Small/dp/B00YBP7N9Q/ref=as_li_ss_il?ie=UTF8&qid=1534367535&sr=8-1-spons&keywords=even+up+womens+shoe+balancer+for+women&th=1&linkCode=li2&tag=gracefullnot-20&linkId=b708949e806607bddd4b94e1c2521092&language=en_US&#8221; target=”_blank”><img border=”0″ src=”//ws-na.amazon-adsystem.com/widgets/q?_encoding=UTF8&ASIN=B00YBP7N9Q&Format=_SL160_&ID=AsinImage&MarketPlace=US&ServiceVersion=20070822&WS=1&tag=gracefullnot-20&language=en_US” ></a><img src=”https://ir-na.amazon-adsystem.com/e/ir?t=gracefullnot-20&language=en_US&l=li2&o=1&a=B00YBP7N9Q&#8221; width=”1″ height=”1″ border=”0″ alt=”” style=”border:none !important; margin:0px !important;” />

Basically, it’s something you attach to your other shoe to help not cause further injury by walking “crooked” or unevenly when you are stuck in a cast. IMO well worth the $20.00.

When I began writing today, I had envisioned telling you about all the fun ( said very sarcastically) I had trying to switch to self hosted, and updating you on Me and my shadow, but this post is pretty lengthy as it is so I will write separate posts….later.

It’s good to be Back…. I have missed interacting with everyone and feel like I have alot of catching up to do.