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?”

 

 

 

 

Taking Stock of Positives and Possibilities

Maybe something you needed to hear today

Don't Make It Weird

Living with chronic illness is an extremely isolating phenomenon. At times. It can also be spirtually empowering…at times. Drawing from the gut. And the soul. But, rebuilding in the wake of it’s realization eventually begins to feel less like Rebuilding, and more like Functioning. More like Survival, and less ‘getting back on track’. Maintaining, rather than shooting for the proverbial moon anymore. But, the good found here lies in your most basal presence. You, in barest form. When all else has been stripped away, everything we know of ourselves, down to the studs…you see and speak with the raw version of yourself. Head on. No airs. No pretense. No false pride. No cover of self talk and lifelong internal scripts or preconception. No walls. No hiding. No bullshit. It is nothing short of a blessing to be challenged in the unflinching manner of this depth.

Your worries and fears still…

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3 Broken Bones and a Lisfranc Injury

Last year I told you I had another WTF moment.  No surprise there, I’m sure. When I left the Immediate Care, they told me that I had broken two bones in my foot and would need to follow up with the orthopedic surgeon the following week.

On Monday,  I saw the KNEE surgeon.  (remember I had knee surgery the previous week) He said while they were able to do the Meniscous repair and “clean up” a bit inside of my knee, they were still recommending a partial knee replacement once I healed from my newest injury…smh

On Thursday, I saw the Foot Surgeon.  When he came into the room, he shook his head saying, “Well Grace, you really did a number on yourself this time”.

and then he said nothing and still nothing.

He stood there and continued to shake his head.  I’m not sure what the actual pose is called, but you know when someone is deep in thought and they almost rest their chin on their hand, slightly covering their mouth?  Well that’s the pose and the longer he had it, the more nervous I got.

Finally he sat down next to me and said, “Well you’ve got some options.  You have 4 broken bones and may have a torn ligament.  If we go in for surgery right now, I will have to place a plate and screws in each of the bones you’ve broken.”

Now it was my turn to be silent.

Holy shit!  No! No! No!  A million thoughts ran through my head mostly about all of the plans I had for the holidays.  I couldn’t wait to see the twins opening their presents on Xmas.  Thing 2 had just gotten a puppy and I was looking forward to training her.  etc etc

When I finally spoke it was to say, “This can’t be happening!”  Einstein quickly chimed in with, “Oh, it’s happening sweetheart”. (from the state farm JACKED UP commercial)

I pleaded, “But you said I have options right”?!?!?!

After much discussion, we decided to continue with R.I.C.E to allow the swelling to go down and to allow me some time to absorb all that he had told me.  I left his office that day in an orange split cast with instructions to stay in bed for the next two weeks with my foot elevated above my heart and the Ice machine continuously running on my knee.

leg above your head (7)

While laying in bed, I spent TOO much time on Google, researching the various options that might be possible.

 

 

 

Since that first day, I have been back to be recasted 4 times. I am currently sporting the ‘sexy’ black one.

There is still a lot of swelling, I’m not spending all my time in bed anymore though either.  The current plan is to remain in this cast until the 30th (unless the swelling continues to go down) Then evaluate the extent of the lisfranc injuries to determine the next step.  Hopefully the 2nd, 3rd, and 4th Metatarsals have begun to heal by then.

Some positive notes

  1.  amputation is not an option
  2. I have time to blog and catch up reading everyone I missed
  3. I am getting great upper body strength while using the wheelchair
  4. I have mastered getting 1/2 in and out of the tub without getting the cast wet, though not without making a bit of a mess.

beautiful tubs

 

 

 

 

 

 

Grace Being Tom…Being Tom

On Christmas last year a fellow blogger, Tom from Tom being Tom, recognized me as a blogger that other bloggers might approve of.  As he frequently does, Tom used his creativity and humor to shake things up a bit, and named his recommendations as Reindeer in the theme of the holiday.

I was granted the name Prancer.  I’m not sure how Tom assigned the Reindeer names, (Einstein and I were talking about it, and if anything I should be Blitzen with the thought of BLITZKREIG), but I will trust Tom’s decision on this because he always says the nicest things about me.

As part of the recognition,  I’m supposed to tell a story about how I began blogging.  If you are interested in reading it I have previously shared my story here in my first blog post.

When receiving recognition, one is supposed to share any advice for new bloggers.  As far as advice……Like most things in life I am a better example of what NOT to do than what to do so it’s up to you if you want to follow. 😉

The first time I was nominated for the the Blogger Recognition Award, I sent the person who nominated me a short message saying, “Thank you for the acknowledgment, but I’m not comfortable with awards, thank you for thinking of me.”

Not long after that, I received another nomination which I also declined.  Again, I sent a quick message thanking  the nominor?  (What do you call a person who nominated you for something?  Google did not have an answer for me.)

When I was nominated the third time, I had found so many amazing bloggers that I ‘kind-of’ accepted the award, just to promote the bloggers that I loved.  (Ok I made my OWN, not your typical blogger award just to be different.)

Included in my award were,  DGGYST, The Incurable Dreamer, Superman, And Bojana.

Damn Girl get your shit together took a break for a bit, but has recently come back and is worth more than a peek. I still caution everyone not to drink anything while reading her blog, since numerous times I have spat or choked on my coffee from laughing so much  while reading.  Yes she is that good!

The Incurable Dreamer is no longer part of the blogosphere, but will be fondly remembered!

The third blogger I named is Superman, who while not TECHNICALLY a superhero, is still a pretty terrific guy.  In his latest blog post, The Lessons of Time,  he summarizes some of the challenges he has faced during the last 10 years. I believe the ‘average’ person may have given up when facing some of his challenges, or at the very least become very cynical.  Not only does Superman continue to face his challenges head on, but he does it while continuing to help others.

The final blogger I named is Bojana, from Coffee and Confessions to go.  I have included this link to her blog, although it may not work since her blog is no longer public.

Several months after I ‘created’ the Not your typical blogger award, I revisited  it and recognized additional bloggers that had captured my attention.  First on my list was Tom.  I posted several links that I enjoyed from his blog. (I had to limit the number that I shared, because at that point, I had gone back to read every post he had ever written) Unfortunately, those links along with many others were eaten by the internet.

The next blogger I recognized is Lisa from All About Life.  I am happy to see that Lisa’s blog writings are still viewable, but she seems to have taken a break from adding to them, as she was busy writing and publishing a book, From his Perspective, during the last year.

The final blogger I recognized is “Lockwood” from the Lockwood Echo.  She seems to have taken an intermission from blogging, to start an online shop for her photography.  Her blog and the archives are still available though.

I myself have not been present  in the blogosphere too often over the last year, mostly because I have spent an overabundance of time at Doctor’s offices or in hospitals not only for myself but for others I care about.  While admittedly, those locations are better than Jails or cemetaries, last year was very overwhelming for me.  The Loss of My Best Friend was my undoing.

If you have poked around my pages at all, you have probably noticed that at times I am very long winded and I take a round a bout way of getting to the point.  Let me get to that point now.

I would like to Thank Tom, from Tom Being Tom for the recognition, it truly means a lot.  Advice I would give to new bloggers is simply to “Just be you”.  While putting your words out there, reach out and get to know other bloggers. The rewards I have received from finding “my tribe” are so much more than anything I have contributed.  Best of luck to you!

I will end by directing you to another blogger that I consider part of my Tribe, Kim, the writer of I tripped over a stone.  Kim, her husband, and their fur babies have recently begun their adventure of RV Living.  I just realized today is Sunday.  On Sundays, Kim posts What about you? , quick questions that she asks to get to know a little about you.  If you have a moment, THIS is a great place to start.

Thank you for stopping by.  Best of luck on your blogging journey!!!!