Breaking Records

Friends! Big news!

I broke my record!

(Drumroll please…)

Previous record: 14

New record: 17.5

17.5 vials of blood, that is.

Smashed it!

And the .5?

Evidently my left arm has decided to close for business after years of blood draws and IVs, and has built a blockade of scar tissue. After it took the phlebotomist 5 minutes to fill half of a vial, we decided it was time switch arms.

After all, at that rate it would have taken approximately 85 minutes to draw 17 vials of blood.

No, thank you.

On the contrary, that would ALSO have been a new record…

To say I am back in my starring role in a medical detective series may be an understatement.

In fact, the past few weeks make for a nice little counting book:

1 Electromyography

2 Neurological studies

3 Cardiac tests

4 Visits to my friendly neighborhood phlebotomist

5 IV’s

6 Doctor’s appointments

Oooo, or perhaps it would be better sung backwards like the “12 Days of Christmas?!?!”

“Fiiiiiiiiiive intravenous infuuuusssionnnnssss!"

Take that, golden rings.

Needless to say, it’s never dull around here. In addition to smashing records left and right, I also got myself a brand spanking new diagnosis code!

[If only people threw parties for new diagnoses…fiesta all the time! Sweet potatoes for all!]

ANYWAY.

Recently, I had a tilt table test. I’ve had one of these before, but this one was much more extensive and was monitored on multiple levels.

If by multiple levels, I mean I could have walked into a bee hive and been protected, as nearly all the surface area on the top half of my body was covered by sticky, beeping, pulsing things.

After being strapped to a freezing cold hospital bed with a footboard, the bed is raised to nearly perpendicular.

And then you just stay there.

Strapped to a board.

Unable to move a muscle.

Chatting with the cardiologist, who tells you to “get comfortable.”

I mean, you lose feeling in your arm as your blood pressure cuff squeezes every minute or so, and the pulse oximeter decides you are dead here and there because the bed is so darn cold, but other than that you are totally comfortable laying against the pillow made of plastic bags...

In any event, while this whole process is happening, the nurse and doctor are watching a little screen behind me (so sneaky!) and monitoring my heart rate and blood pressure.

And in my case, literally watching the blood drain out of my upper body and into my legs, much like a sand timer in a board game.

Reallocating resources? Eh?

I also had an IV, where the nurse was supposed to give me something to put my body in a dehydrated state halfway through the test.

Honor roll student that I am, they didn’t even need it!

In fact, my blood pressure took a trip to around 70/40 and instead of watching my heart start to beat like crazy to fix the issue, my medical duo watched my heart rate take a mini vacay to a whopping….31 beats/minute.

On second thought, I’m a pretty big fan of those bed straps.

So anyway, dysautonomia.

Malfunction of the Autonomic Nervous System.

Also known as, when your body doesn’t do what it is supposed to do automatically.

Didn’t we already know this? Yes - but now we have some more specifics.

Specifics as in, my organs haven’t been getting enough blood. For years.

No biggie.

So let’s review my stats:

Retired

Hates to be cold

Goes to bed early

Eats exclusively mushy food

Attends adaptive yoga

Owns several pairs of compression socks

Recently found her phone in her shoe rack...

Just in case those statistics didn’t already confirm “85 year old woman,” my cardiologist thought he’d go ahead and give me his instructions.

A pacemaker.

On second thought, 31 is the new 90?

Evidently my feeding tube is lonely. 

As hesitant as I was to continue decorating my midsection, after further research and discussion it does seem like the little gizmo would make a tremendous difference. Unlike a traditional pacemaker that reminds your heart to beat, this pacemaker would give my heart instructions when there is a change in blood pressure, therefore supplying my organs with adequate blood - a novel concept!

Before I further my goal towards robot status, my medical fan club needs to do a few more tests to fine tune the details. How there are tests I have yet to check off the bucket list is beyond me, but regardless, this Wednesday I'll have a wire snaked up my leg and into my heart for an Electrophysiology Study, followed by assorted others in the next few weeks. 

What? That's not how YOU celebrate hump day? 

Weird.

More importantly, do you think Easy Spirits come in silver sequin?

Keep on Rolling

Oh friends, I have missed you.

It has been far too long, and there is so much to say!

Many blog posts to come, but for now, I’ll start where I left off.

Remember that last blog post, with the theme of “Try Again?”

Super. Keep that in mind, it will come in handy.

Also, do you remember those plastic balls for hamsters and gerbils and other such rodent-sized class pets?

Ya know, the ones that had a hole to insert the hamster, that when closed allowed your furry friend to cruise around the first floor?

[Also the one in which Fluffer the Haas Hamster took a casual field trip down the basement stairs, circa 1992. Fear not, he lived to tell the tale.]

The best part about the ball of wonder was the endless amusement in watching the poor hamster roll around, see something he wanted, and SMACK! realize he couldn’t quite get there in a pink plastic sphere the size of a basketball.

And, bless his sweet little hamster heart, he would try over and over and over again.

People.

I fear I have become a hamster.

I stopped treatment in June.

Yes, I realize it is August. Roll with it

[Get it….ROLL with it…]

Anyway.

It really wasn’t much of a conversation, more of looks passed back and forth across the table as my doctor and I both knew - it had been too long, it wasn't working.

I was 6.5 months into a 9 month program, and instead of improvement or at least equilibrium, I have new symptoms and exacerbated “old faithfuls.” Especially questionable given that you are supposed to feel 100% healed for the last 3 months. Oops.

So, we both knew. We knew the treatment wasn’t working, and we knew in that glance across the table that we are dealing with more than “just” tick borne illness. 

We are still missing a big piece of the puzzle.

I think I’ve known for a while, back in the deep, dark recesses of my heart, but I wasn’t quite ready to bring it to the light. Odd as this may sound, the tick borne illness offered me something that I had previously shut out as a possibility - treatment. Recovery. 

Cure?

All of a sudden I went from a yogi in tree pose on a mountain, to a pony galloping in circles around the ring.

Sometimes when I look back on my blog, I feel like a bit of a joke. 

I’m off to Mayo! I’m going to find a cure!...Wow, this is proving to be a bit harder than I thought…So it turns out I just need to relearn how to eat...False alarm - I don’t need to relearn how to eat...Ok, this is my life, let’s do this...Hold up - let’s remove a few organs, and THEN I will be well!…Hmm, not working out so well. Down a few organs, still no change...Ok, time for acceptance. I’m moving on! Life is grand!...But wait! You have a tick borne illness! We can treat this!...Aaaaand treatment is trying to kill me….Oh, and odd that I have all of these new symptoms too, must be from my treatment…Or maybe not from my treatment, or even from a tick borne illness at all?…

Open pink ball, insert hamster, sprint in one direction, run into wall.

Repeat.

If I’m not in a giant hamster ball, then I am most certainly on The Truman Show.

I MUST be a character in a movie who doesn’t realize that the entire world is watching her and waiting for her to put the pieces together.

Ya know, like a reaaaaaaally drawn out sci-fi medical mystery thriller.

With one main character.

About 23,090 supporting characters.

And scores of cookies.

Right??

Alas.

So I’m back to trying again. I’m back to multiple medical “dates” per week. I’m back to gently suggesting the medical assistant take a seat before taking my medical history, as I slowly slide over my 4 inch binder of medical records and watch the eyes bulge out of his/her head. I'm back to the land of the bizarre.  

On the plus side, I am now the topic of dinner table conversation, seeing as my neurologist and hematologist are married. I think I might start providing them with meals. If they are going to talk about me, I might as well be sure they are properly fueled, yes? I am a Certified Health Coach, after all. Greens for everyone!

Anyway.

I want to tell you that I jumped into this most recent search with much pep and gusto, but that would be a lie.

The truth is that I jumped into it much like my poor hamster fell down the flight of stairs - somewhat accidentally and with much exasperation. 

I’ve done this whole search thing. Many times. Yet it seems that every time I set my soul to live and let live and say hasta la vista to the medical world, a new organ breaks and I’m back on the medical goose chase.

Frankly, it can be a wee bit exhausting.

But the thing is, I guess it’s kind of like an epic road trip, or a Bear Gryll’s adventure series. You do hard things and go as far as you can, and then you take a little break to reboot and refuel. Sooner or later, a new challenge surfaces and you are back at it - forging ahead and avoiding obstacles.

And although I may often wonder just where I am headed, this road trip is certainly not lacking in excitement. I have to believe that I'm on this path for a reason.

I just have to.

And while it has certainly taken an adjustment here or there, I know it is a true gift it is to be able to carry on, full speed ahead, and continue on this grand adventure of life. 

On the other hand, blazing my adventurous path while safely enclosed in a giant pink bubble might not be such a bad idea...