i'm wearing my thrifted polka dot shoes today. aren't they spiffy?
they make me smile and they remind me to just take this journey one step at a time. as it turns out, they are also a super snazzy way to jazz up a hospital-issued wardrobe.
so here's the thing - i'm sitting in the hospital awaiting a CT Scan right now. for me. i've been struggling with some pretty debilitating symptoms since mid-january. primarily, intense pain and pressure in my spine, vertigo, nausea & increased vomiting (as in i'm vomiting more than the nightly vomiting episodes that have plagued me for 3 years now)
aside from the vomiting, the rest are all new symptoms for me.
we haven't talked much about my struggles the past 4 months for several reasons...
...for the first few weeks we just thought i had a really bad flu. which at first made sense - after all, my symptoms were "new to me" and came on suddenly. on a wednesday morning in mid-jan, i was woken out of sleep by intense nausea and back pain, within hours i was vomiting. however, as january ebbed into february, the pain & pressure in my spine increased and i became so off-balance that i had difficulty walking. as a result, i was unable to get out of bed for most of february. as my functionality began to diminish, the hope that this was nothing more than the flu faded away.
...and then it all just felt too surreal & too unbelievable to consider that sparky and i could possibly be in relapse within a week of each other. (my symptoms began the week before he fell ill again.)
...because coping with sparky's relapse took all our emotional sharing quota - there is only so much you can publicly bleed about at one time.
...because there have been more questions than answers and everything has been about as clear as mud.
in march, i was seen by a local doctor who suspected that my spinal pain & pressure was infection related. (i also had elevated WBC) he prescribed antibiotics. within 72 hours of starting the antibiotics, my symptoms intensified so greatly that all i could do was lie on the bathroom floor and puke and cry. the hubster put in an emergency call to our LLMD, DR H. with sinking hopes, we suspected that the sharp increase in symptoms was most likely a herx...an indication that my symptoms were most likely lyme-related.
however, DR H was concerned that my symptoms were also strongly indicative of another condition. (lyme often mimics other conditions) my doctor here agreed and they both felt this warranted further investigation and felt it was necessary for me to undergo several tests to rule out the condition my new symptoms are indicative of.
so that is where i'm at...in probable relapse alongside my son. today's scan will either confirm my relapse or reveal another condition. affirmative results in either direction will be difficult to face. this journey is so difficult to walk...but i'll just keep moving through it one spiffy step at a time.
The "IS" factor is what put me in the hospital.
CELLUTLITIS
PHLEBITIS
VASCULITIS
BABESIOSIS
i first noticed slight twinges of pain in my arm on Easter Monday afternoon. By evening it was really sore and there was discharge leaking out of the insertion site. this concerned me but at that time my arm was not red (a sure sign of infection) and my home care nurse was scheduled to come by the next morning so i felt it would be fine to leave things until the morning.
by the next morning (Tuesday) my arm was puffy and swollen. i had developed a painful lump under the skin near the insertion site and a lot more fluid had leaked out. the discharge appeared to be lymph fluid. my home care nurse was concerned but since my arm was still not red (and i've had lymph fluid leak out before), we both felt comfortable taking a 'wait and see' approach.
however, she left me with explicit instructions to immediately go to the ER if my arm became red.
my arm started to get red that night at supper but since the redness would come and go, i didn't think it warranted a trip to the ER.
i woke up in the early morning hours of Wednesday feeling extremely toxic. it's hard to explain the sensation other than to say i felt like i had been poisoned.
i was sweating from head to toe. the night sweat thing is not at all a new thing except that my sweats are usually concentrated around my head, chest and stomach. this time around my ENTIRE body was soaked... even my toes were dripping.
additionally, my temp was elevated and my hand tremors were really exacerbated.
but it wasn't until i tried to get up to dry myself off that i realized something was really wrong. i was completely off-kilter and insanely dizzy. this was totally new symptom for me. i have never experienced dizziness like that before. when i tried to sit up in bed, i fell over. i could barely right myself. when i finally did i just sat in bed for a long time trying to steady myself. after a long while, i felt in control enough to stand up. however, upon standing, i immediately collapsed.
about that time i figured i might have a problem.
a call to my home care nurses confirmed that. they immediately sent me to the hospital.
the short of it IS this:
lymph fluid pooling in my arm caused the CELLUTLITS which then triggered a case of PHLEBITIS which may or may not have been caused by my VASCULITIS which was exacerbated due to a flare in my BABESIOSIS infection.
(now say that 10 times fast!) lol
the long of it IS this:
stagnant lymph fluid is a breeding ground for bacteria.
when it comes to bacteria, i have a "welcome" sign stamped across my forehead.
cellulitis is a bacterial infection.
now you can see where this is going.
naturally, i developed cellulitis!
the cellulitis triggered a case of phlebitis.
phlebitis is a fancy word for vein inflammation.
phlebitis causes your veins to spasm.
these rhythmic and painful contractions are similar to how labor feels.
basically it feels like my arm is in labor.
my vasculitis is triggered by my babesiosis infection.
my babesiosis was excerbated because i had just ramped up to my full dose of alinia.
alinia is the new med DR H is using to attack my Babesiosis infection
the full dose of alinia triggered a massive HERX.big time
and now you have the long and short of the "IS" Factor
The Gravity Defying Week.
Overall, this week has been rough. Out of this world rough. I have been herxing. I have had a whole meteor shower of ugly symptoms rain down on me. I have been surrounded by a gravitational force field so strong that it left me encapsulated on my couch. This force field hijacked my energy and my mind. My fatigue has been so profound that I could have stepped foot on the moon without a space suit and they still would have had to scrape me off the surface.
I even broke the cardinal rule - I missed a dose of abx. In 16 months of treatment, no matter how sick or miserable I was, I have NEVER missed a dose. Never. This week I did.
While my body has been tied to my couch by this freakishly unearthly gravitational pull, my mind has been free floating through space. I have had a million thoughts swirling through my head but my ability to reign them in long enough to cohesively form a sentence has eluded me. I've tried to write but I have just laid here, blankly staring at my screen.
My neuropathies have been out of this world on the richter scale of pain. Ever tightly squeezed an ice cube in your hand? The icy cold painful burning sensation that that produces is what my nerve pain feels like to me. Full body. No relief. No release. An incessant barrage of icy burning, tingling pain.
And then there were the drenching night sweats. Internal head pressure. Ringing ears. Swelling joints. Shortness of breath. Criss crossing eyes. Quivering kidneys, liver and collicky gallbladder. Twitching, twittering muscles and limbs. Come to think of it, I suspect these crazy body hijinx are similar to the sensations that astronauts experience upon re-enty into earth. (minus the profuse sweating - they'd drown in their space suit).
I suppose each day of treatment brings me one step closer on my journey to re-entry too.
