Back to Neuro-Physio… Take # what feels like a million-gajillion!

Well… it has been a long WHILE since I wrote my last healing update! But since today was my first day back to Neuro-Physio after being gratefully on home exercises for a good long while, I feel like it’s time to check in again.

Over the past seven years of healing from the sudden (and quite honestly DEVASTATING) paralysis of Guillain-Barre Syndrome (GBS), I’ve been in and out of the Neuro-Physio hospital day program so it’s nothing new for me, at this point in my healing. Still, for my first appointment back this morning… I was a panicky wreck! It doesn’t really make much sense, my worry and nervousness, except that it does. These seven years of working toward full healing have been as excruciating on my heart and my feelings as it has on my body and the indescribable fear that overtakes me in looking back is just beyond nerve-wracking. It’s a strange thing because I know in my heart that going back to Neuro-Physio is what my brain and body need to get past this last push so I can walk properly and completely on my own again BUT even just the word ‘physio’ brings back all the fear and trauma of being so suddenly paralyzed; so many years have passed yet the terror is still so real and the fear of relapse just never seems to let me go, as I so desperately wish that it would. If I could just let the fears go, I’d have SO much more space to thrive in… but letting go is just not so easy with lived trauma.

Starting back to therapy today was a bit of a worry even in simple logistics and not just in my worry of actually being back in the Neuro Gym for the morning. I had only received the call back to the Neuro Day Program last week and lining up a pup-sitter for Play was my first panic… thankfully, his Nonno was happy to volunteer to come and stay with Play during my appointment time and extra-thankfully, is more than happy to come and care for him on all my physio days. Leaving my Play this morning was as hard for me as having to return to Neuro Gym days, at all. I’ve only had to leave Play for a couple of my own medical appointments since getting home from Southern Ontario where he had his cancer radiation treatments through February and leaving him is hard for me, even for a few hours, because I just can’t stand the thought of missing even a moment with him, especially after all he’s been through this past while. Knowing he was being cared for and doted on by his Nonno helped me settle into what I needed to do… grateful overload for that peace of mind!!

Things have changed at the hospital, like just about everywhere, with the whole Covid takeover and I was nervous of a new routine in the routine of therapy I’ve become used to over the years. It seems ridiculous, I know, but even just having to go in through a different door than before and having to go through the screening process before making the loooooong walk down the long corridors to the complete opposite end of the hospital was both stressful aaand exhausting for me. I had arrived a few minutes early because Julie, my Therapist had explained the new entrance procedures and I knew I would need a few extra minutes, i even had a couple of extra, extra moments to sit quietly in the waiting hallway to try and calm myself before it was time to go in and face the re-assessment time.

I think I was mostly worried over the initial assessment happenings. It’s not new to me by now, I’ve been through it a few times and I knew exactly what to expect for this morning, but being so critically judged on ableness is hard, even when it’s being done in order to help improve. It’s just SO hard because in feeling like I have improved and knowing how much work and struggle it’s taken to get me to even this far in healing, I also know there are still a few big hurdles to be cleared before I can be completely in-the-clear… knowing and having to actually talk about and admit to it out loud are two very different deals. I am much better at doing than at talking about it and having to talk about the struggles I still experience was a bit more emotional on me than I had expected, certainly more than I wanted as I had to fight back tears in the telling. I was actually glad when it came to the actual physical workout assessment time… which is no picnic, let me tell you!!

First, it was strength and control tests which weren’t so bad because my strength has improved immensely since way back in 2016 when I first began in the Neuro Day Program, sure, my controls still need some fine tuning with the slight attacks of ataxia I still suffer but for the most part, improvement has happened. I won’t deny that it’s been a slow healing, so slow it’s felt never-ending at times. Still, healing is happening and that is important to get to note. Next up was the hallway walk test… by far my least favourite assessment test which consists of a timed six minute walk to test distance and endurance along with walking mechanics; talk about stressful. Walking back and forth down the long hospital corridor with knowing eyes judging every movement is this introverts idea of a NOT grand time. I survived and managed the full six minutes exhausted from the full concentration of trying to do my best and most controlled walking I am capable of. I was pretty proud of that walk! I thought I did great! I really thought I did a clean, even-stride walk, that I kept straight and centred. Turns out, I still need a little more help streamlining my walking abilities.

I have definitely made great strides (pun totally intended!😂) in walking over these past years of having to learn how to walk again and have worked hard to earn being on home exercises which has made life way easier for me over the past while. Going back to hospital gym time is a little hard on my heart but it’s a necessary part of finally getting fully through, I understand that fact and to say that I’m grateful for the gift of knowing help is a major understatement. Tomorrow morning, will be spent in the Neuro gym and will hopefully be the start of what will finally return me to fully capable all on my own.

Be it like a BOSS!!

Okay... so..... I think that MANY would agree with me when I say that this year of 2020 has been proving kind of a rough deal. For me, personally, it started out harsh even before the whole COVID-19 takeover with a hard-hitting ear infection setting in on the 1st of January and directly followed that up by cracking a quarter off of a molar... and tooth loss is my greatest fear. So that was some extra and unexpected fun on top of everything else I’m still dealing with in healing...🙄

Anyhow, it was only a couple of days out from my last IVIG treatment days when I had another appointment to get to, the appointment had been made before I realized it was so close after treatment time but I figured I would be feeling better enough by then to get the brutally dreaded dentist appointment over with. I had already been angsting horribly for the prior three weeks just in knowing it was on the horizon and the thought of putting it off and angsting for even longer just didn’t have any appeal for me. When dentist appointment day way too quickly rolled around, I really didn’t feel up to going; it takes me a good seven or eight days to get back to feeling strong and clear-headed after my treatment days and I was only on day five. But I wasn’t going to let myself cancel. Like I said, tooth loss is NOT something I want for myself. When I had actually broken my tooth I was given an emergency temporary fix and I knew it would have to be properly fixed shortly thereafter but with having to work around my treatment schedule it wasn’t easy to get an appointment that worked with the dental office that is almost always booked overly solid. By the time my appointment had rolled around, the world had closed down due to COVID-19 and my tooth fix was put on hold indefinitely. But at last... there came appointment day. I knew I had to go to the dentist. I don’t like going to the dentist. I didn’t want to go to the dentist. But I was getting ready to go to the dentist. And I was spending that morning trying to unknot my tummy and hold back my fears even as I felt the tears beginning just simply from being tooooo tired from my body still fighting itself from my treatments.

Despite the teary exhaustion, the day really had started out fantastically... My boys (two Greyhounds) and I had had a quiet breakfast outside in the breezy screened room. And the summer heat/humid wave of horrendous had broken in the night which made for a morning juuuust cool enough that I could wear my ‘security-blankie’ jean jacket to the dentist without melting.

Then just when we were heading back inside the house after breakfast so I could get dressed to go, the telephone rang, it was the dental office Receptionist...

“Hi Gillian, I just wanted to call and let you know that the elevator is still not working... I know the stairs are really hard for you so if you want to, we can just reschedule your appointment for a few weeks from now and hope it’ll finally be fixed by then?”

Well, I can’t even begin to tell you the wave of relief that washed over me with that phone call! I had not only an ‘out’ of my dreaded appointment BUT a totally legitimate ‘out’ that I didn’t have to make happen on my own! I was saved. I was given sweet reprieve. I was seri’sly golden!!

All I had to do was say ‘yes, please, let’s just reschedule...’ and I could just go and crawl back into my comforting bed to sleep of the rest of my IVIG ill-effects. That’s what I opened my mouth to say....... but that’s not what came out.

“Nah, that’s alright, Imma TAKE those stairs like a BOSS!!”

And then, with the complete silence that followed my idiot statement, I realized what I had said and felt my heart beginning to race in the sudden and burning panic setting instantly in.

“I mean... I mean *gulp* I mean...” I stammered on even more idiotically, “I mean, I’m gonna have someone come with me to spot me on those stairs because those stairs are SCARY AS SHIT!!! But... yeah....... Imma do those stairs like a boss.”

Still utter silence.

And then there were giggles on her end of the line and there was even greater white hot panic on my end of the line... because what the fuck did I just say??!!!

‘Imma take those stairs like a boss?!!???’ Who says something so stupid like that?? It was clearly my “I carried a watermelon...” moment of ridiculousness. So embarrassing.

Anyhow, once I’d hung up the phone it was time for new anxiety to take over. I had to call Enz for help and we weren’t on the greatest of speaking terms just then thanks to my weakened unsteadiness that had caused me to accidentally fall and knock over the vacuum powerhead he’d left propped against the washer. He’d gotten angry that the vacuum pole might hit and scratch the cabinet or the wall and in his frustration of my always stumbling had pushed me over and out of his way to catch it before any damage could be done. It was an awful mess; he felt horrible for pushing me, I sobbed uncontrollably at having been pushed down when I still am unsteady all on my own without being pushed and we still hadn’t spoken two days after that terribleness. Knowing I had to call for his help was just NOT something I wanted to have to do. BUT when I said those stairs are scary as shit..... I’m seriously NOT joking. My dentists office is on the second floor of our local shopping mall and those old linoleum-covered concrete stairs are not an easy feat for anyone who struggles with stairs. The stairs are really high-stepped and have a little lip on each tread (one of which I caught the toe of my shoe on and started to tumble forward before Enz caught and pulled me back to steady me before continuing upward), there are linoleum bubbles in places that are not pliable and there must be cracks in the concrete beneath because the unevenness of footing is unnerving and there are two turn-landings in the dark stairwell which makes it feel creepy as well as unsafe to maneuver. 

I am generally pretty fortunate with my dentist visits because I am SO obsessively careful about taking care of my teeth and only have to go every nine months for a cleaning and checkup. Three times over the past five years, the elevator has been out of order. Once, when I was still on the walker, I’d had no choice but to turn around and just go home after Enz had called up to furiously cancel on my behalf. The second time, I had been still, using both of my Stix and slowly made my way up the stairs as I’d been working so hard on learning in NeuroPhysio... with the help of a very concerned woman who carefully followed me up every step before she raged in to tell of the office staff or not making sure there was safe accessibility in reaching their office. I wasn’t going to complain, I was just trying to deal but that lady was MAD and she let them know it before she left to wherever she’d been headed in the first place. I’d had to call Enz to come up after that appointment to help me down those scary as shit stairs and was thankful I had because I was still really shaky in learning the downsteps of stairs... there was honestly nothing more frightening in my learning to walk again than in starting down a flight of stairs knowing my legs weren’t dependable, and my anxiety was already at an all time high thanks to the first lady’s freakout and then Enz’s freakout over the elevator again not working when he came to pick me up when I was done and help me down.

Okay, so back to this appointment day... I didn’t want to call but I was, in the words of my beloved Stargate... “choiceless”, I needed help. Enz was beyond furious, not that I had called but that the elevator still hadn’t been fixed. And if you’re shaking your head at the lack of a big deal here, I get it, it doesn’t seem like a broken elevator should be a big deal... until you need one. He was thoroughly pissed off even as I said, “But at least they called to tell me this time...” “Yeah... minutes before your appointment?!! That’s ridiculous, Gillian, they can’t do that, I’m going to call them... what’s the number?”

I was, quite honestly, really pissed off about the practically always broken elevator myself but I somehow had calmed the storm that was Enz and he’d agreed to take me and help me both up and down those scary as shit stairs and he’d promised to do it without making a fuss in the office about the unworking elevator. But he was FUMING and he couldn’t help himself from (thankfully politely) inquiring as to when the elevator would finally be fixed before he left me there for my appointment. The good happening was that the scary as shit stairs hooplah had overturned the icy silence in joint upset over the new dilemma.

I was a nervous wreck as I sat in the waiting area desperately trying to calm myself from the stress of even just getting upstairs to the office and my almost fall on the first set of stairs as we’d climbed. I felt hot with embarrassment of having needed help when I’ve been getting so much stronger and I was working hard to both settle my still panicked breathing and to hold  threatening tears at bay.

And that’s when the office telephone rang.

The receptionist turned to catch my eye and looking directly at me, she said... “Imma answer dat phone... like a BOSS!!”

And we both dissolved into hysterical giggles before she had to pull herself together to pick up the telephone.

That’s when, in but a shared giggle over my earlier telephone idoitness, all was good again.

So, what’s the moral of this little big story of ridiculousness??

Even the simplest seeming tasks can feel like the most unachievable challenges no matter the situation. In not giving myself time to retreat, I pushed myself forward... even when I was still weak from treatments, ultimately that forward choice made me feel just a little bit stronger of will. And in not being too prideful to ask for help on the scary as shit stairs, well, it may seem like I sold out but there’s strength to be found in setting up for safety, too. It’s okay to take on scary challenges. And it’s okay to ask for help.

So whatever it is YOU have to do today, be it easy, be it challenging, just make sure...

to be it like a BOSS!!

Mama’s singin’ The Hugless Blues...

My mama misses hugs... she told me so a couple of evenings ago in her driveway when I stopped by to return a few containers to her. And as I sat there in my car with window rolled down talking with her from where she sat ‘safely distanced by Coronavirus Overseers (for lack of better titling) dictated standards’ on her front porch steps, I had what was perhaps a first of my lifetime moments where I wanted to be able to climb down from my vehicle to give her what she missed. At the same time, I was also grateful for having the excuse to NOT have to be hugged. But I hate seeing my mom feeling down in the dumps so I totally would have done it if I’d been allowed to.

Hugs are not something I’m comfortable with. I’ve made it a hard rule for my whole life to keep my feelings-shell intact, to keep my walls high, to keep my heart bound... yet open. It’s been a tough balance. I don’t offer hugs and I always keep myself somewhat coiled for immediate springback once given even a slight release if I find myself in a position of not having been able to shrug off being pulled into one.

It’s not that I don't want to be close and huggy and even just... comfortable ... with the people I care about, it’s just simply that I won’t allow myself to go there. Abandonment issues have grown along with me from as far back as my mind can see and for very good reason which those who know me well will understand; in one way I know that’s not a good way to live but in another way, it’s left me pretty well set for dealing in this horrible time of commanded isolation. Still, I do have feelings and worries that run painfully-deeply through my heart for others who are having down times. I’m having a really hard time witnessing all the longing for real human connection I see happening throughout my small circle while scrolling through our shared social media posts. I care, incredibly, I just have a reeaaally hard time in showing it and other than being too tall, too chubby, too annoying, too ugly with way too constantly messy hair, this having an open yet closed-off heart is really the only other thing I hate about myself. One thing I do actually like about myself is that I can always... always find an UPside to every life happening I find myself within and this Coronavirus situation is no different. The UPside throughout this ordeal, for me, has been that I can still reach out to all the people who matter so much to me. I can email, message, text and phone to check in and make sure my family and my friends are doing okay in managing through. We are sooooo fortunate to be in this time of connect-ability! When I was a teenager wayyyyy back in the ‘80s, my dad was a Lumberjack/Forestry Safety Consultant and worked in remote bush camps throughout every week which almost always meant we said goodnight to him before bedtime on Sundays and we didn’t see or talk with him again until we got home from school on Fridays... there were no cell phones, there was no internet to offer connection from afar in those days. I know it isn’t the same to stay connected through cell and internet means but I’m sure extra grateful that we have the technology we do nowadays to help us stick together while distancing..... even though virtual hugs just aren’t the same as the real ones the huggers, like my mom, are missing. Who knows? The first mama hug back to people peopling may be the only one of my lifetime I don’t try to wriggle my way out of... or it might not be, I guess time will tell.😉😂

Anyhow... I’ve been checking in with family and friends and I’ll continue to check in because I want to know that all of YOU, huggers and non-huggers, are doing okay, even in these not the funnest of times. Struggles happen for us all but an actual full-ON together struggle where we’re all in the same-ish situation, such as this one, is pretty unbelievable... even as it’s actually happening it’s a tough one to even try and understand. All I do understand is that we’re in it together and that’s a definite UPside because I couldn’t ask for a better posse to ride out this time of confusion with!

And just so YOU’ll know...

Five years.....

It wasn’t long ago, just over a month, actually... when I passed through the FIVE YEAR mark of this Guillain Barré Syndrome journey that has changed who I am, so completely. I’ve learned things about myself over these past years spent in the ‘slow lane’ and though some of those personal revelations have lifted my heart in gratefulness, others have dropped it in shame; still, between the two, I’ve managed to keep mostly grounded so that’s a good thing, I think. 

As anyone who has read even just one of my blog posts will know, I have an annoying tendency to ramble... I’m going to try not to ramble on too terribly in this five year GBS update. Sometimes it’s hard to be quick in sharing my climb back up to healthy; I write about it because it’s hard for me to talk about it and I need to be open about all that’s happening with the people who mean everything to me... my family and my small but MIGHTY friendship circle of absolute beautiful.

Through these long five years of working to regain all that I lost in those sudden moments of going from healthy and strong to stuck in that hospital bed with paralyzed legs, arms and hands... I’ve had no other choice than to find a different ‘strong’ that I didn’t even know I had within me. I've tried to never complain of how hard it’s  been in being forced to relearn all the basic life skills that used to come so easily because I’m SO incredibly beyond grateful just to be moving more confidently again, at all. But although I am careful to not complain, I’m also very honest with myself, as well as with others, in the undeniable fact that it has been a HARD five years, a scary five years, a devastating five years. There’s no pretending that any part of this healing journey has been easy for me but working my way through has given me so much more than it’s taken of me and for that, I just can’t complain.

I was reminded by someone a couple of weeks ago, while out for coffee, that I’m not who I used to be and that I shouldn’t still have my usual happies, “...How are you still always smiling and laughing at everything??!...” she asked me in disbelief while sending across the table to me (my Stix propped up by my side) ‘tsk-tsk-sorrow-filled’ looks at my continued struggles (even slight as they are now). And I get it, I’ve heard tell, all my life, about sad feelings and people who deal with feeling less-than and like life is just unfair, especially when illness hits... but I’ve just never personally known any of those kinds of feelings. I’ve been sad when there’s been a legitimate call for sad in my life and I’ve been mad when that’s called for, too, but the vast majority of my life is spent smiling and laughing, even at the dumbest things because I always just feel happy inside. And so, “What’s NOT to be smiling and laughing about??!” was my answer to her question. I mean, there I was... out at a coffee shop, in the middle of winter having walked in with using only one of my SideStix to help steady me. I wasn’t in a wheelchair anymore. I wasn’t on a walker anymore. I was depending only on a sole Stix. And I felt strong and capable and overjoyed in such a huge win. I know and I see that people look at me differently now. I see the sadness and disbelief in the eyes of friends who knew me before the GBS took me over and sure, it makes me feel like I’m a disappointment for a minute or two, like I’ve somehow let people down in having been taken down with sickness but who I really am is still strong even if my body isn’t quite there yet. My Faith and my trust in maneuvering this life path that I had no part in deciding to be on, is strong. 

I don’t want to let anybody down in seeing me still not quite up to snuff but it’s important for me to not hide the hard parts and only share the easy parts otherwise I’d be letting myself down. My happiness doesn’t always override my struggle. My spirit is strong... so is my fear. And it seems like the closer I get to being all better, to finally again getting to walk on my own... the more terrified I get that my legs are going to stop working again. The nightmares started a couple of years ago and have been getting worse, almost nightly I bolt awake from anywhere between two and four in the morning trying to catch my breath with tears streaming as I desperately poke at my legs to make sure I can still feel them. It takes hours of listening to my gentle musical inspirations to settle me after the nightscares but eventually, I do settle, I settle right back into ‘...it’ll work out or it won’t...’ mode but I never get back to sleep and being constantly tired with all the physical therapy work I still have to do is rough. The waking panic moments started last winter when I began getting actual feeling back in my legs... those same dental freezing type tingles were the last feelings I had in my legs before the paralysis deadened all feeling and then suddenly, those same feelings, along with extreme stabbing pain, were back again with my nerves finally beginning to reawaken. The fears of relapse threat are very real and I am emphatically reminded by my doctors at each visit that I have to be very careful not to get sick with my weakened immune system in avoiding another relapse. Even a hint of a cold, a flu, a virus of any sort could be catastrophic for me in relapse while I am still healing. The only way I have of combatting these fears is through my Faith and through just simply remaining true to my nature. So, I’m always going to giggle-fit at dumb stuff. I’m always going to be annoying in finding funnies when nobody else can see reason for them. And I’m always going to find the gifts that the struggles are teaching me.

All in all, for as hard as these five have been, the goodness is still outweighing the awfulness, even in the simplest ways. At Christmas time I could only carry a half-filled coffee mug from the kitchen to the living room and it took all of my concentration and stop breaks to steady myself from spilling or falling, and if I reeaaally wanted to just sit with a regular full coffee mug, I still had to ask for help in carrying. Trust me, I have learned though all of this that there is no shame in asking for help BUT today I carried a FULL mug of hot coffee from the kitchen in to the living room all by myself... I have to do a two-hands carry, I have to concentrate SO hard on each step while also concentrating SO hard on keeping the mug steady as I work to keep my body steady in balance. It’s a slow carry, it’s an awkward carry but it’s a carry and it’s just another little confidence win. That such a small thing, something as simple as carrying my own full cup of coffee across a room can fill my heart with proud, well yes, I know it sounds ridiculous. Believe it, or not, though... this is not the end of my coffee-carry goals; I still have my sights set on coffee-carries in my cozy morning slippers, I’m so afraid of spilling coffee on my beloved Uggs that I slip them off for coffee time but hopefully, soon I will be confidently capable enough to handle all the coffee coziness of morning time awesomeness without fear of ruining my favourite comfies.

The littlest things matter.

Looking back, I felt really small at the coffee shop that evening... for a minute..... but then I realized that it wasn’t my small to feel.

Yes, I did lose an awful lot when I got sick BUT... I’m still working hard to get it all back, and I’m always going to find my happies.

The IVIG treatments are hard BUT... being gifted with them is a blessing from so many helpful hearts.

I may still toddle and trip a little BUT... I’m walking again.

My cursive handwriting is still unsteady and barely legible BUT... my printing is clean and steady.

My hands still don’t want to work properly in trying to hold guitar notes BUT... I can play my fiddle.

I still can’t ski or skate BUT... I can go sliding.

I can’t safely carry a boiling pot of pasta to the sink for draining or a hot casserole dish from oven to counter or hot dishes from kitchen to dining room when my family is over for dinner BUT... I can ask for help.

I have way too many BIG small happenings to be grateful for. And pretty soon, I’ll be carrying my full mug of coffee without painfully  chilly tootsies, too!

It’s been a really tough five years but healing is happening, confidence and capability right along with it. It’s sometimes hard for me to see how far I’ve come on the healing road but when I really let myself look back, I can see it and I’m proud to have stuck it out, even in times when I wasn’t sure I could.

From the days when I had to be on a walker to play outside with my boys.....

...to the days when I was so proud to be off the walker
and had graduated to my SideStix.....

...but was still too embarrassed to venture out in the neighbourhood
and would only walk to the end of the driveway and back..... 

...to double Stix walking along the camp shore with my boys.

...to single Stix walkingdown the camp road with my boys!

Always finding the joy, even in the simplest of ways, just works best for me.

It’s treatment time.....

It’s taken me a little time to write this update, not because I wanted to hide a not-so-fun time in healing but because admitting to weakness is just something that doesn’t come easily to me.

I’ve kept an unbelievably tight lock on my feelings, really for as far back as I can remember. My earliest memory of such was on a day when I was really small, I’m guessing I might have been around four years old... I remember I was kneeling upon a kitchen chair at the kitchen table in my childhood home with my crayons and colouring book and I remember being so content in that one moment. And I remember my mom having left the kitchen to check on my brand new baby sister and I remember starting to cry... When my mom came back into the kitchen and saw me crying while continuing my colouring, she tried everything she could to get me to open up and tell her what was wrong and why I was suddenly so upset... but I couldn’t let myself tell her. I knew that day, exactly what was hurting my heart enough to make me cry just as surely as I still know and feel it today looking back through the long years that have passed. I don’t have very many early childhood memories, at all, most of my memories start from around when I was eight, but there are a few earlier ones that are filled with just SO much emotion they’ve stuck with me. Having seen my mom so upset in knowing that I was upset taught me to be more careful, even at that incredibly young age. I’m starting now, at the ripe old age of forty-six, to see that bottles aren’t maybe the best holders of feelings. Still, it’s hard to open up when hard moments are had.

And my first IVIG treatment week, well, those moments were hard.

I was grateful to not have a lot of time to stew over my IVIG treatments beginning. I had less than a week between the Neurologist appointment when treatments were ordered and the day my treatments began at the hospital. During the almost weeklong wait my emotions were everywhere and tears hit me often and without warning throughout. I had never even slightly expected to be starting treatment this far along in my healing so that was a shock in itself, but I think the tears finding me was even more of a shock because crying just is so not me... y’know, bottler of feelings and all. Anyhow, the tears that kept hitting me were for so many different reasons, it was confusing and figuring out on-the-fly how to deal with so many feelings was pretty brutal. I had tears of relief that help was still available, of regret that a horrible misdiagnosis had stolen my first opportunity for treatment, of hope that I might get back to my old self again sooner than never, of fear over not knowing how my body would react to the treatment, of worry over not knowing what exactly was going to be happening during the treatments but mostly my tears were those of an indescribably thankful heart.

Day One of IVIG treatment was both okay and not so okay, at the same time... but my GRATEFULNESS was seri’sly and far beyond over the top!! I hadn’t been told anything on the treatment procedures so I had been very nervous going in without knowing just exactly what to expect. I had, like most in this age of on-line information would, searched Google and YouTube for IVIG treatment how’s but didn’t really find much that was helpful or anxiety-easing. The few videos and articles I did find were more of ‘complaint videos’ which kind of just added to my nervousness so I ditched the search idea after only a few moments and decided to just deal with whatever was to happen... as it was to happen. Please know that I am NOT judging anyone for sharing only the awfulness of their treatments... it actually turned out that I had some awfulness, too, it’s just that it really angsted me out and I had wanted to go in to the hospital feeling ready and hopeful rather than scared and dreading. But I was scared and I was dreading.

All I had been told from my Neurologist was that the first round of treatments would be done daily for five days and could take anywhere between two and six hours each day for the IVIG infusions. I’d prepared my hospital activity bag with some of my greatest comforts; crossword books, sudoku books, my favourite four-colour click pen, I’d even made cheese biscuits that morning to bring along for an easy-on-the-nervous-tummy snack with grape juice boxes for a treat drink... aaand I brought with me my beloved Aviator headphones and my Dennis Parker CD of serious awwwesomeness ...more on that in just a little bit.

It was already quieting down when we arrived at the hospital for my 4:30 appointment, and I was happy for that because my soul just does better in quiet. Enz was true to his word and had me to the hospital ON time and WITHOUT snarkiness so things had started out well! After checking in and getting all hospital-braceleted up, a nurse came almost immediately to bring me back into a treatment room and helped get me settled comfortably on the stretcher while explaining what was going to happen and getting ready to get my IV started. I felt immediately at ease with how relaxedly confident and genuinely kind-spirited the nurse was but my skin and vein were not nearly as impressed as my hand fought hard against the IV insertion. I had honestly expected the IV going in to be the easy part, I’ve never had an issue with needles and my pain threshold is so high it’s actually scary at times, I can deal with pain as long as it’s my own... I just can’t take the pain of seeing anybody else hurting. But the pain of the nurse trying to get that needle in me was PAIN, an extra ‘fun’ symptom of hypersensitive still healing nerves, I guess. I was able to hold myself perfectly still, I didn’t flinch in the slightest but tears did well up and quietly roll. The nurse apologized as she pierced and wriggled and angled to try and get that IV needle set, and she almost had it, blood flow and all... and then it was gone. The nurse felt sooooo bad and didn’t want to do another try and even though I assured her it was okay and promised her that I wouldn’t pull away and said, “God bless the hands that sometimes have to hurt in order to help...” She still couldn’t give it another go and called in her teammate to try. In the end, it had taken the two nurses and four very painful pokes to finally find and secure a cooperative vein but eventually and thankfully, it had happened.

Once the IV was set in my hand and the IVIG infusion had begun, I had a feeling of relief finally find me, for the first time in days. Treatment had started and it wasn’t anywhere near as scary as I had stewed over in ‘possibilities’. Things started out just fine for the first couple of hours, aside from my hands being sore from all the IV insertion fun, I actually felt relaxed and comfortable in the cozily dimmed-light of the small room; I had Dennis Parker talking and singing me through the hours so all was good. But sudden exhaustion set in for the last half hour and the dizziness mixed with the threat of pukage and piercing headache that followed for the whole ride home and overnight wasn’t so fun. I’m not generally selfish enough to pray for my own self when others are far more worthy of my prayer time, but I had been selfish enough that morning to ask God to just please help me through with no awful side effects so I would be ready to take on the next day without the fear of the first day; I guess He maybe was teaching me another lesson in strength by not answering my selfish prayer. I was definitely NOT looking forward to the rest of the week but I still held hope that it would be a little easier as the days went on. There was one really great thing about the first treatment day being finished and that was the fact that I knew I wouldn’t have to go through another IV insert the next day... the nurse had wrapped my hand all up to keep the IV safe and secure overnight and assured me it should be good for the week, WHEW!

Day Two of IVIG  was a little bit tough to rally myself for after having experienced the side effects of my fist treatment day. Thankfully, my headache and nausea had settled out during the wee morning hours so except for the awful deep-aching pain hat had set in  across the backs of my shoulders and my neck I was feeling much better. I was still a might apprehensive upon hospital arrival but once the nurses had gone through what had happened during my first treatment session and the effects I’d dealt with afterward, they decided it was best to slow the drip rate to try and avoid any of those side effects from happening again... it took just a few minutes under three hours for the infusion but other than still feeling brutally tired afterward, I felt SO much better than I had the day before. I had learned on the first day that puzzle books were not going to be helpful as a time-passer because both my hands were just hurting too much to even hold a pen, nevermind try and write with one. But I wasn’t bored or lonely because I had my hero, Dennis Parker, talking and singing me through with his beautiful and inspiring Songs Under The Air Condition ing Unit CD. The only real downside for my second treatment day was another side effect that happened, which apparently can but doesn’t usually cause  too much trouble. My vein decided after two-and-a-half hours that it had just had enough... it rebelled and it was not fun. My vein started cramping and clamping in trying to fight against the treatment and led to such intense pain that I was almost afraid I was going to have to pull it out before the nurse came back. I only had about a half hour left so she stopped the infusion and flushed the IV before starting the drip again in hopes that we could finish the treatment without having to start another IV right then, that my veins could get a little break to rest before putting another in for the next day. I sure wasn’t looking forward to another IV insert, at all, but hoped that maybe it would go easier the next time and I was sure happy to not have to keep one in again overnight because it was actually quite painful to even move my fingers with the IV in... and it was horribly painful having to walk and balance with my Stix... that extra pressure was tear inducing intense and Enz was not impressed that I needed lots of walking breaks to rest my hurting hands.

Day Three of IVIG was a MUCH better treatment day! And WHEW, did I need that win! The IV had been a stubborn insert but with a bit of struggle-maneuvering had gone in and set well on the first painful try. I settled quickly and got lost in my Dennis Parker CD as Enz got busy with the non-stop work phone calls he had to deal with. The drip rate was kept at the slower rate and the nurses marked it in my file to be kept that way, so I had no nausea moments or even  hint of headache! I only had two more days to finish up the first treatment round and then it was to be a... four weeks of break, two days of treatment routine ...on repeat for the following six months. I knew I could totally handle that, especially since we had comfortable treatment drippage rate figured out! Each treatment was taking three hours to get through which was tiring and not exactly a grand time BUT was getting easier to deal with as the days went on so all was well. The two days of treatments every four weeks will be a little bit longer ones because the doses are set to be a little larger but I had grand hopes, while leaving after my third treatment, that smooth sailing would only continue as time would go.

I wasn’t so comfortable walking out with another IV in my hand but at least it was on my right Stix side which doesn’t require as much weight-bearing for stability help as my left side does. Still, I couldn’t make it very far, very quickly and ultimately, Enz got frustrated and just went on ahead telling me he would pick me up at the front door; I figured his patience was running it’s course after three days of long treatments, even though he was getting a lot of uninterrupted work done while sitting with me. It was actually a little hard on my heart to feel like I was having a ‘set-back week’, too. I had been working SO hard on practicing my walking and working my endurance back up,.. and I’d been doing reeaaally well with even getting confidently around in stores (even busy, crowded ones) with only one of my Stix so to be back using two during treatment week weighed on me. But I was so tired and wobbly, my hands were hurting from the IVs with the pressure on the handles and movement while walking that I needed the extra balance help in avoiding a fall. Extra burdened feelings I didn't need, though I did have to suck up the disappointment in myself and tell myself that it would all be okay again soon... and maybe even better.

Day Four of IVIG found me I with my hopes set on a super easy treatment day and it actually started out quite promising...... A man named Garfield was called back a few minutes before the nurse came to bring me back to the treatment room. I was over-the-moon-tickled-to-bits-elated at just hearing his super cool name and found myself momentarily lost for words as he quickly hopped up and wandered back. I was so beyond bummed that I wouldn’t be able to tell him how absolutely fantastical I thought his name was... which I told to Enz who just rolled his eyes and told me I’m ridiculous... BUT seri’sly.... never, In my life, have I ever met anybody named Garfield! And then, after only a couple of minutes, Garfield was sauntering back through the waiting area on his way out! “Cooooolest name... EVER!!!!!” I piped up loudly in my glee as he neared me and i was just SO seriously excited to be able to tell him I thought so. He just brightened right up and thanked me with an honest, eye sparkling chuckle of surprise... totally made my day and I just knew it was a sign that it was going to be an awesome treatment visit!😊

I was wrong.

Things had started out okay, I was once again pulled into the struggled healings my hero Dennis Parker so graciously shares, but after about 20 minutes I started having some serious pain as my vein, like on the second day, started to fight against the treatment. It started cramping and my whole hand started throbbing... conversation with Enz had followed like this.....

“Ohhh, it’s starting to hurt like last time...”

“Should I get the nurse?”

“Maybe it’ll stop...  I think it might be stopping a little, act’lly.....”

“Are you sure?”

“No... it’s getting worse... but I don’t want them to think I’m being annoying.”

“I’ll get the nurse!”

“Okay, but just look out the door, don’t bother them so... *hyperventilating tears as the throbbing, cramping pain shoots through the vein up my arm feeling like it might burst* ...so they won’t hate me.”

“Okay, I’ll just wait here until some...”

“GET SOMEONNNNNNNE!!!!!”

And boy did he run! It’s actually suuuuuper funny now that it isn’t feeling like my arm is about to explode with searing pain.

Anyhow, the treatment had to be paused, the IV had to changed to a new site, I came dangerously close to puking from the pain which left Enz ready to bolt again each time my eyes even dropped toward the puke bowl they had ready for me and I had to dry my tears of disappointment in myself for holding up treatment and being a pain. The nurses both assured me I had not done anything to cause upset and that it was all okay so that really helped me feel better. The. They propper’n’wrapped my arm and hand all cozily up in heated blankies to help keep the treatment receiving site comfortably happy in hopes that it wouldn’t start to rebel again. Hooray for caring nurses who help us through rough spots!

I was so grateful to know I only had one more day for the first round... and that last day was going to be a good one, I just knew it..... mostly because I don’t really think it could have gotten any worse at that point. An adventure of a week, treatment week was sure proving.

Day Five of IVIG well, WooHooooooo... treatment week ended on a good note!!! The IV remained comfortably in from the switch up during the prior days treatment awfulness and I had not even a tinge of pain throughout infusion time which was a HUGE relief since my tummy had been in knots of dread since leaving the hospital that last time. The nurse propped my arm up on one warm blankie and wrapped another around my arm and hand to help keep it cozy and comfortable like they had the day before and it really seemed to help so I will remember that helpful tidbit for the next round. Dennis Parker kept me inspired and grounded through the long and tiring hours and I was SO beyond grateful that the long treatment week had ended on a comfortable note so I wouldn’t be angsting over having to go back the next month for another treatment round. It was certainly a much rougher week than I had expected but we made it through and I am incredibly GRATEFUL... for the treatments finally happening and for all of my friends and family who helped me get through with so much caring and encouragement! I especially want to say a MASSIVE thank you to all the selflessly incredible Blood-Donors who are beeeeeyond awesomeness and I am beeeeeeeeeyond grateful for!!!

Okay... so I know I promised more on the Dennis Parker CD front but that’s going to take a whole post in itself. I do promise to share the awesomeness very, VERY soon