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
