Ok. Here it is folks. My early notes from my book on my battle with a crippling neurological disorder. What is written here within this blog, is just what I have written so far. Still alot to input throught the entirety so keep in mind this is an unfinished piece of work.
This was originally written as a form of psychological therapy. Then the idea was posed to me to somehow cultivate it into a possible book. Then as I thought about it, I thought it would prove beneficial for others who were afflicted with this neurological disorder with reading a book authored by someone who wrote from a patient's perspective, giving the insight of their physical, mental & emotional states. I even done some marketing research on this. Finding a book on Neuropathy, as well as a book from the patient's perspective, was like finding a needle in a haystack.
As the quote goes:
"Sometime you have to walk through Hell to get to Heaven" - Author Unknown
Just as a warning, the content may be hard to read for some...
Early March 2009: I was changing the corroded old barbeque burner for a new one. When I was finished changing the burner, I attempted to get up out of my lawn chair and fell to the ground, forcing myself towards the barbeque...assuming it was my knees again which has been an issue for the last twenty-one years.
I’m unsure one the date but I worked a night shift with D shift. Keep in mind this was two months after I took time off because I was feeling burnt out for the last eight months or so. I didn’t get called in until 7pm. I finally showed up around 8pm. I come in to the lab. As I walked in, Kelly looked up from what she was doing and says “God, I missed you!” Can you get a welcome back greeting better than that? Ok…ten hours pass. Its 6:30am. A shift comes in. Annette S has a big smile for me. Gary C comes over and says “Missed you…Brother!” When Annette A comes in, she came over and gave me a big hug. After the fact, I often wonder, did Annette A know or notice something that I have not? Did she know things were about to go terribly wrong for me health wise?
Monday March 23rd 2009: I was scheduled for, and working a twelve hour night shift. All of a sudden I could feel a strange feeling in my right lower leg. Around midnight or so, I decided to leave, once appropriately covered, around 1:00am due to me literally dragging my right leg.
Between March 24th & April 21st 2009: My ability to walk had significantly deteriorated day by day. Also I was eating less and less as the days went by. In afterthought, I felt like I was dying more and more each day as I was eating less and was incapacitated on the couch and unable to even walk to the washroom. Mentally, I was completely prepared for this to be my final existence before dying.
April 2nd 2009:
MSN Conversation
“Me: I’m getting a doctor’s appointment tomorrow.
Annette: For Why??
Me: That night Peggy covered me, since then I been having knee issues.
Annette: Ewww! Not good. Keep us posted to let us know what’s going on, eh?
Me: I will…I will text you.
Annette: Ok. Make sure you do.
Me: I will…In the meantime, I won’t be back for a while.
Annette: Well then you make sure you keep us posted.
Me: You will be the first to hear…you know more than Adecco.
Annette: I doubt that. Peg seems to know all.
Me: You are first to hear about this…except for the conversation I had with Debra about an hour ago
Annette: Oh ok. I won’t say a word. Will let you tell who you want. Sending you for x-rays or just going to see him to set stuff up?
Me: Gonna set it up…Hoping for x-rays…see if it’s related to my childhood ailments.
Annette: What happened when you were a kid?
Me: I was born with fallen arches…Couldn’t walk until I was three years old…I was supposed to have one leg fixed when I turned 18 years old…not sure which leg it was supposed to be.“
Tuesday April 21: At Approximately 7:00am, I called 9-1-1 to have an ambulance come take me to BGH Emergency. I am undergoing an enormous amount of testing, including MRI, CT Scans, Ultrasounds, X-Rays, Blood & Urine tests. I am lying on a stretcher for fourteen hours in a hallway until they finally decide to place me in an area to sleep till my 7:00am transfer to KGH the next day.
Wednesday April 22nd 2009: On this morning I am transferred to KGH Emergency approximately around 9:00am. The testing cycle resumes. They have begun with the routine blood samples....then with prodding me with a steel needle to test the sensitivity of my nerves in my hands, arms, feet, and legs. They test the elevation capacity of my arms and legs. Then they applied adhesive electrode pads to various locations on my arms and legs in order to send electric pulses to gauge a reaction rating. They then made it be known to me the intention of the day’s agenda being later in the day, an attempt to drain fluid from my spine to be analyzed. Once my team of specialists had left my bedside, it’s at this point that I begin to reflect on the severity of my impending, daunting task that lies ahead of me. It’s at this point where I start thinking about the downward spiral I am currently immersed in, what I’m putting all my family and friends through. Which had caused me to lose control of my emotions, bringing me to tears. At this point, my lead specialist walked in. He says to me “I know it must be difficult dealing with something of this magnitude but we will do our best to get you through this.” About an hour later, they attempt the draining of the spinal fluid for testing purposes. At first they attempted the procedure at bedside. The procedure entails freezing my back with five shots before injecting a needle in my spine to drain the fluid. The procedure so far is a total failure. Then they decided to attempt to do the same procedure utilizing an X-ray. For two and a half hours of enduring this arduous procedure. By the end of it, my back felt like a dart board and from the waist down I felt like I was hooked up to an car battery as every time a needle gets too close to a nerve, it sends an electrical jolt through my body at specific body parts related to the nerve in question that caused me to flop like a fish out of water. As it was a failure as well, they finally left me alone for the remainder of the day. Imagine my discomfort months later watching this getting played out on an episode of House.
Thursday April 23rd 2009: I have done a full body X-ray, after lunch they decided to move me from Emergency to a room on the Neurology floor. Its at this point they started giving me daily needles of Heparin to prevent blood clotting due to my incapacitated state. Gee, I’d love some more needles in my stomach. Yes! More of my sarcasm. Its only taken me about a year for my Heparin bruising to finally dissipate.
Friday April 24th 2009: Had the usual morning ritual of the daily blood work. In the afternoon I had my initial meeting with the KGH Physiotherapist. After a physical assessment, she had stated that I had progressed or improved quicker than expected. Later I was told that the following day I was to undergo an eye exam in hopes of curing my heavily blurred vision.
Saturday April 25th 2009: After breakfast, the eye doctor came to get me for my round of tests to rectify my blurred vision issues. He comes in with a wheelchair that resembled a Lazy-Boy chair. He wheeled me to the examination room on a different floor. He ran me through a multitude of eye tests. Kept putting this liquid into my eyes He wheeled me back to my room where I got back into bed. The eye solution has caused more blurriness. The blurriness had caused me to suffer from severe nausea. I was unable to eat my lunch. I asked my nurse for a Gravol. I took it and slept for most of the afternoon.
MSN Conversation
“Annette: Hey are you really there”
At this point, I was in fact not there, as my sister was managing my Facebook, E-Mail & MSN Messenger while I was in the hospital. But no one was aware unless my sister had told anyone so
Sunday April 26th 2009:
MSN Conversation
“Annette: You there?
Annette: You there yet???”
My mom and my uncle drove up to Kingston to visit me. My mom brought my cell phone and charger. Once they left, I started texting to let everyone know what was going on with me. Then the moment of truth had finally hit. I had finally texted Annette S. I was rather impatient and apprehensive concerning her response. I proceeded to tell her all that had gone on. At this point she began admonishing me. Questioning why I never said anything until now about my condition.
Editorial Note: …Ok. I write this now after the fact. I guess its weird even to me. I don’t know if it would be considered a bout of depression or not, but in all likelihood, if I had not been communicating with Annette through MSN Messenger, e-mail, and text messaging, I likely would not be here today. As calloused as it is to say, its what I believe in my heart and soul…
Monday April 27th 2009: As per my usual, the daily ritual of morning blood work and post-breakfast visit by my attending residents. We had discussed all the issues with my blurred vision and the possibility of me having this rare chronic disorder called Gilliane-Barre Syndrome. That’s when I requested to have a printout of the description of the disease from the medical journal of choice. I also was paid a visit from the KGH dietician to educate me on Type 2 Diabetes.
Tuesday April 28th 2009: On this day, I was to start my first physiotherapy session. They gave me a second hospital gown to cover my butt and underwear. They are taking me for a walk in the hallway. I felt okay but shaky making it ten feet down the hall and back to my room. In the afternoon, they get the guy across from me dressed to take his walk. After his walk, he started to bitch about having to get dressed for his walk. I started ranting “What In The Hell Is Your Problem?!? At Least They Let You Get Dressed! They Parade Me Around Like A Piece Of Meat!” His daughter started laughing. This was my first attempt to be in a joking mood through all of this. Till I did, I was essentially going through what existence of a life I had at the moment being a shell of my former self.
Wednesday April 29th 2009: *MY BIRTHDAY* The infamous 36th birthday.lol. I did the usual morning routine. Around lunch time, a couple nurses brought me my lunch. The nurses who brought in my lunch, also brought me in two cupcakes on a birthday napkin…I somehow envision this is how a scene would start in one of those cheesy 80’s nurse adult movies.lmao
Tuesday May 5th 2009: Not an overly eventful day. My usual routine, for the most part. Add into it, the last Physiotherapy hallway walk in my socks, slippers, underwear and hospital gown. God I live the wardrobe choice…sense my sarcasm? They could at least turn up the heat a tad bit. Gets a tad bit chilly in a hospital hallway when you don’t got pants you’re ALLOWED to wear! But I digress…One of my regular nurses comes in to take me to get weighed so she can finish up her report that she has to send to Belleville for my transport tomorrow. I was told I need to start getting ready for my transfer to Belleville General Hospital’s Rehab department.
I can’t end my telling of my time in Kingston General Hospital without a final funny story. One of the nurses came in to give me a final IVIG (Intravenous Immunoglobulin) treatment. We get talking for a bit. I said I was starting to run low on underwear so my mom brought me up a pack of briefs. Suddenly she says “I don’t know what it is, but I have a thing for tighty whities.” So I slowly slid my blanket up my leg. She gave me a swat and told me to behave.
Thursday May 21st 2009: *MY RELEASE FROM BGH*
MSN Conversation
“Me: I walked with my walker from my hospital room to my uncle’s car.
Peggy: Wow! That sounds good.
Me: The nurses call me Mr. Independent
Peggy: Now I can tell Ed tomorrow that I have talked to you and that you are home. He is so worried about you
Me: I could tell that night on the phone…I heard it in his voice
Peggy: Yes. He has been some worked up. You know him. He will be glad to hear you’re home. Maybe we could all get together for dinner some time
Me: Annette wants me to come in and see you guys when I’m well enough
Peggy: Yes. Of course you have to do that
Me: Maybe once I’m off the walker.
Peggy: One day at a time. And by the way, the walker would not bother us.
Me: On The Balance Evaluation, if I had 2 more points, I’d be graduated to using a cane.. I just don’t think my walker could get into the door.
Peggy: Just keep plugging away and you will get there…right. Maybe not…Any chance this will happen again?
Me: Possibly…but the aggressive treatments and physiotherapy I’m undertaking is making the odds of it occurring astronomical…I been progressing at an unusually rapid pace.
Peggy: Well that is good to hear.
Me: First week in BGH, the Thursday I couldn’t stand steady for one to two minutes, then on Friday I can stand for 15 minutes…totally baffled my therapists.
Peggy: You must be entitled to a disability pension, right?
Me: If I couldn’t bounce back…but I wouldn’t bet against me.
Peggy: You want to get well, that’s what it is and you’re not letting this get you down.
Me: Nurses in Kingston were surprised at my positive attitude.
Peggy: Well you have the will to do it…and lots of friends behind you wanting the same thing. I thought you were mad at me because I kept trying to talk to you on the computer before we knew what was up and you did not say anything back. Then finally one night your sister talked to me. Then I knew it was her on MSN and not you. You were sick for awhile before we found out.
Me: I think this was a long time coming.
Peggy: How did they determine what you have?
Me: I felt rundown in june of 2008, so I arranged through Virginia for time off at the beginning of 2009.
Peggy: So it probably started then?
Me: Between that and I got fed up with some of the reasoning behind my switching shifts last year.
Peggy: How many trips to the hospital do you have to make
Me: one per week for therapy. Once per three weeks for IV treatment. Tell Ed this: he needs not worry, cause when I come back, not if, WHEN I come back, I’ll be better than ever. The card you guys all signed, meant most to me.
Peggy: I am glad to hear that
Me: Had to explain to my mom why Annette put “smooches”
Peggy: So if you should get down just read it again
Me: That’s what I do. It got to me at first. Reading the card got me very emotional.
Peggy: Well it was a very hard blow given to you. It was supposed to cheer you up.
Me: My mindset was “What was I doing putting all these people through all this bullshit!” I was always to busy worrying about other people’s needs that I neglected my own. Went in on April 21st…spent my birthday in Kingston. Annette gave me shit for not saying anything.lol
Peggy: Gary kept asking about you and I kept saying I have tried talking to him on the computer but you would not talk to me so we thought something might be wrong
Me: Up until mid April, everything looked to me like it was just my twenty-one year knee issues being the problem. When I first started rehab, Ed could beat me at arm wrestling.lol
Friday May 22nd 2009: *RETURN TO BGH EMERGENCY FOR *PICCLINE*
MSN Conversation
Annette: So how you making out getting around?
Me: I’m ok…I sometimes try without the walker around the house…push my limits but don’t push too hard. I’m gonna be gone after 3pm…have to go back to BGH to have a “pickline” put in. they want a more permanent port for the IV, as I’m difficult to find a vein on. Saline Locks are to be removed after 3 days.
Annette: Ok. So why do you need a permanent port for the IV?
Me: I have IVIG(blood product) once every three weeks…I’m due for it next Wednesday. I was in a foul mood when they called about the appointment…they may as well have made my discharge today.
Annette: Yeah. May as well have, then still be there and not have to try and get back there. What is the blood product for? The “Syndrome”?
Me: Yes. I believe so. I think that’s what got the legs going
Annette: Oh good stuff. You get ready to go and keep us posted
Saturday May 23rd 2009:
Annette: Are they expecting a “full recovery”?
Me: Not 100% but enough to live my life with my strength greatly restored
Annette: Perfect. Glad to hear that. So it sounds like all is looking up
Me: Yes it does
Monday June 1st 2009: *RELAPSE FROM INFECTION*
Me: Infection in my arm but I’m good
Jeri-Lynn: Eek! Hopefully you are on the road to recovery. Poor guy L
Me: It set me back a bit but I’m rebounding
Jeri-Lynn: That’s good
Tuesday June 2nd 2009:
Me: my one bud tried helping me out the other night at his place...he grabbed my arm from where I had a piccline removed. I said "LET GO OF ME BEFORE I HURT YOU!"
Jeri-Lynn: Eek!
Me: It’s the kind of pain that the most macho of men would be brought to tears
Jeri-Lynn: Poor guy. I really hope you feel better soon
Me: Me too
Friday June 5th 2009:
Me: I got the swelling down...on my arm I mean!!
Annette: Good. How’s everything else going?
Me: Pretty good...Robbie's happy I can go for drives now.lmao
Annette: At least get out for a drive now. Cool!
Me: I have an appt in KGH the next day though
Annette: well... My memory is not that good right now. Lots (tonnes) of stuff going on at home so keep me posted in case I forget to ask. ok?
Me: you bet
Annette: Thanks for touching base with me. Been thinking about ya!
Me: hugs...
Sunday June 7th 2009: About noon I had left Belleville for my appointment with my Neurologist at KGH…not knowing how an eventful day this was to become. I arrived just in time for my 1:30pm appointment. They ushered me in very promptly. Dr. Melanson was seated behind his desk awaiting my presence. It seemed somewhat odd in retrospect. We went the usual routine of testing reflexes, strength & resistance. As we go through this routine, the doctor has a puzzled look on his face each time. He then stands up and says “Umm…Mr. Bardy? There is a good possibility that you’re one of the ones who slips through the cracks! There is a good chance that you may be of the less than 5% that this was a one time only occurance.” After being told by the foremost experts in the field for over the last fourteen months that this IS a chronic condition…This WILL comeback, to find out that is likely not the case, no one can possibly understand the emotional high I was experiencing at this moment…
Monday June 15th 2009:
MSN Conversation
Annette: :^( (a crying emoticon)
Me: What’s Wrong?
Annette: Miss ya Kiddo
Me: Miss you too. Tell Rook, Kelly & Jackie I say hi and I miss them
Annette: Will do. Rook says “Awwww!” Girls are on break
Friday June 19th 2009:
Me: the IV went well...Im walking less with the walker...
Tuesday September 17th 2009:
MSN Conversation
Me: Got my doctor’s note today. I go for orientation tomorrow.
Carolyn: That’s good…the note and the orientation
Me: But I can’t start until after the 29th
Tuesday September 18th 2009:
MSN Conversation
Me: Just got back from work
Carolyn: So how was the orientation?
Me: Not bad. A lot of people doing double takes when they seen me…I noticed something about me while on the tour
Carolyn: What did you notice?
Me: While going over the steps for CM, I was lighter on my feet than I used to be
Tuesday September 22th 2009:
MSN Conversation
Jeri-Lynn: How are you?
Me: I’m good…Impatient but good.lmao
Jeri-Lynn: When do you go back to work?
Me: After the 29th according to my doctor’s note. Just on a part time basis
Jeri-Lynn: Bet you will be happy to be back
Me: Oh hell yeah! Lol…Longest six months of my life
Jeri-Lynn: Work is overrated…haha… I bet
Me: Tomorrow will be six months since my last shift. Yesterday was five months since I was in the hospital.
Jeri-Lynn: You feeling almost back to normal now?
Me: You should know by now, normal is a rarity for me.lol
Jeri-Lynn: haha…true, true
Me: Probably be December or January before I will go back to a full time schedule
Tuesday November 4th 2009:
MSN Conversation
Carolyn: So what have you been doing since you’re not working?
Me: Getting a bank loan, re-applying for EI, playing my game, dog sitting, taking Home Assessment pictures for insurance company
Carolyn: What’s wrong with the house, who’s dog are you sitting? Is your doctor having you on temporary?
Me: Every few years the want pictures for assessment to verify everything is in tip top shape. My sister’s dog while deer hunting. Temporary what?
Carolyn: Temporary work
Me: Yeah. I need to get my body re-conditioned to doing shift work. It won’t be until the end of the month that I will have freed up my schedule.
Carolyn: Why is your schedule busy for the month?
Me: The week of November 23rd, I am going to KGH on the 23rd, family doctor appointment on the 24th, dietician appointment on the 25th
Carolyn: Oh ok. I hope its all good news on those three days
Me: First one is a follow-up assessment & hopefully will remove piccline from arm. Second is check my blood pressure, weight & flu shots. Third is assessing I am following diet as I should
What To Write About...
· My many Physio/Recreational therapy sessions
· Discuss my many Dietician appointments
· My ups & downs Involving my infections from my Picclines. My relapse as well
· My 1st experience in public in my debilitated condition & while using a cane at the Marmora Redneck Derby
· My times on Neurology floor in KGH & Rehab floor in BGH.
· My progression to being able to walk again and becoming better physically than I ever was
· My part time return to work
· My battle with the government
· My fulltime return to work at full capacity
· A dedication page
· The transition from walker, to cane, to nothing at all.
· The nightmares
· The Post Traumatic Stress
· What happens when you push yourself too hard too soon
