Month: June 2020

Thanks Pizza Delight Shediac for a delicious supper for my birthday. I have to thank my care giver today at home. I didn’t have a birthday supper last night as I wanted to as I spent the night at the hospital. She told me today she would pick me up something if I wanted while she picked up my prescription. I haven’t had Pizza Delight in a very long time and that’s my birthday supper tonight. It was good!!! Left overs for a few days. 🥳😋

Thanks Bernice for picking that up for me. Appreciate it.. Glad I’m back home again and it wasn’t anything to serious last night. Now no more hospitals or ambulance rides anytime soon. 🙂

I’m glad to say that I don’t have a DVT (deep vein thrombosis) no blood clot.The ultrasound came back negative. They suspect cellulitis, as there was elevated white blood cell count as my body was fighting something. I can’t help but think when I hear my body fighting back I think of GBS on how your body gets confused and attacks itself, the nerves. I hope this is nothing but we’ll see. They gave antibiotics through ivy this morning to get it in my system quickly. I’ll be on this antibiotic for next 10 days.

I’m happy to say that I am back home again. Ambulance came picked me up to take me home. It was nice as I was told by a nurse the ambulance attendant said he remembers me. He walked in and it was the first guy that took me to Stan Cassidy Rehabilitation Center in Fredericton at the end of September 2019. He also remembers how bad I was and to see how far I’ve come for him was shocking. It was nice to see he said as he often wondered how I was doing.

His father had GBS about over a year ago and I remember our talk the first time. His father was fortunate as it only paralyzed from knees down and had a good recovery and doing well at his age. Minor loss of feeling in one foot. The ambulance attendant said I’ve come a long way and glad I’m doing better and progressing despite my severe case of GBS I had. Everyone is so different on how Guillain Barre Syndrome affects them, how bad and how fast recovery is.

I’m glad to be back home and also glad nothing serious. I will do research on cellulitis as I’ve heard other people who had GBS talk about it. I just know nothing about it really. I’m glad no blood clot, didn’t want to go to hospital really. Better safe then sorry the nurse from Télé Care said on phone last night. I’m the type of guy you basically got to drag me in the hospital as I don’t go for nothing. I once played basketball for a month or so in a league a few years ago and ended up having a hair line fracture of my tibia half way across. The pain got so bad and ended up going in after month or so playing on it. Surgeon said 6-12 months off playing to recover.

Not the way I expected my birthday to finish but I’m ok. Just another bump in the road to my long journey in recovering from GBS.

Thanks everyone for all the get well messages, I appreciate it.

** Deep vein thrombosis (DVT) is a serious condition that occurs when a blood clot forms in a vein located deep inside your body. A blood clot is a clump of blood that’s turned to a solid state. Deep vein blood clots typically form in your thigh or lower leg, but they can also develop in other areas of your body.**

Well they did blood work and my white blood cell count was elevated. This could be a sign of an infection. My body is fighting something. I’m on ivy with antibiotics now. Doctor was concerned with possibility of blood clot given by what I’ve been through and recently off blood thinner injection. He ordered an ultrasound to rule out DVT (blood clot).

I just got back from my ultrasound and waiting on results. Hope it’s nothing.

Back at the Moncton Hospital again….Way to soon, I just got back home. Hopefully it’s nothing but having issue with my right leg, swelling, warm, nerve pain, severe chills and leg tight. Blood work done, more tests in morning just to rule out DVT. They took me off blood thinner injection when I got back to Moncton Hospital. I didn’t think I would have come back here so soon. Nurse from telecare wanted me to come in and advised me too. She sent an ambulance. Hoping it’s nothing but we’ll see, gonna be a long night. On my birthday too. Not the way I wanted to spend my birthday. I knew I had to come for possible blood clot, just didn’t expect to return so quickly. Hopefully it’s nothing.

My first night home, I have to say it was great. It’s nice to be home, different but nice to just be home. I met my care giver from Kindred Home Care yesterday as well as the manager and they are great!! Very nice and helpful. They had a chance to see my blog, videos and see how far I’ve come and gave them a good idea on what help I still need. I relaxed last night, did a few things but it was nice. Slept in my king size bed. 🙂

Now this morning, waking up to a new day, life came back quick, I received a call from social development. I was told before medical transportation to rehab and doctors appointments would be covered. I woke up to this call this morning informing I was denied, I don’t qualify. People pay into this, why qualify, if disabled, they should be entitled since in fact we all pay into the system. Our money is in there. I sat in bed and after the call, thinking, but nothing surprises me after everything I’ve gone through. I’m going to keep moving forward no matter what obstacles or extra challenges people throw at me. GBS didn’t take me down, the Government keeps throwing punches at me so to speak, but I’m still here. They are kicking me when I’m down but I’ll get through this. Just unfortunate that I’m going through this, how many others out there are going through the same thing. How many other stories of denials for a system we pay into and we all hope that in our time of need they’ll be there. That’s not the case.

I’m fortunate to be able to handle these things and take care of arrangements on my own but many people can’t. Many people don’t have their mind or abilities based on diagnosis to do things. These things I’m going through would be enough to break someone in their already low part of their lives and lack of support given by our Government. I just hope that if there are people going through difficult times they reach out to organizations that could perhaps help. If anyone is in Canada going through things, need someone to talk to, advice etc.. message me. I don’t know everything but some organizations I know of that may help. Just stay strong, no matter what your trying to beat as your diagnosis you’re still here fighting. Sometimes it takes time to work things out but my whole life no matter what challenges I faced, things have a way of working out. It might not be the easiest path but what I learned is that they do somehow all come together. Life can be tough but people can be tougher!!

Just another thing I’m going though. Just to come home from the Moncton Hospital was $82 accessible taxi ride one way. Now if I was to go to outpatient services twice a week that would be $328 a week, that’s not counting any doctors appointments. Medical transportation is a service our government has but I don’t qualify I guess.

It is what it is, I laugh now as nothing surprises me at all anymore. It isn’t funny at all but just not surprised for everything I’ve gone through.

I’m still here and I will someday beat GBS but my rehab now will continue at home and with my determination, and will along with my amazing care giver, I’ll beat this. When I do as someone told me, it will mean that much more as despite all the challenges and obstacles along the way I did it….. 💪

Anyone else going through GBS you stay strong!!!! We’ll beat this and if you need to talk, message me anytime. The first part of GBS is beating your mind, the rest comes in time with your recovery. You got this!!! 🙂

After 330 days recovering from Guillain Barre Syndrome, I’m finally home. It’s been a long journey and road to recovery from GBS and it isn’t over yet but just glad to be home. It was a day I was forever waiting for and tonight I get to sleep in my own bed. I’m finally home!!!!

Leaving the Moncton Hospital this morning to go home!!!! 330 days later since Guillain Barre Syndrome happened on August 1st, 2019 and I’m finally heading home. The day I was waiting for, for so long is finally happening!!! A great day!!! 🙂

After 330 days, 5 hospitals/rehab, 20 IVIG treatments, 5 rounds of Plasmapheresis, and lots of hard work and determination, today is the day!!! The day I’ve been looking forward for so long has finally come!!! An early birthday gift to me. 🥳

My ride home is booked for 10am by All Access Taxi, the same guy that took me to my sons basketball practice when I was home at Christmas for 2 weeks. Very nice guy! I’m coming home…. 🙂

Well today my Savaria Stairlift is being installed at home. Finally some results and that much closer to going home. It’s frustrating that NB Housing Program denied me on everything but happy that Muscular Dystrophy Canada came through to help. They are much better then our government that’s for sure. I’m very fortunate for their help.

While the Savaria Stairlift is being installed at home my brother and father are doing a few things to help. Ramp is getting done today, a pedestal sink is being put in so I can access the bathtub and the bathroom door is being widened. Things are starting to come together and hopefully I’ll be able to go home soon. It’s 329 days now for me that I’m in the hospital/rehab and I can’t wait to go home. Hopefully lots get done today.

Finally some good news!!! I would like to send out a very special thanks to Muscular Dystrophy Canada for helping towards the purchase of a stair lift. An application was done a long time ago up in Fredericton at Stan Cassidy but with this Covid situation has delayed everything in the world. I just got the email just a little while ago and Fraser called me too and let me know the news. He was already in touch with Harding and the stair lift is being installed right now as my brother and father are down there doing a few things for me…I needed this. One step closer to going home. 🙂

Muscular Dystrophy Approves Stair Lift Application

Our own government wouldn’t help me for which I paid into but I’m very thankful for the help from Muscular Dystrophy Canada. I know talking to him, funds were low as they haven’t been able to do any fundraising with this Covid pandemic really and they had to eliminate some of their assistance programs but the stair glide was one they could help with. I thank them so much!!!

Muscular Dystrophy Needs Your Donations

If anyone would like to donate to Muscular Dystrophy, please consider it. Your donations have a real impact on people’s lives as they go through disabilities. I know they are doing a virtual walkathon here soon. I’ll be posting it and will be supporting them for whatever I can do. I would like to help them help so they can help other people. Lots of people need help.

Thank you Muscular Dystrophy Canada, words cannot express the gratitude I have for the help you provided. To Fraser, thanks for escalating this to get this approved so quickly after talking to you just yesterday. Thank you!!!

I may be home for my birthday after all on Saturday. We’ll see. 🙂

I just received a phone call from Muscular Dystrophy about an application for a stair lift for my home that was put in months ago. It’s not approved yet but it looks good and the guy doesn’t see any reason it won’t be. They will cover $2,000 if approved for stair lift for home. Should know by next week. A little bit of hope… the lift costs $3,200 but if approved they’ll cover $2,000. Hoping for the best.

I still won’t have barrier free shower which is $6,900 which I really do need. No programs for that but he said he’ll work with me to see if any other organization can help.

To sum it up, Muscular Dystrophy may be helping, he did say funds low, donations low but I meet requirements but our own government in which we pay into, won’t help. Hoping to know more tomorrow as he was going to speak to supervisor to see if can speed up approval. We’ll see, hoping anyways….