About Me

A hilarious view of life with multiple autoimmune disease and chronic illness. Lupus, Dermatomyositis, Myositis, Alopecia, Raynaud's Syndrome, Sjogren's Disease, Depression & Anxiety. I have it all and have learned to not only accept what come my way but to see the humour in all that life has to offer. If you know someone struggling with chronic illness please refer them to this blog. My hope is to brighten the days of those who need it the most and give hope that there is still a beautiful life to live even if it may be a little bit broken!

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The Balys Family and the Plague All Hit Florida! Achooo!/Travelling With Autoimmune Illness

The Balys Family and the Plague All Hit Florida! Achooo!/Travelling With Autoimmune Illness

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This Christmas the entire Balys family headed to Florida.  Our gifts to each other this year were express passes to Universal Studios, which was first on our agenda.  We had a blast and the kids were so happy to be able to skip all of the lines, which was a huge blessing and a wonderful gift as the line ups for most of the good rides had up to a 3 hour waiting time.  We even got to skip the lines on the rides that did not have express lines because mom and dad had electric wheel chairs so the entire group got to go in the exits and get right on the rides.  Good thing as our progress in between the rides was slower than a group of turtles crossing the street.  Trying to get 14 people all to decide on the direction we need to go, actually beginning to move in that direction, and keeping everyone together is no small task, especially when everyone moves at very different speeds.  The children would run ahead and disappear while the moms frantically counted heads.   Others would disappear to refill drinks or go to the bathroom and poor grandma and grandpa had to try and figure out how to weave their electric wheel chairs through the massive crowds.

My parents in their electric wheel chairs were absolutely hilarious.  My dad would constantly start and stop, start and stop as the crowds stepped in his way causing us to start and stop while following him but by the end of the day he was weaving in and out of the crowds like a pro.  The problem was that being low to the ground he would occasionally accidentally follow the wrong family and just join in on their group to see if anything interesting was going on.  We would literally be looking for him only to find him sitting with another family, joined right in on their discussions.  Here is a picture of one of the nice families that he preferred hanging out with than our own family.  LOL

My mom on the other hand never uses an electric wheel chair and only needs it at the park because of her crappy lungs which prevents her from walking long distances so she did not have the driving skills that my dad did and frankly she didn’t seem to care either.  She didn’t even try to weave in and out of the crowds but would blast her way through and you had certainly better get out of her way or she was going to run you over as one lady unfortunately found out in Diagon Alley.  She stepped in my mom’s way and got taken right out much to the delight of all of the grand kids who had a blast watching grandma mow down people all day.  When we were getting in line for the train to Hogwarts she accidentally turned the scooter into high gear instead of hitting it off and plowed through the whole group of us sending everyone leaping for their lives while Ricky was yelling “why is someone not taping this????  We need the phones out videotaping!”  She was such a joy though as she laughed her way through every crash.  Benny made the mistake of getting in the elevator with her and her scooter on one of the rides and spent the ride up as a human pinball trying to dodge my mom’s scooter as she backed up and forward, ramming into the walls each time, trying to turn herself around to get back off of the elevator.  Benny said she didn’t even try not to hit the walls but just bounced off of them determined to get that wheelchair turned around before the doors opened while Benny spent the whole ride trying to jump out of the way.  He fell out of the elevator in a fit of laughter; “Still Alive!”  Those wheel chairs though were a god send as they were our ticket to the front of each of the lines and if we had to plow down a few people on our way to the front, so be it.  They also were great when dealing with grandkids who were beginning to whine about sore legs and feet as they could just hop onto grandma and grandpa’s laps for a ride.

I did pretty great at the park and even impressed myself with how long and far I managed to walk.  Before leaving for the trip I had a major sinus infection so I was still on heavy doses of antibiotics which were making my stomach very ill.  I had no choice but to take all of my meds as a massive cocktail before bed each night for, if I took all of the immunosuppressants, prednisone, and antibiotics in the morning I would not only have spent the entire day running from bathroom to bathroom but most likely would have passed out numerous times throughout the day so I took one for the team and suffered horribly each night.  I would take all of my meds together at night and then spend the whole night literally crapping myself and throwing up in the bathroom until morning but then I would be good to go the next morning after I swallowed at least 4 Imodium and drank bottle after bottle of water to try and rehydrate myself.  This worked though as long as I avoided food as much as possible during the day.  My stomach could only handle fruit so I nibbled on grapes at the park to keep my sugars up and stamina going.  This may be the first vacation where I actually come home a lot lighter than when I left.  This seemed to work out for me though as I was able to walk, non-stop, around the park from 7:30 am to 5:00 pm without too much problem.  Something I am not able to do at home when I take my meds during the day and deal with the side effects.  I wish that I could keep up this schedule of taking my medicine at night so I could be more productive during the day but I seriously get no sleep at all when I take them at night and there is no way that I could last too long without any sleep at all.  I had a great day and so much fun with my family that I didn’t really notice how tired I was getting until about 5:00 pm when I hit the wall.  Suddenly my knees were giving out with every step I took, I felt like someone was stabbing a sword through my lungs and stomach and guess what?…  I was as far from the exit and as deep into the theme park as I could get.  No worries, though.  I hobbled my way out the exit and then after a tiny crying melt down, Danny grabbed another wheel chair to wheel me from the exit to where the car was parked.  I was super proud of how well I did and we all had a blast at the park.

 

We all relaxed at the pool the next day and then planned to head out for day two at Universal the next day.  We were a smaller group on the second day as Cindy, my sister in law, needed a day to try to recuperate from the virus she was absolutely dying from and my mom and dad had planned to take that day off too.  In the morning we soon discovered that my brother and nephew had woken up with this horrible plague that later on took us all down one by one as the day progressed with me, all of the kids, and my dad all taken down by this horrible flu.  Fever, body aches, sore throats, shakes, stuffed nose and horrible congestion in our chests and it lasted for weeks too.  I am still coughing and dealing with the stuffy nose and fever.  As we all became sick, one by one, we still battled through that amusement park and hit every ride.  There is no stopping the Balys family when it comes to an amusement park.  Part way through the morning even my poor nephew and brother hobbled into the park not wanting to miss all of the fun and we ended up wheeling around the two boys in wheel chairs instead of the grandparents.  They were little troupers though and lasted through a thirteen hour day.  By the end of the day, I was pretty miserable having blown out my knee as walking for thirteen hours with a muscle disease was seriously pushing it.  I just hadn’t realized that I would actually pull all of the muscles around my knee doing so.  I was also sick as a dog by the end of the day with a fever and the shakes but man I still had a great day and we had so much fun!  I did spend the next day lying in bed like a zombie but it was worth it.

By the end of the day we got a phone call from my dad letting us know that my mom was not feeling well either but she was way worse than the rest of us and had developed pneumonia.  Ironically, she was actually one of the only people who did not catch the virus we all had, her pneumonia was completely unrelated and just really bad luck.  I felt terrible for her as she had to take a trip into the hospital and spent the rest of her entire vacation time, not at Disneyland, but at the Disney Hospital recovering.  She was pretty sick and we were very worried for her but she is feeling all better now and was such a good sport about being stuck in the hospital and that was some hospital.  It looked like a hotel with free valet parking as you arrived to visit and even had a spa on the first level.  I wish we had hospitals like that here.  I have never seen any place so clean and well cared for and the speed in which they did testing, got results and the sheer number of doctors taking care of their patients was impressive.  I realize that it is more important to have a health care system that everyone has access to in Canada than to have a posh hospital like this but man was it nice.  Thank goodness for the travel insurance that covered the majority of the hospital expenses for this posh hospital and extra travel costs or this trip would have been a complete disaster.  So the last half of the vacation was not nearly as much fun as the first half and was mostly spent with all of us sick and worried.  Not just sick because we were worried but literally dying from the plague that was raging through us all.  LOL Yet we still managed to get some swimming in and a quick trip to the beach.  Being sick is much easier to take when you are sitting on a beach or lounging by the pool.  We all made it home safe and sound and even though things did not go perfectly we still had a lot of fun and the kids thought it was the best vacation ever because we all got to be together at Universal and they got to play with their cousins.  Although their favorite part was for sure watching Grandma drive that electric scooter.  It would not be a family vacation without a little drama anyway!

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About Me

A hilarious view of life with multiple autoimmune disease and chronic illness. Lupus, Dermatomyositis, Myositis, Alopecia, Raynaud's Syndrome, Sjogren's Disease, Depression & Anxiety. I have it all and have learned to not only accept what come my way but to see the humour in all that life has to offer. If you know someone struggling with chronic illness please refer them to this blog. My hope is to brighten the days of those who need it the most and give hope that there is still a beautiful life to live even if it may be a little bit broken!

Stay Connected

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