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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CT Results & IVIG Infusions Started

CT Results & IVIG Infusions Started

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Good News!!!  CT scan is back and they found no cancer in my chest or abdominal region.  Whoot Whoot!!!  All clear for the next 6 months.  I will have to continue with the full body CT Scans, Breast MRI’s every 3 to 6 months and the upper endoscopes and colonoscopies will be done in March and every twelve months after that for the next five years.  Okay, that part just sucks but it has to be done because of the enzyme I tested positive for.


I started my IVIG Infusions last week and I am still dealing with some of the side effects.  It was a little rough but will hopefully mean that I will be able to taper off of the Prednisone, which will completely change my world as the side effects from this drug are just horrible.   Much like everyone else, I had never even heard of an IVIG infusion before getting sick.  It really is truly amazing what they can now do to save someone’s life.  An IVIG infusion is similar to getting a blood transfusion except you only get a small piece of the blood called the immunoglobulin or antibodies.  Essentially what happens is that all of the medications that I am taking are designed to lower my own immune system and then they infuse me with the healthy immune system of blood donors.  The scientists pool the immunoglobulin from over a thousand people’s blood donations to make one dose of infusion.  This means that in one year I will be using up the antibodies from over 12,000 blood donors.  That number takes my breath away and I never imagined that so many donors were needed to treat just one patient.  They do extract other parts of the blood to use in different patients, so the blood is not solely used on me but it is still staggering to imagine that 12,000 Canadians will have to donate blood to be able to make my treatments for just this year.  So I am asking all of my healthy friends to please consider donating blood.  Whenever I pictured blood donations in the past I have always thought of blood transfusions where patients will need a few bags of blood but I had no idea that it can take thousands of donors to create lifesaving treatments.  The day I was being infused, so were two other patients so on that particular day, the three of us used up three thousand blood donors.  What?????   Amazing….  as long as people keep donating.  If there are not enough donations though then the infusions cannot be made which would spell disaster for so many patients.  So  please donate! 


I had heard many horror stories about the side effects that you can get from the IVIG infusions and I heard some stories of people that had very few problems at all.  I guess I fell somewhere in the middle.  When I arrived that nurse hooked me up to the IV and then placed up the eight bottles of infusion that they would drip into me that day over the next nine hours and the following day I would get eight more bottles infused again.  They have to do the treatment over two full days because the slower they infuse the antibodies into your IV the less chance you have of getting really sick.  I am not exactly sure of why you get sick from these treatments but I assume it is mainly a reaction to having so many foreign antibodies introduced into your blood system.  The nurse explained that each time you are treated the side effects can be completely different because each time you are introduced to a whole new pool of people and you don’t know if you may react to their immunoglobulin.  They take your blood pressure every half an hour, take your temperature and check you over to make sure you are not having a reaction throughout the whole process which is a good thing because it really is the only thing exciting that happens in that room all day!  LOL  Oh and having to pee is suddenly very exciting as you get to get up out of the chair, unplug your IV from the wall and make your way to the bathroom.  It is like an exciting field trip as you got to get out of the chair.  The crowd that day was not the same crowd that I had at my CT Scan where we laughed and had fun, these people were not at all happy to be there hooked up to the IV’s.  I tried making casual conversation with the people around me and I got the looks like “oh my god!  I have a talker sitting beside me!” so I decided to keep mainly to myself, even though it goes completely against my nature and everything in me wanted to scream “But I am the entertainment and I am here all day, live, for the next two days you lucky people!”  Instead I pulled out the homemade cinnamon bun I had packed for a snack and ate it really slowly, letting the strong, yummy scent of it waft across the room and torture them all.  I know they could smell it too because everyone kept eyeing me while I slowly ate it and made yummy noises.  This is pretty much how I deal with grumpy or negative people in my life, I have always made it a game to figure out a way to torture them in the friendliest way possible.  It drives my husband nuts as he thinks everyone will get mad at me but really it just confuses the other person because I am not doing anything wrong or that will justify them retaliating against me I am just annoying them back.  For example if someone rides up behind me when I am driving and takes up my space I will only drive slower and I will turn on my radio and sing and dance to make it extra annoying for the person behind me.  If someone gives me a face or a rude hand signal while I am out on the road I will smile, wave and look really excited to see them so it leaves them thinking “do I know that person, oh my god was that my second grade teacher, did I just flip off Mrs. Johnson???”  If someone loses patience with me because I am moving too slowly for them, which has been somewhat of a problem these past few months, their huffing and signaling for me to get out of their way will only cause me to suddenly want to stop where I am and tighten my shoelaces, even if I am wearing zip up boots.  I find that if you turn your frustrations into a game it takes your mind off of just how pissed off you are.  Why do you think I wore mittens when I was on duty as a teacher?  I could keep a smile on my face no matter how annoyed I got with anyone because I was flipping everyone the bird without anyone knowing!  It is easy to tell that same offender not to do something over and over and keep your patience when you are secretly saluting them every time they do it.  I am telling you a good pair of mittens can be your biggest stress reliever and are way better than any old pair of fashionable gloves.  So if you want to provide a great Christmas gift for that over stressed person in your life, print off a copy of this blog and wrap it up with a beautiful pair of new mittens, they will thank you for it I promise.  On a side note, if you are trapped in a stressful situation and are not wearing any mittens, because it would just be really weird to be walking inside with mittens on all of the time and people may start to suspect what you are doing, waving the middle finger in your pocket is just as effective as long as you don’t get too enthusiastic and let it pop out.  On this day I had worn my stretchy sweat clothes so I had no pocket to signal at any of the really grumpy people so I stuck with torturing them with my cinnamon bun.  You may be shocked and think “These are sick people, you should not be torturing them!”  but come on!  I am sick too, so I’m allowed and it was just cinnamon bun torture.  If they had even cracked a hint of a smile I would have shared with them. 


I spent the majority of my day blogging, texting friends and chatting with everyone on social media as everyone was so sweet and were messaging me like crazy to try to keep me entertained.  I was able to do this because I was doing so great and flew through the first 2/3rds of the day feeling just fine with no side effects.  I texted my brother to let him know it was going so well and it was like I challenged the universe to prove me wrong.  I had just hit the sent button on the text when I felt the first itch; just a little itchy spot on my abdomen.  I gave it a scratch and within seconds it was no longer an itchy spot.  I lifted my shirt in time to watch it change to a beat read colour and hives start to form so fast that it was like magic.  The nurse looked over and came running to unhook my meds and hook me up to an IV flush.  They then had Benadryl in me super-fast and kept them coming.  Apparently I was allergic to someone in the batch.  Suddenly all of those patients that didn’t want be entertained by me earlier were very interested in what was going on and everyone got to enjoy the show of watching my hives appear and disappear, appear and disappear while I wiggled, squirmed and tried to rub them without actually scratching my skin off.  After they got the reaction under control, they continued with the infusion while giving me Benadryl and essentially leaving me so stoned that I caught myself drooling more than once.  Thank goodness I only had a few hours left and I was so happy to get home that night.  When I got home it was Benny’s Birthday so my family popped in to wish him a Happy Birthday.  I was feeling pretty good other than being a little bit loopy from the Benadryl when suddenly me stomach turned.  My mom took one look at me and said I looked green.  I imagine I did look pretty green as I then spent the rest of the night sick to my stomach.  I did manage to sleep a little though and felt better by the next morning ready for round two.


As I started the next day, I now understood why the other patients were grumpy and realized that my cheery demeanor the previous day had probably annoyed them all so much that they were all flipping me the bird in their pockets.  I should have brought cinnamon buns for everyone.  The nurses started the day by loading me up with Benadryl and Tylenol before they even put the IV in.  I was drooling and dizzy before they even got the drip started.  The next day I was missing in action on social media as I curled myself up into fetal position in my chair and slept through the entire day.  The nurses commented that they had never seen anyone look so comfortable in the chair.  I grabbed tow pillows and curled around them and the sweet nurses wrapped me in warm blankets all day while I slept through their taking my blood pressure temperature and everything.  I would just open one eye and my mouth so they could put the thermometer in and then I would fall asleep before they took it out.  The time did pass much faster when I was stoned out of mind and sleeping but I also was unable to let them know that my head was starting to hurt so they could slow down the drip.  That evening I was out at the Christmas dinner for my staff when, at the end of the meal, the side effects hit me.  My neck started throbbing, my head started hurting and then my body hurt so bad from head to toe that it felt like people were hitting me with hammers.  Holy hell, it was like having the worst flu.  I excused myself and made it home in time to stumble into the house, where I swallowed four extra strength Tylenols and fell into bed.  The rest of the weekend did not go much better and I spent two days lying around in pain with the worst headache and body aches and my IV site was swollen and really sore with allergic reaction.  It really did suck but if a few days of being sick means that I can get off of this Prednisone then I will gladly do it.  From this you can guess at how bad the side effects of Prednisone really are!  Five days later and I am feeling a lot better with only a lingering headache that just won’t go away.  I am ready to give it another try in a few more weeks and I am hoping that this next batch of donors will agree with me a little more.  For now I am thankful to everyone who invented a way to make me better, the thousands of people who took the time to donate so I could get better, and the government who covered the full cost of the hugely expensive treatments that will hopefully send me on the path to remission.  I’ve got this!


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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