- October 27, 2016
- Theresa Bertuzzi
Shoot! I felt like I was doing so well and I was so excited. I could walk up the stairs again and get in and out of the bathtub, then my doctors tried to taper down the Prednisone and my body decided “Nope, not going to happen!” Within days I could no longer get up the stairs on my own and my biceps have blown up so that I look like Popeye. Seriously, I will have to get a picture when they are completely pumped up because it is really kind of cool. I could enter a body building contest but can barely lift a book. So weird! The rash is back on my face but, before it was across my cheeks and nose looking like a healthy sunburn, now it is just under my eyes and along the side of my nose giving me a very unhealthy and unflattering look like I am walking around with the worst head cold ever. Ewwww! Brushing my teeth leaves me panting with exhaustion and so dizzy that I have to hang onto the sink to stop myself from toppling over. The worst part is I feel like I have a perpetual chest cold because I can no longer swallow properly. My muscles are sluggish and my timing is off so I am choking on everything and feel like I am drowning by bedtime. Some people would interrupt here to say well at least she won’t gain that weight she is worried about but no I can still manage to eat; I just chew a lot.
When I explained my choking to my older brother he supportively pointed out “Oh my god! Now what happens? We are going to have to start feeding you with a sling shot!” LOL! Some people may be shocked by the bluntness of my family but that statement was made with much love and was just the thing I needed to snap out of feeling sorry for myself with a good laugh. My whole life I could always count on my family for their blunt and often hilarious observations that can only make you laugh and help you to learn to laugh at yourself since I know that if I really needed someone to come by every day to feed me with a sling shot he would do it loyally and he would make sure that he shot good things like pieces of cake and cookies! I remember when I first lost my eyebrows to these horrible autoimmune diseases; I was devastated. I felt so terrible about it and when my brothers saw me they both confirmed “aghhh it’s not that bad, you just look really, really surprised all of the time!” It really was just what I needed to hear and when people would give me sideways glances and I thought they may be looking at my browless face, which does look really weird by the way, I would hear their words in my head and just look as startled as I could and then move on while laughing to myself. This same wonderful family surprised me for my Birthday that year with a very expensive set of eyebrow tattoos that there is no way I could have afforded on my own, at that time, so I would no longer have to walk around looking shocked and dismayed at everything I saw. When I was afraid to have the EMG electric shock tests I asked my brother, the ENT surgeon what it would feel like. He told me to get out a battery and stick my tongue to it. Then he added in that I really needed to Skype him while I did it so he could watch.” In other words, yes it will hurt! These are my people, my parents, my brothers, my sister in law and my nieces and nephews, they do not believe in holding your hand while you weep but will grab you right by the scruff of the neck, pick you up and drag you around. “I’ll piggy back your sorry ass around the amusement park but you better hold my drink and take off that wig because we are going to use your illness so we can cut to the front of the line while we are at it.” I hope everyone struggling with anything have people like this in their lives.
My children and husband are the ones on the front lines who I would say get the worst end of the deal. They are the witnesses of those moments before I get a hold of myself and get back on my feet. They have to watch me when I am sick to my stomach, help me crawl up those steps and see me weep when I am just too exhausted to keep it all inside anymore. My poor husband spent months lifting me in and out of the bathtub and I love my baths. I read a book in the bubble bath every single night. There were some nights when he would hint that maybe I could just shower so he wouldn’t have to haul me out just for one night. I would agree and awhile later he would find me up to my neck in bubbles with a sheepish look on my face. I suppose I was rolling the dice as he could have left me in there but he is loyal to the core and would just shake his head and haul me back out again and again. He is my hero and he gets the worst of it because I am careful to try to keep it away from the kids as much as I can since, even though I know I will be fine, I am always worried that it scares them to see me weaken and not be able to do the things that I always could do. I tell my children the truth all of the time and they are comforted by the fact that I don’t keep information from them because I think that the unknown would be far more frightening. I want them to understand that this sucks for all of us but in the end I will be fine again and that there really is nothing to fear. I am also careful to make sure that I laugh off even the most unlaughable moments so that they can see that even the worst moments have humour in them. The result is that they have very little fear when something goes wrong. The other day I tripped over my droopy foot and wiped out right in front of my daughter who was lying on the couch in my room. Falling is an unfortunate side effect of muscle disease. This may have scared or worried some kids but not mine. She didn’t even miss a beat yelling “TIMBER!” even before I hit the floor. Then she lay on the floor beside me to snap a selfie before calling my husband to come and help me back up again. How can you not laugh at yourself at that point? Sometimes I feel super guilty that they have been burdened by my illnesses over the past seven years but I also can see how it has turned my children into wonderful, caring little souls. They don’t care that I have to wear a wig, in fact I woke up from a nap to find my daughter with her little buddy standing over me while she explained that my hair really wasn’t real and if he just slid my wig back he could see for himself. Apparently he thought she was telling a whopper! You will also often find her parading around the house sporting one of my wigs. They only time my children are bothered by my hair loss is when I am ticked off at them and threaten to drive them to school without my wig on. This is a sure fire way to win any argument by the way because they know I will do it! This summer when we went to Wonderland I needed help lifting my legs in and out of the roller coasters. No problem, my boys just hauled their mom in and out of the rides. It never even occurred to them to be embarrassed by this, their only concern was that I made it on every single ride with them and I did. It almost killed me, but I did it and they cheered me on like I had run a marathon and we laughed and giggled our way on and off each ride. Last summer there was a little incident where I was stuck in a tree at the clip and climb park in Nova Scotia. I will post the video so you can all enjoy a good laugh as my helpful brother recorded the whole incident on his Go Pro. You will have to excuse the shaky recording as he was laughing hysterically while filming. This may have humiliated some children but not mine. They thought I was awesome for just being up there in the trees with them and they hooted, laughed and cheered me on as I tried to get myself the hell out of that tree. For them, being unable to do something is not viewed as something to be ashamed of or hidden but to be embraced as a challenge and I see how they are also able to laugh and accept their own failures and mistakes and have absolutely no fear in trying new challenges.
I also have an amazing posse of friends who are a huge crutch for me. They even took me to the haunted house at Billings Estates, which was completely awesome by the way!!! My three best friends planned the night because I said I needed a distraction. Now you need to understand that the three of them absolutely hate this stuff and under normal circumstances would not have even considered going there with me, let alone suggesting the event and planning it and nothing more could have touched my heart than having them literally piss their pants in fear in a dark forest while we were chased by a creepy set of twins through giant towering crow people. Did I mention it was awesome? If you have not been to the haunted house at Billings Estate go this weekend! Only $10.00 a person and worth every penny! So much fun! It is truly amazing but get ready to freak out because it is so realistic and well done. Now my friends are very similar to my family in that their sympathy and kindness will only go so far as they were willing to put their fears aside to come with me but made sure that I knew that my big but was going in the front so they could all hide behind me! I joked that I would use them as human shields but they decided the sicky better be the shield on this adventure. At one point they were clutching my arm so hard I thought it would surely break and someone, I won’t name who, claimed that she really did pee herself just a little. The joke was on them though as they followed me down into the creepy basement filled with “The Ring” style TV sets because when we were chased out of there by a screaming maniac they realized that they had put the person with the muscle disease, who could not climb the stairs on their own, in front of them blocking their only way out. They pushed my rear so hard up those stairs that I actually took flight at one point and shot out into the garden while they all piled out behind me panting. These are good friends. They could have ran me over but instead I found myself shoved, all be it not very gently, up and out to safety, then they ran over top of me. These girls are my peeps and I love each of them in their own way as they are so different from each other.
There is Brigida who will laugh her way through any predicament, you can literally hear her where ever you are and are comforted to know she is there because she will take charge of every situation, meaning that the rest of us can follow along obliviously freely enjoying ourselves because she is always worrying about all of the details. When we go on trips she has the itinerary for all of us drafted up and placed in folders. “Did you bring your boarding passes?” “Nah, Brig is here I just showed up with my clean underwear; you?” “She told me she brought new underwear for us all so I didn’t even bring that!” That is really no exaggeration she literally bought us extra underwear in case we forgot. Yet even with her excessive planning she is still the most likely one of us to get into trouble and if anyone was going to race through the dark, trip over her own feet, causing her bag to fly up and smack her in the head, sending her sprawling on the floor completely concussed it would be her. Not that that happened in the haunted house but it did happen one night in the dark spooky halls of our Tiny Hoppers daycare. Diane has the heart of gold and will take in any stray person or animal. She is literally Doctor Doo Little with a house filled with pets that she adores and normally a straggler or two of the human kind camping out for the night because they needed a place to stay. I have never seen anyone so quick to step up and help someone in need and she always puts everyone before herself but….she also packs a mean punch and I was truly worried for the students working the haunted house as the likelihood of her socking one of them in the nose out of fear was very, very high! One time she shoved a famous hockey player across a bar because he kept crowding her on the dance floor. Someone asked her if she knew who she just shoved and she claimed she didn’t give a crap he needed to stay out of her space. Diane judges people with her heart and is not influenced by status there is a quote that says, “Materialistic things don’t impress me, your soul does,” that would be Diane’s motto. Then there is our sweet Melanie. Of all of us she would probably be the one most likely to keep her head in any emergency situation and her sweetness and politeness had her moving through the haunted house calmly telling all of the monsters “no, thank you!” “no, thank you” even though she really wanted to race out of there like she was on fire. When a really scary clown was about to attack us she had had enough and firmly told him “no, thank you!” He stood there a little shocked but did not attack so she politely thanked him and he responded out of the dark “you’re welcome!” LOL. Melanie is always ready for an adventure and you can always count on her to be happy and have fun she keeps the group going and makes sure that we don’t miss out on any of the fun things in life but that we always need to do so politely! “No thank you!”
In addition to my main posse I have had so many people reach out to me since I have started this blog. Buddies in the neighbourhood have written me to let me know I need to watch for their little gifts in the mail, my soccer friends have stepped up with drives for my daughter, my Aunt and Uncle just dropped off a bunch of delicious meals and so many people have reached out to me to say how much they love hearing about my progress and are enjoying the laughs. My two aunts, who both battle their own struggles with MS came for a visit bringing me books, love and tons of helpful advice and tips. Aunties, I have read the book about the Paleo diet and autoimmune disease, although I did eat a candy apple while I read it. I can see them both shaking their heads right now. LOL I am taking it into serious consideration though once my meds are lowered a bit but cutting out carbs right now would not be healthy for anyone in my near vicinity at the moment. I love you all. I have also been touched by the amount of people who have private messaged me to share their own struggles and I am so glad that my telling my story has opened the doors for them to share their stories with me. I never realized how many friends I have who are also facing such struggles, many far worse than my own, and their experiences help me to give myself a shake and stop feeling sorry for myself because I know that this is just a setback for me and in the end I will look back at this time and mostly remember the love and friendship that I received along with the ability to laugh a little harder at this beautifully, broken life!