My name is Charis Parago. I am 31 years old and married to Shawn, who has blessed me and encouraged me through it all. We have 3 beautiful boys who are 12, 10, and soon to be 8 years old. This blog spot is about my journey with what is expected to be Multiple Sclerosis. I say this because I have not been "officially" diagnosed as I am waiting on my last MRI tests.
I'm not entirely sure what my intent is by starting this blog, but I hope it helps my friends and family, by giving them a glimpse of what it is like. This will hopefully allow us to go through this journey together, because quite frankly I have no idea what to expect either.
So I guess to begin, it started in January of this year. I woke up and my legs and feet were numb. Not all of it, but down the outside and it was very symetrical. After a couple of days I went to emergency (it was going to be a few days until I could get in with my doctor) to ask what was going on. The doctor told me to go home and just wait, and told me it was probably a circulation issue. After a few more days I saw my doctor, and he asked me if anyone in my family had MS. I was like "no" and thought no more of it after he asked me a bunch more questions about different symptoms, none of which I had. He wanted to do an MRI but I suggested that it might be something with my back because I have some back problems. He agreed to order a CT scan because I posed no other symptoms of MS.
This numbness continued for a couple of weeks and then went away. However a few weeks later it came back. Then one day while I was sitting at the hockey rink I looked down and felt a "buzzing" going down my spine. This eventually was what the doctors call an "electric shock". It continued and went down my legs. The doctor called me at the end of March and when I went to see him he told me that the CT scan showed nothing. I then told him about this "electric shock" feeling and he said that I needed to have an MRI to rule out MS. He was optimistic in the fact that I didn't pose some of the other major symptoms such as vision problems. So I agreed thinking nothing more of it and had my MRI appointment in mid May. During this time the "electric shock" started to move down my arms as well and the numbness continued to come and go, lasting about 2-3 weeks each time it came on. I continued to work and told only a few people just that my legs were feeling a bit numb. Not wanting to worry anyone and not thinking that it was anything serious, I continued as normal and thought eventually we will figure this out. Maybe it was something in my upper back? Maybe it was a circulation issue?
Well this is where the story begins...On May 29th the doctor saw me for the results of my MRI and told me that I have white matter or spots on my brain and that it was consistent with MS. He wanted me to see a neurologist as soon as possible. What?!! Had I heard him right? But I thought I didn't pose any other symptoms and that was supposed to be a good thing right? It didn't even hit me until I got into my vehicle to make the short drive home. I picked up Shawn from work and then started crying. Was I going to lose my ability to walk? What did that mean for us? For my family? I know now that I was jumping the gun, but I really didn't know that much about the disease. I went home and googled EVERYTHING! Did I really have this? Could I have this? Now you have to know that when you are talking to someone in person you get a very good perception of what they are thinking, so even though I had a lot more to do before I knew if this was it, I knew it was serious. There was stuff on my brain!
Of course the neurologist appointment came a lot later and I didn't have an appointment until the end of September! Wow that seems like a long wait! On the good side, the numbness went away the beginning of June and it hadn't come back through all of summer! Oh but wait...now I had gallbladder issues and finally ended up in the hospital for a week and had an emergency surgery! Well this was in the middle of September and I have my neurologist appointment on the 24th! This gallbladder surgery is what I believe triggered my latest episode. The anesthetist came in and told me that if I did indeed have MS, the anesthetic could bring on another episode. Ok so what? Maybe I don't have it? It haven't had any numbness or "buzzing" for over 3 months now. Well I woke up and my right hand and the right side of my upper body was numb. Great!
I was recovering from surgery and went to my appointment 10 days later to see the neurologist. He asked me a bunch of questions and checked a bunch of reflexes, etc. In the end he told me that lots of what I have could be caused by other things, if they were of and by themselves. However with the combination of everything it was mostly likely MS. "I'm guessing this isn't coming as a shock to you?" he says. "Well no, but it's just different when you actually hear it," I tell him. Now what? Well now he explains the different kinds, what he believes MS to be, because no one knows EXACTLY what it is and there is no test that can be given, so it's diagnosed by saying that it CAN'T be anything else. So he ordered an MRI of my brain, and neck with a dye in it and a ton of blood work. Basically all of this as a formality. Like I said before, when you are talking with someone, you know the direction they are thinking. This was another one of those times...He was telling me that this is what it is, but we need to do the tests, because "the only way it can be diagnosed is by saying it is nothing else."
So now since then, I have had my tests and am waiting on the results. My doctor has given me medical leave and wants me diagnosed and on treatments before I return. The numbness has spread to my chest, stomach, legs, feet, left hand and my back. Different areas have different levels of numbness. My right hand and chest/stomach area is the worst right now. I can move my hand, but the strength is gone and when I do something it cramps up. Everything that you do that requires fine motor skills is a challenge. Tying laces, putting in earrings, taking a cap off a bottle, holding a pen, putting on make-up etc. Even typing this difficult and I make tons of mistakes. I am at least a decent typer so I know apporoximately where the keys are supposed to be. It's not only the numbness though, but my balance is off this time. If I stand in one spot I feel tipsy. I stumble or almost fall over when I turn around or walk sometimes. I lose my train of thinking quickly sometimes. It's hard to know if that is just normal though. LOL But Shawn tells me that it's worse. I also tire easily when I'm walking. I think that's because the feeling isn't there and it requires a lot more effort to do anything.
There is so much more to write, like how this affects my family. My boys all know and of course it is harder the older they are because their level of understanding is greater. How does this affect Shawn? My mom, dad and my brothers? Do I ask God why? Why me? Is this numbness going to go away? It's been over 4 weeks now and it just keeps getting worse. Am I angry, sad, confused? How am I handling it all? I will answer it all later, but I wanted to start with my story and how I got here.
I will tell you I have struggled a lot more this last month, since the surgery, because it's all coming to a head. People now know, it's worse than last time, it's lasted longer, and I feel like I look normal but there is struggles with everyday things. We are in the full swing of hockey and I can't stand still to have a conversation with parents because I will fall over. I can't tie my youngests skates or goalie pads because my fingers don't work and aren't srong enough. Will I be able to stand up during their games and cheer them on? Can I fulfill my canteen duties? That's a lot of standing around and grabbing things! I know that people are there to help out but I feel like I look normal therefore I should be able to do the normal things. It's an inner struggle.
I need to give my hands a break and then try to tackle some sort of house work. So far I have only attempted laundry and dishes. Today I think it will be a bathroom, but even that is a daunting task to think about. Especially when you are not left handed.
Before I go, "thank you" to Shawn, who has been there through everything. I know there is a ton of stress to deal with between, hockey, work, my surgery and this!! Also to my immediate family, who I know are constantly in prayer for me. And of course my friends (especially Andrea!!) who have allowed me to share with them, cry with them and pop in on them at any given moment.
"I can do all things through Christ who strengthens me." Philippians 4:13
