Reality

Reality is tough.  So many people have so many opinions and ideas.  They come with huge hearts, wanting to help and give insight as best as they know how.  Figuring out what my reality is....well it's a process. 

I have learned over these past few weeks that you can't run from everyone and you can't close your ears.  I can however look deep and search what is best for me.  There are so many ideas and possablilities of things that "might" work or help but in the end I need to come to those conclusions on my own.  Yesterday was a day of reality.

What is my reality?  What is the reality of MS?  There is no cure.  No way to make it go away.  I can try different methods such as vitamins, massage, physio, chiroprator, etc. to help with circulation and symptoms but that's all it is....trying.  There is no guarantee.  Everyone is different.  It may help relieve symptoms or it might not. Am I willing to try?  Sure I am.  Those are things worth trying.  Trying some John Doe's concoction for only $99.99 is not!  Or flying to Timbuck Two for some miracle surgery!  There are drugs out there that help people stay in a relapse mode.  But that is different all together.

I saw the neurologist yesterday and I will have to start going to the MS Center in Winnipeg to talk about these different drugs.  I am classified in the Relapse Remitting category, which is about 80% of people diagnosed with MS. Yesterday, I found that my reality is that I have to wait for my symptoms to go away.  There is no known drug that can fix me while in a relapse state.  So here is where I learn patience.  He told me there is nothing I can take to make the numbness go away, or bring strength back into my hands, or keep me from being dizzy.  I just have to wait.  So I will try a few of the ideas, one of them being to continue taking the Vitamin D and Alpha Lipoic Acid, as well as try some physio to help keep my muscles from tightening.  I also was blessed with someone offering to give me a couple of massages to try and help with some circulation.

Most people when they relapse have one or two new things happen, mine however is quite a few due to the number of new spots.  So right now I need to be patient and wait.....that is my reality.

Isaiah 40:31

But those who wait on the Lord

Shall renew their strength;

They shall mount up with wings like eagles,

They shall run and not be weary,

They shall walk and not faint.

Questions

It's been a couple of days since I last blogged, but it's been pretty busy around here this weekend and a lot has happened.  For one it is a lot harder to type because my hands are even worse...if that's even possible.  I can't feel the spaces on the keys and the range of motion is less.  So I'll keep this one short.

I have been taking Solumedrol intravenously for the past 4 days. Tomorrow is my last day.  It isn't helping so my doctor is going to call the neurologist tomorrow to let him know.  Basically if there was any inflamation on the nerves then this would help.  I was supposed to take it for 3-5 days.  Since it isn't working I will have to try more severe meds.  The doctor did tell me that this probably means I am at a different level of MS which is not a good thing, however I still don't know what it all means.  There are still lots of questions and new symptoms such as being very tired now and having issues with my taste buds.  One day it was lack of taste, now water tastes bitter, and coffee tastes like water.  What can I say?  Just praying that we find something that helps....soon.

Acceptance

The diagonis is official. I have multiple sclerosis.....I called the doctor this morning to find out if they had my results and the nurses transferred me to him because he wasn't with a patient.  I was also looking to see if he could give me something for my symptoms since they aren't subsiding, but slowly getting worse.  The doctor told me all of my bloodwork came back normal or negative and that the MRI showed new lesions on my brain.  He then told me that this "confirms our diagnosis of MS".  I was told to start meds at the hospital today and go for them intravenously for 3-5 days.

Wow was that hard to hear!  I knew it would be, I just didn't know how hard it actually would be.  I went to my bedroom and cried harder than I have ever cried before.  Thankfully my oldest Cole was at a sleepover and the two younger  ones were downstairs completely oblivious of what was going on right now. In that moment I finally asked God "why"?  Why couldn't He make it better?  He makes people better all the time.  Why not me?  I know all of the Sunday school anwers, that God has a plan and He works for the good of those that love Him...yada yada yada.  I wasn't feeling a whole lot of comfort right then and there, I was feeling hopeless.  Like any small thread of hope was gone.  It was so final when I heard those words! 

Anyways soon after, Shawn took me to the hospital and I got some meds intravenously and if the symptoms aren't getting better by Monday then I need to go see the neurologist again.  I have an IV in my hand until that is done and it is not very comfortable :)

I am writing to you now because...well...I can't sleep.  I'm not even tired.  So when I say today I mean October 19th.  

I have had plenty of time to think and pray tonight and I do feel comfort resting in God's peace.  He is stronger than I am and I need to lean on Him right now for everything.  I know some of you reading this don't know what I am talking about but I pray that one day you do.  And I thank eveyone for the indescribable amount of support you have shown me!  I really do feel overwhelmed.  I have heard from many people whom I have lost contact with, those I don't talk to on a regular basis and new people all together!  So thank you, thank you, thank you!  I try to respond to everyone but it has been really overwhelming (in a good way), but please know that I have read EVERY SINGLE post or letter you have sent.

John 16:33 I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.”

Losing Independence

So I'm starting to understand that this is very unpredictable.  I had to cancel my volunteering engagement at the school today.  I think I bit off more than I could chew.  The last 2 days I felt great in the morning and completely exhausted by the afternoon.  Not just sleepy exhausted but my legs just didn't want to support me and my arms are really tired.  Today it's been like that since this morning, however I've still been out and about.  Now I need to do some more running around in a couple of hours.  I hope I can get through it all.

Yesterday I lost part of my sense of taste but only for a few hours.  It was the weirdest thing ever.  And it happened "just like that". One minute I could taste and then an hour later, I could hardly taste anything and I got extremely light headed.  I'm not sure what that was all about but it's worrysome.

I'm also getting really anxious for my results of my last MRI so I can start some meds.  It scares me that new things are happening and that it's not getting better on it's own.  It'll be 5 weeks tomorrow since this new bout has started so I had a good cry last night when I went to bed.  I don't really ask God why, but I get mad and say that this sucks!  I am quite independant and asking for help is actually just too much for me to do right now.  I just can't say that "I can't do it".  I don't want people looking at me weird when I ask for simple stuff.  I've had lots of people volunteer to help out but how do you ask someone to come over and do your dishes or wash your bathrooms or cook you food??  I just can't do that, I can't....Imagine phoning up your friend and saying "oh hey, how's it going?  By the way, can you come over some time and clean up my house?"  I hate looking normal but feeling so different!

I can, "just try" but it doesn't get the work accomplished fast enough to maintain a house. 

Just Try

So yesterday was a long day...soccer tournament, hockey and I had to get the house in order cause people were coming over.  The boys helped out for about 10 min before school and then I did some cleanup for about a half hour.  Well once I got to the soccer field and had to walk ALL  the way across (lol) I realized my legs felt like jello and I was quite tired.  I wasn't as dizzy yesterday but I did almost fall down my stairs at home.  I have to realize that I can't turn around quickly...this is the 3rd time I've done that (once was in the stands at the rink) and let's just say "thank goodness for railings"! 

A big accomplishment though, was that I got part of the bathroom cleaned.  I know I said I was gonna do it 2 days ago but I never did get that far.  I say part of it because I still have the shower, but it was a feeling of self accomplishment and quite frankly if people weren't coming over I don't know when I would have attempted it.  I probably would have gotten one of the boys to do it, but they were all gone last night and couldn't help. 

So that was a bit of an epiphany for me, that I am probably feeling a bit sorry for myself and maybe a bit depressed in the sense that because I can't do things as well or as easily as before I won't do them at all....sooo the new goal is to TRY. If I start doing things I will probably feel better, because I feel like I am being useful again.  They can be small goals, like part of a bathroom. Just look at how much even something tiny like that has helped my spirits.

Thank you everyone for your encouragement thus far.  It really has been truly amazing and I've only just begun.... 

Video

This girl describes it very well. She references quite a bit (especially at the beginning) to being drunk and taking drugs but in the end she does clarify that that is the best way to describe it.  Even though you may not have had those experiences you can imagine what it would be like based on people you've seen or movies you've watched. 

My experiences are not as extreme but are all present in some form except for the slurred speach.

<iframe width="420" height="315" src="http://www.youtube.com/embed/-BGBSsKBrbI" frameborder="0" allowfullscreen></iframe>

My Journey...

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