Saturday, June 27, 2009

Update on Things

I went to my regular neurologist appointment on Thursday. I guess it went pretty well, but she did note a definite decline in fuction and strength in my left arm and hand. Of course, I already knew that, but it's always harder to actually hear it for some reason. My thumb, webbing, and index finger of my left hand are pretty much always tingly and semi-numb now. I can't carry anything of weight in that hand or I am sure to drop it. It's very disheartening, because I am progressing. I know it, and my doctor knows it. I'm pretty sure everyone around me knows it.

To make matters worse, I also fear I'm flaring the last couple days. The left side of my face is numb/tingly/burning quite often, and the fatigue is simply horrible. The doctor actually prescribed me Ritalin, of all things. She said it should help with the fatigue as well as the focus issues. Which, is another thing that's been getting worse the last couple of days. My eyes have also been acting up lately, and anyone who knows me getting double vision again is a huge fear of mine. I just overall feel like crap, and it scares me because I am so afraid of another full blown relapse.

It's very hard, and look back to a year ago, and see how much I've deteriorated. I'm having a horrific time dealing with heat this summer too. It's not even really hot yet, and I feel like I'm going to fall out from just 5 minutes outside. I just hate it, because I used to love the beach and being outside during the summer with the kids. Now, I feel like Multiple Sclerosis has stolen that from me along with all my malfunctioning body parts. Yes, I've hit a pity party spot in my journey. I haven't had one in awhile, and considering how awful I feel lately, I think I'm entitled. I know as always, I will overcome this flare and I will snap back out of the funk I'm currently in. But knowing that doesn't make it any easier being in it.

I'll update again soon.

Tuesday, June 23, 2009

The Beauty of Life

In stark contrast to my post about the loss of my cousin Matt, over the weekend I had the joy of experiencing the closest thing to a miracle a person can be a part of. I was at my cousin's side as she brought her beautiful baby girl into the world.

It was an incredible experience, and in so many ways, gave my heart the boost it needed. Those of you reading this that know me, likely also know Heather. She is not only my cousin but my best friend pretty much since birth. All the milestones in our lives, good and bad, we've crossed side by side. So when she called me Saturday morning to tell me she was in labor- I instantly sped off to the hospital.

I won't lie, getting there wasn't easy. My mom was borrowing my GPS, and as most know due to the cognitive issues of MS, me and directions just don't mix well. I just don't comprehend things like a normal person anymore. I can read something 10 times, understand the meaning of every single word, yet it just doesn't sink in. So... of course... the trip which should've taken an hour took closer to two hours. By the time I finally reached the hospital, I was pretty dang tired and frustrated. Thankfully, she still had a couple hours to go until active labor, so I had time to sit and rest up.

By the time came for active labor, thankfully I was recovered from the drive and ready. Not to sound totally cliche, but it was a beautiful experience. I think the moment that struck me most was towards the end. I could see how much pain Heather was in, and how tired she was, just as her baby was finally crowing. I took her hand, which
I was already holding, and gently placed down so Heather could feel to top of her baby girl's head, and whispered "that's Maria, she's almost here hun, you're doing so awesome just one more big push and she'll be here". I saw the soft smile on my cousin's face feeling her baby's head, and I saw her strength return. Within minutes after that, Maria Bernadette entered the world. Needless to say, I bawled in joy. It was such an amazing experience to be able to witness Maria finally entering this world. It truly did my heart good.

Now, from the MS perspective, I felt like I'd been hit by a freight train by the time I was driving back home afterward. I was totally exhausted, my brain was big fart of forgetfulness, my always weak and tingly left hand was pretty much numb, and all I wanted to do is go home and crawl into bed. I ended up sleeping a good 14 hours that night, as well as continued to nap and recoup the following day. It's almost funny, I mean poor Heather was the one in labor for 12 hours, yet I was the one that a total and complete mess afterward.

But you know what? It was so worth it. Watching little Maria enter our world reminded me of how beautiful life truly is. It was the exact "lift" my heart needed. It also reminded me that I can push through my own physical and cognitive limitation when I really need to. It's like I always say, I may have MS, but it sure as hell doesn't have me.

Be well all!

Monday, June 8, 2009

Keeping the Faith

I get a surprising number of emails in response to this blog. I guess it's surprising because I never thought anyone would read it except a few family members. *laughs* Goes to show you, never underestimate the power of the internet.

I have noticed something, very often people end their emails by saying they're keeping me in their prayers, but they follow it by something like "hope that doesn't offend you" or "it's meant in a good way not religious". It's as though because of the times we live in, people feel the need to excuse or explain their spiritual beliefs. So, though I fully recognize this could be a hot button topic, I feel the need to hit it anyway. Faith and dealing with MS.

Yes, for the record, I am a Christian. I do not consider myself any specific denomination, but simply believe in Jesus Christ and that He is the way to salvation. Now, before my emails blow up with people debating me on Christianity- you may as well save your breath. Nothing you can say or do is going to sway me from what I know to be the Truth. I'm not making this post to stir up atheists or convert anyone to Christianity. What I do want to touch on is how faith can help you deal with not only MS, but any chronic illness.

The sad reality is, life is rough. Even under the best of circumstances, we all have our issues to deal with and burdens to carry. For me, knowing this life is only a stepping stone rather than an ending helps to deal with it. I know it wasn't God's desire for me to develop Multiple Sclerosis. Just like all loving fathers, He wants His children happy and healthy. But also like mortal dads, He also will allow His children to struggle if by doing so it will serve a higher purpose in their lives. I like to compare it to having a child who doesn't know the value of the dollar. Say your daughter wants a $100 pair of shoes. Sure, she's a great kid, and yes you can afford it. But you also know by making her earn that $100 she will not only appreciate those shoes, but learn the value of money, hence making her a better person.

Now, that doesn't mean that daughter isn't going to be a bit ticked off that you won't simply buy them for her. She may even resent you for having to give up some of her free time to work. You may even find yourself in a sticky situation along the way. Say at this after school job, she has a boss that's a real jerk. Day after day, she comes home complaining how rude and arrogant this boss is, and how she swears he thrives on making her miserable. As a parent, your gut instinct is to run down there and ring the dude's neck. That's your little girl he's upsetting! But as a loving parent, you also realize the job is the boss's domain, and she will have to deal with unlikeable people her entire life. It's a good that she starts to learn how to deal with them now while you're there to guide her through it.

Like the daughter in this example... I too get resentful. I get angry as heck that God has allows me to have to suffer through this stupid disease. I am willing to admit God and I have had more than one little 'talk' that has consisted mostly of me screaming and swearing about how unfair this is and how I seriously pissed I am at Him for allowing it. As I mentioned before in this blog, I sank into a rather deep depression after my diagnosis, and didn't snap out of it until a relapse showed me how "good" I really was while at my baseline. In that way, whatever the circumstances in our life, we all play the role of the child that is forced to live our lives as our parent allows, whether we understand the reasoning behind it or not. where faith comes in. We have to have faith if we are going to survive this world. I have faith that God is looking out for me whether I see or not. Just like the daughter being in the jerky boss's domain, I am stuck here with everyone else in Satan's domain. Thus... I have to deal with the fact my crappy job is to live with MS. Why is God allowing me to live with this? I don't know. I wish like crazy I did. But again, that is where faith comes in. I have faith that God's plan for my life is greater than anything I could plan for myself, and I have faith He will see me through the obstacles and trials along the way.

You see, it's faith that can keep you going. If I woke every day thinking when I die, I'm just gone forever into worm food and nothing else, I'd have probably given up years ago. What would be the purpose of being here? Especially with MS? But I know there is more, and I know God is seeing me through it every step of the way until I finally come home to Him.

In the meantime, I am blessed to say I DO see little glimpses of the reason God allows me to live with MS. I have an appreciation for my life, as well as those in it, that I didn't have before. I also have met some amazing people I may not have if didn't have MS. For instance, I have a dear friend who's mother also has MS. It was that common bond that really started our dialog, thus allowing us to grow from passing strangers into something real. Ironically, he also shares my spiritual beliefs, so not only did God put someone in my life who can understand my struggles, but someone I can talk to on a spiritual level as well. Then of course, there is my activism to educate others on what Multiple Sclerosis really is and what it's like to live with. I know I've heard from more than a few they've learned something, either from this blog or speaking to me about MS, that they've taken into their daily lives. So you see, while I still pray for a cure for this wicked disease, I am also able to see the little hidden blessings that wouldn't exist if I didn't have it.

It's my faith that sustains me, and it's my faith that helps me wake up every morning and see more good around me than bad. It's my faith that allows me to rest easy knowing despite this horrible disease I live with, there are incredible reasons behind me having it... even if I have to have faith that they are there despite my inability to see them during this lifetime. It's my faith that allows me the comfort in the knowledge I'm not suffering for nothing.

So for all you emailing me with closings lines including "I'll keep you in my prayers"- thanks! Just don't ever feel the need to explain or excuse your faith. Not to me, not to anyone. :)

May God Bless You All,

Thursday, June 4, 2009

Lessons from Matt

It's been a rough week, extremely rough. I am heart broken to say, this week I lost a cousin to suicide. Needless to say my entire (huge) family is in various states of shock and grief right now. I don't pretend to know the intense, unimaginable despair Matt must've been suffering to drive him to take his own life. I'd be lying if I didn't admit that during some of the darkest moments of my own life, I'd thought about 'just ending it'. But... obviously, here I am, thus I never did. There was always someone in my life that I could say "I can't do that to this person". A reason to carry on this journey called life another day, even just another minute. I look at Matt, and it breaks my heart for reasons much beyond the loss of his life. I look at his parents, two of the most loving and wonderful people I've ever been graced to know. I look at his siblings, and how close they all are, and what amazing people each and every one grew up to be. Mind you, Matt was one of eight children, so to have all eight turn out to be such great adults is a feat in itself. I look at our enormous extended family, and how despite our faults we all love each other so much. And yet, even with all this love around him and directed at him, he must not have been able to feel it. That.. is what breaks my heart.

I'm sure anyone reading this is by now thinking "ok, this is very sad, but what on earth does it have to do with living with MS?". Actually, a lot. As I sit here trying not to itch the spot I gave my daily Copaxone injection a few minutes ago, I can't help but reflect on my own life in relation to the tragic ending to Matt's. Every day is fight for me. Be it a fight to make my hand work, a fight to walk without falling over, or a fight to speak without sounding like an idiot as I forget words. I fight with this disease daily, always trying to overcome it and always trying to find ways around it. Some days I fight just to not crawl back into bed and cry my life away at the unfairness of it all. I think that is what struck me, we all have fights in life. Some people look at me with pity and wonder how I do it. I look at people with much worse afflictions and wonder how they do it. We all can look around, and always find someone worse off than ourselves. Or can we?

Obviously, for people like Matt and the thousands like him that choose to take their own lives, they can't. They can't see past their own pain and despair to realize it really can always be worse. They completely lose their will to fight another day. In their eyes, there is no worse. So they make it stop the only way they know how.

I am grateful to still have my will to fight. To my cousin Matt... I am so sorry that you lost yours along the way, and that you felt you had no other choice but to leave this life forever. If we can all take one lesson away from this horrible ordeal, is that we are all human and vulnerable. Just because you still have your ability to look around and see that things could be worse- or can get better- please don't forget there are people out there among us that can not. Those are the people that need us to fight for them when their will to do so for themselves is gone. Be good to one another, you never know who's life you may save in doing so.

... and never stop fighting.

Be Well All,