Sunday, January 31, 2016

Guillain-Barre Syndrome: The Beginning Of The End

Imagine being 22, a mother, a stripper, athletic, tall, strong, fit, and just beginning to grab life by the balls and make some very real and good changes.  Now imagine you begin to feel "funny".  Things start to happen that are odd.  You're body aches and is painful and weak, but you don't have any other symptoms to lead you to believe you have the flu.  You're not congested or stuffy.  But, the body aches sure do feel exactly like you have a bad case of the flu.  The weakness is weird, though.  It's not the kind of weakness you can just fight and be exhausted by the end of the day, it's a weakness that causes you to drop things and literally be unable to carry that tray full of drinks or anything heavier than a glass of water.  Add to all of this, you're leaking -- down there.  It's not urine, it's not vaginal discharge, but something is definitely leaking from that area.  A clear liquid of some kind?  What the hell is happening to my body?

It's the holiday season so things are busy.  You are living in a condo that your boyfriend's mother owns, but you both spend a lot of time at his parent's house.  One night, you are helping his mother get out the Christmas decorations and decorate the tree.  The odd leaking is still happening, but not quite as bad, and your body is still achy and weak, but you've learned to deal with it as best you can.  Your boyfriend is out with his brother drinking.  So, around 2 a.m., the mother comes into your room and says your boyfriend needs a ride home from the bar.  So, being the good girlfriend, you go retrieve him from the bar.  You are realizing things are not right with your body, but you're scared to tell anyone.  You were raised to be strong and just fight things internally.  Don't show weakness.  Don't let anyone know you might not be the super strong, super fit, super woman they all think you are, but it's getting more and more difficult to keep it to yourself because now you are truly getting frightened.

This body is failing.  But, how can that be?  How can a young and strong body like this just all of a sudden begin to shut down?  I've been drinking tons of water.  I have decided to quit dancing and become a cocktail waitress while I figure out what to do with my life.  I've been exercising even more and eating healthier.  What have I done to deserve this?  I drink alcohol occasionally, but I don't do drugs.  Hard to believe, I know, but I don't.  I really am just a single mom working to take care of her baby and trying to better her life bit by bit.  So, why is my body giving out on me?  Why won't my body get on board with what my mind wants to do in life?  What is going to happen to me?

I'm about to find out.

I'm at work, and I'm doing the cocktail waitress thing that I've done a hundred times before, and it's getting harder and harder to carry these trays.  The girls are looking at me like I'm lazy or just don't know how to do my job, and none of that is true.  I still haven't told anyone, but my body is failing.  I'm so weak, and I even begin to trip sometimes and almost fall because my legs are giving out.  I'm drinking a lot of water, but I can't pee!  I keep getting the very strong urge to pee, and my bladder is obviously full and is starting to hurt, but every time I sit down to pee, nothing comes out!  What kind of shit is this???  What could be happening to me that is making me unable to empty my bladder?  I've never in my life heard of anything like this.  Now I'm petrified.  Yet I continue to go about my business and do my best to finish out the night.  I get home at around 2:30 a.m. and just go lay down with my boyfriend and my baby and think to myself it will all be OK tomorrow.  

I've never been more wrong.

After waking up at around 5 a.m. unable to sleep because my bladder now hurts so bad I can no longer stand the pain, I try taking a warm bath.  I try doing the hand in luke warm water thing while sitting on the toilet.  I tried everything.  Nothing was working.  Finally, I went to my boyfriend and told him what was going on, that I couldn't pee and hadn't peed since about 2:00 p.m. the day before.  I need to go to the hospital.  And now, to top it all off, I have my period.  So, we go to the ER on December 23, 1997 and it's extremely busy - to say the least.  They can't see an obvious injury, and even though I'm now in excruciating pain throughout my entire body and my bladder is making my tummy look like I'm four months pregnant, I am forced to sit in a little plastic chair writhing in pain for hours.  First, they didn't have a room for me, then when a room opened up, there was no bed.  I sat in this little plastic chair in the room for a good hour before they finally had an open bed.  I get in the bed and the nurse comes in and inserts a catheter to empty my bladder for me.  She is shocked at the amount that comes out of me!  The bladder is only supposed to hold around 500 cc's of liquid, and mine produced 2500 cc's!  Then the doctor comes in and decides he's going to do a pelvic exam.  Because of my inability to urinate and the pain that I'm in, I assume he is thinking the source of the problem is in that area.  

This very impatient and unpleasant doctor gets frustrated that I'm on my period and there's too much blood for him to see anything, so he gives up and just diagnoses me with herpes and sends me home with pain medication and medication for the herpes.  I am mortified, but I am also just glad to know what's wrong and that I am going to get better -- or at least that's what I thought was going to happen.

We leave the hospital and get my medication which I begin taking right away.  We decide I should eat something, so we head to Chick-Fil-A to get food and in the drive thru I am forced to open the car door and vomit into the bushes.  OK, so my body doesn't agree with the medicine, that's normal.  So, I eat the tiniest bit of food that I can possibly force down.  My boyfriend wants to do Christmas shopping (very typical of a man to wait til December 24) so I decide I will try my best to go with.  We head toward the mall and I realize there is no way I can handle shopping and walking through the mall.  I'm too weak and too sick.  So, he drops me off at our condo and he and my daughter go do the shopping while I get some much needed rest.  I passed out in our bed and didn't wake up until he came back a few hours later.  It's time to go to his parent's house, so I get up to head out and immediately collapse to the floor.  My legs simply gave out!  Oh my God, what is going on?  I guess the medicine is just making me this weak.  OK, you can do this, just gather yourself and muster all your strength.  Your daughter needs you.  I manage to make it out the door and down the hall, bent over and trying my hardest not to fall again.  I make it out the door of the building and collapse in the bushes vomiting more.  At this point there really isn't anything in my stomach to come out, but my body is trying to get rid of something.  I make it to the car to my very annoyed boyfriend, and we go to his parents house where I go to bed and don't come out.  It's Christmas Eve and I'm trying so hard not to ruin anyone's Christmas.  I keep thinking it's just the pills I'm taking and that in a couple days I will be better.  I'm fading in and out of consciousness, but on the other side of the door the family is progressively becoming more and more worried.  I haven't eaten.  The only fluids I will drink is a sip of water to take my medicine every four hours, and I have not left the bed once.  I'm not using the bathroom.  Nothing.  What. The. Hell. Is going on?

I keep telling myself I'm going to be OK.  This will pass.  Don't ruin anyone's Christmas by making someone take you to the hospital.  You will get better.  Even though my body hurts so bad now that not even the pain meds are working, and you're starting to lose feeling in your feet.  The pain in your arms and upper body is so excruciating you can't move without screaming in pain, but you're going to be fine.  Just get some more sleep.  You'll be OK.  Meanwhile, my boyfriend keeps coming to check on me and asking me if I want him to call an ambulance.  I say "No" every time and assure him I'm going to be OK.  But, it's becoming more and more clear to me I am very much NOT OK.  

My life is about to change in a way that most people will never experience.  I am heading down a path that you tell yourself "that would never happen to me".  It's happening to me.  Something is very, very wrong, and on the morning of December 26, 1997 I am starting to lose my ability to breathe and finally succumb to the reality that if I don't go to the hospital I am going to die.  Boyfriend calls and ambulance.  

As they are trying to load me up, the pain is immeasurable.  I don't want them to touch me or move me.  My memories of this are intermittent and faded, but I do remember the pain.  It's the kind of pain that sends a person into shock.  The kind of pain that can kill you just because it's that bad.  The kind of pain that causes your brain to detach itself from reality so you don't die.  I don't remember anything after getting in the ambulance.  I remember the threshold of the doors hurting so bad I wanted to die just to make the pain stop.  They lifted me into the ambulance and I remember screaming from the pain.  Once in the ambulance, the EMT asked me what year it was and who was president and then it was lights out.  I don't remember the ER, I don't remember anything until a scene that plays in my mind over and over again of me, barely able to speak because I'm losing my ability to breathe, and my boyfriend is sitting next to my bed.  He looks so distraught it's heartbreaking, and in my mind I know I'm dying.  I had an overwhelming sense that I hadn't told him how I felt about him enough.  I needed to tell him how much I loved him, but I can't breathe and I can't talk.  I feel myself slipping away, but I want him to know how I felt about him before it's too late, but I can't physically get the words out.  I start to realize all the things I didn't say to all the people in my life who needed to hear them.  And then once again, the lights went out.

Thursday, January 28, 2016

Today Is Good

This photo was taken in August of 2014 when I still felt "good".  Back then my legs were still weak, but at least they were flexible and didn't hurt.  This is the trail that I go to in the summer to workout.  My only source of cardio is pushing in my chair for miles and miles, so that's what I do.  Lately, I've been in so much pain and my legs have been so bad that I can barely even do this one thing that I love so much.

Last night's bath seemed to have helped, although I'm not sure if it's that or the fact that I took double the dose of my muscle relaxer.  I'm sure it's both, but mostly the medicine.  I had to sleep.  I couldn't be a tired, cranky, painful grandma for my grandson today.  He will be here in a half an hour, and since I slept I can't wait!

Wednesday, January 27, 2016

What Happens At Grandma's Stays At Grandma's

I feel fortunate to still be able to take care of my grandson while my daughter goes to work as a CNA.  My hope is that I stay well enough through all of this to continue to care for him.

Just Got The Call

I just received a call from my neurologists office that my insurance approved Mayo, and now Mayo is reviewing my files.  I should hear in 10-14 days if they've approved me and when my appointment will be if they have!

Please, oh please, let them approve me and take me in and figure out what ails me! (praying)

I Miss My Body

I miss the young,  healthy, strong body I once had. The one that could do just about anything. I could move an entire home full of furniture by myself. Carry king sized beds, TV's, stereos, etc. I was strong and fit and able.

I miss being tall and statuesque. Towering over just about everyone and the looks I received because of this. My overly strong legs that seemed invincible. I could do anything I wanted. Life was my oyster.

That was stolen from me by this rare, strange, and unexplained illness which continues to rob me of life's small freedoms. Driving, using the bathroom, sleeping, all of it. It has taken my abilities and continues to chip away at whatever I have left. It has yet to break my spirit, but that, too, is being chipped away with every night of missed sleep and every painful transfer to the passenger side of my own car that I haven't driven in months. Just another of one of my favorite freedoms I've lost.

I just want my strong body back. I want to hike and swim in the ocean. Climb stairs, run through puddles, and play in the snow. I want to go sledding and skiing, ride a snow mobile and shovel the sidewalks. I want to do everything that most people are tired of doing. All the things that people take for granted because they've never had the ability to do them ripped away in just a few days.

I want my body back. This one is painful and broken and alien to me.

Now It Is Stealing My Sleep

The one thing I have, or had, throughout all of the struggles was sleep. Now, this new development is robbing me of that, too.

I'm somewhat comfortable in my chair, but when it comes time for bed and I can barely keep my eyes open, I lay down and that's when the real hell begins. It starts with my hips going into very painful spasms and never ends until the pain is so intense I can't bare it anymore and I'm forced to sit up. So tired I'm falling asleep sitting up, I have to sit like this for an hour or so before I try the process all over again. Lay down, get comfortable, start falling asleep, get woken up by excruciating spasms that continually come in waves every few seconds until I'm in so much pain and so frustrated I want to jump off a bridge just to get some relief.

I'm on pain killers and muscle relaxers and none of it is really helping. I mean, without them I would no doubt jump from the nearest and highest bridge, but they only do minimal good. So, on top of all the pain and suffering, I'm also riddled with anxiety that I'm poisoning my body with drugs.

The struggle is most definitely real.

Tuesday, January 26, 2016

Mayo, Here I Come

So, due to my most recent issues with my legs, it looks like they are sending me to Mayo (finally!)

I am currently waiting for my insurance to approve it, then Mayo has to review my files and approve me, then they will call me with an appointment.

Because of this new update, I have created a Go Fund Me account for anyone who would like to help me out with the expenses of going to Mayo.  I live 7 hours away, so I will have to have my daughter drive me, and we will have to stay in a hotel each time we go for an appointment.  I can't ride in a car for too long, and my daughter just gave birth to my grandson so we will definitely have to rest a night before turning around and coming home.  Expenses for this will really add up between gas, food and rooms, and since I live on only disability and have no income, I am pleading for any little bit of help I can get.

Thank you!

You can visit my Go Fund Me page here:  Mayo Expenses Go Fund Me Account