The First Copaxone Journey

What a pleasant way to start each morning: A nice little cocktail of vitamins, minerals, and of course, a man made subcutaneous injection. *sigh* I haven't written about this yet because until recently it has been very overwhelming and really difficult to get used to. I've been consistently using the medication for about three weeks now and I must say, it is really, REALLY, (did I say really?) annoying.

My home health nurse, Brandy, came and unfortunately I was super nervous and kinda grumpy. I didn't know what to expect and just wanted to be where I am today. Where the newness has worn off and it has slowly become just another part of life. Brandy was absolutely phenomenal. She walked Ryan and I through everything and answered all our crazy questions.

We sprawled out on the table and all the Copaxone paraphernalia started to make me extremely anxious. There is was just starting at me. My new normal. holy shit I begin to retreat into the confines of my own mind. "Can I seriously get up and give my self an injection every. single. morning. For the REST of my life?? There is no way in HELL. That's super inconvenient," my inner 'faidy cat whines. My super snarky inner mother bears wakes up and adds her two cents in. She's apparently had enough and begins her tirade. "This isn't about inconvenience or about what you want. This is about what you need. This is about what you must do in order to grow old with your husband be a functional mother to your children, a good doc and later become a kick ass grandma to your children's children. Stop bitching and put your big girl panties on." My inner 'fraidy cat hisses and retreats and my mother bear nods her head with satisfaction. She stands there arms crossed with a look that encourages me to continue on. "Okay, okay.... I got this." I reluctantly begin to pay attention.

As we sat at our kitchen table Brady went through what is now my new journal and showed me how to inject myself and where. About 20 minutes into the lesson, as I watched Brandy demonstrate how to "cock and load" the auto-inject tool, I started to zone out again... I begin thinking, "There is no way in hell I am going to use that thing. It looks scary. I would much rather inject myself then leave it to some crazy tool I have to treat like a gun." My inner mother bear, senses I'm about to get overwhelmed and jump ship, perks back up and rationalizes for me. "You certainly don't have to use the auto-inject if you don't want to. We can just store it in the medicine cabinet so if you ever change your mind, it's there." I inwardly sigh and express my concerns to Brandy. She confirms that I do not have to use it and that as long as I am comfortable doing it manually it is O.K. whew! I was almost a goner.

At this point all the back and forth and in and out I've been doing inside my head has me worn out. I am really struggling to take in all the information and process it effectively. The time has come though, and Brandy asks me where I want to give myself the first shot. I actually tell Brandy
I don't care," in a very dismissive tone but what my insides were now screaming was, "WHOA THERE NELLY Why are we suddenly in such a hurry? Who said I was ready? Because I am most definitely NOT ready." My anxiety sky rockets and there are no inner voices to calm me down. A million things are racing through my head; all crashing into one another and making it hard to focus. At some point in time my right thigh was the chosen site and the process began.

As I sat in the chair and tried to pinch the required 2" of leg fat I wondered how the needle would feel. The syringe looked small so I was fairly sure I wouldn't feel it much. I wondered if the medicine would hurt going in like a Hep B shot. The nurse says no, but you never truly know until you do it. She also told me the worse part started about 15 seconds after the needle is removed and can linger up to 30 minutes. "hmmmm, that's interesting," my inner 'fraidy cat has meandered back into the scene and is quietly gloating to my inner mother bear as I become more and more vulnerable. I prepped my leg with alcohol, pinched up about an inch worth of fat and skin on my thigh and plunged the needle in at a 45 degree angle. "ok, ok... that wasn't so bad." I was still apprehensive though and took my time injecting the material inside the syringe. I took out the needle discarded it appropriately and waited. Can I just say,"OOOOUUUUUUCCCCCCHHHHHHHIIIIIIEEEE This shit hurts like hell. Brandy said I should ice it after. I declined at first. I needed to feel exactly what my reaction was going to be. I needed to know how it felt. I needed to know if this pain was something I could deal with every day for the rest of my life.....

The burn started light at first. like a fresh mosquito bite that has annoyed you because you caught the little fucker mid suck. Now he's dead and the welt left behind is an itchy hurt that won't go away. Within two minutes the burning has turned into a full blown wasp sting and all I could do was stare at gigantic mishapened welt that has formed near my injection site. "This looks nasty!" my inner girly girly shrieks. She begins hurriedly making a list of things to do to decrease the size of the golf ball that has developed in my quad muscle as soon as Im able to rub it out. The redness then began to streak down my leg and the burning became more then I could manage. Ryan gets my an ice pack and Brandy packs up to go. I was totally and utterly spent. I felt nauseous and only wanted to lay down in bed. A small part of me felt victorious but my sheer exhaustion won over and I went to bed..... still wondering:

How the hell will I do this?

every. single. day.


---Warrior

The Breakdown of a Mother (Part II)

I let the tears fall and cover my face in my hands. I have no choice now, the flood gates are open and I have to let it out. The wails that come from the depths of my soul have hidden pleas behind them. Please don't let this be my life.... I can't do this, too many needles. Please Lord, take this disease away. Help me feel better. How did I become this? TOO.  MANY.  NEEDLES. 

I decide I seriously need to calm down and since Ryan is flying somewhere over Lake Charles at this very moment, I call the one place my heart longs to be. Home. My Dad answers the call, poor man. I'm a blubbering idiot and he can't understand a word I'm saying. I'm pretty sure the first five minutes of the conversation sounded something like this:

"Hi Bet-A-Roo, How's my girl feeling?"
*serious sobbing* "the mail came, and there's needles. can't do this. overwhelmed"
"What honey? What's wrong? I can't understand you..."
*snot slurping, big breaths, more crying* "the mail. Daddy, I can't. It's too much....
Frustration and fear fill his voice as he struggles to understand what is going on,
"Betsy, honey, I don't understand what you are saying..."
*crying, frustration* "NEEDLES, lots of needles, this CAN'T be my life"
after several minutes of back and forth like this, realization hits him..... Compassion fills his voice as he says these next words:
"OH..... You got your medicine in the mail today and you're overwhelmed. Now I understand."  As he struggles to find the right words a  "Damn it...." slips out. I can tell he's trying to be strong.

We spend the next 15 minutes talking. Well, he talks and I mostly listen. I start to calm down and by the time he says, "Just take the medicine out of the cooler, stick it in your fridge and hide it behind your carrots until your nurse can come teach you how to use it!" I can't help but start to laugh. We both laugh together and it feels good. We chit chat a little longer and as we hang up he says to me quietly, "I love you Bet-A-Roo. More then you know. Well, maybe you do because you have kids... I better go" I know my break down has affected him. I say goodbye and it makes me sad. I don't want my Dad to hurt but quietly thank God that he answered the phone. These rare moments are few and far between and I'll tuck these few minutes with Dad away in my heart and cherish them always.  That man's man, cowboy, with his bushy mustache and wranglers.... he is just what I needed. Thanks Daddy, for helping me through one of the lowest moments of my life in a long long time.

I gather the courage to stand up and I ask my children to give me a few minutes alone. They had sat quietly by my side on the kitchen floor through the entire conversation with my Dad. They don't say much as I walk into my bed room. I find myself on my closet floor now, talking to my boss via text and staring at myself in the mirror. Its a huge full mirror that spans from the ceiling to the floor and big enough for two people to look at themselves in. My face is bright red and puffy. My eyes are swollen and shiny. I have mascara smeared down my right cheek and on my forehead on the left side. I cock my head to the side and wonder how I got the mascara there. I try to wipe it off but only make it worse. I give up and just stare at myself.

I've become so thin recently... It's weird to see. After Chiropractic school I gained about 10lbs. Even after having Ryker boy, I lost all the baby weight but went right back to what had become my normal 128lbs. My now 116lb frame looks so different to me. I definitely wanted to lose weight, but NOT like this. I still can't decide if Im happy or freaked out by it. I touch my face again and wonder what the hell is going on inside my body. Why can't I be normal? I will my brain to heal itself as I stare helplessly at my frail frame. I begin to wish I lived closer to my family. How the hell am I supposed to do this by myself? I'm honestly not sure I can. I can't even hold it together for a day. I feel like a terrible mother and begin to cry again. I turn away from the mirror and lean against the wall. Please God, help me be functional for my children. They need the best of me.... please help me find the strength. I rest my head a few minutes longer and finally get up.

I make my way out to the kitchen. The kids have dispersed and I hear them playing upstairs. I walk over to the cooler and take the medicine out. My heart skips a few beats and my breathing starts to become shallow. I close my eyes and take a few steadying breaths.

I open them back up and stare at its contents for long minute. I think in my head, "What the hell am I supposed to do with this stuff.... I mean seriously? I can't wait for a day when this stuff doesn't make me anxious, when it has become just another part of my routine. I wrap everything back up and put it in my fridge and shove my left overs and yogurt in front of it. (I tried the carrots, but they weren't big enough.....)

Its been sitting in there for 3 days now. Every time I open the fridge it peeks out from behind the dirty rice and pork chops and screams, "haaaaaaayyyyyyy!!!! don't forget about me!! I'm your new best friend, remember??" I occasionally answer back with random bits of hatred like, "yeah, yeah... I haven't forgotten about you, you jerk" or "shut the hell up, all I want is so damn milk."

My nurse is scheduled to come out tomorrow after work. Ryan will finally be home again and I'm thankful he will be there with me as I learn to use it. I'm still not sure if I'm relieved or scared as hell. I try to remember what my Dad said, "This is your new ok. Don't look at it as a burden. Look at it as what is going to help save your life. It's going to be OK honey." This phrase has lingered in my head and I echo it out loud often.

It's going to be ok.....

It HAS to be, right? I don't really have a choice...

---Warrior

The Breakdown of a Mother (Part I)

As I write this, hot tears slide down my face and burn my cheeks. I wonder if I will ever feel 'normal' again. A sweet little blonde angel snuggles close to me and she smells of Dove bath soap and V05 shampoo. As I gently kiss her sleeping head I pray to God, Please Lord let me be a fully functional Mother for Savannah. Let me be a grandma one day. Did I really just say that? I just want to grow old and be there for my children..... Amen. 

The scene from the evening replays in my mind and I find myself shaking my head in frustration. I pinch the bridge of my nose and cuss at myself. I let my emotions get out of control and now my kids are scared and I'm a hot damn mess. excuse my french but fucking great.  How do I undo the damage I caused? *sigh* Bare with me as I try to describe to you the events that lead up to and that immediately followed my break down. 

In honesty, I knew it was coming. I could feel it brewing for the last few days. Boiling steady just beneath the surface. As my patients began to find out and friends become more brazen, the steady stream of, "How are you doing.... mentally?" seems to be on everyone's mind. "Mentally? I'm totally fine...." At the time I didn't think I was lying. Most people's inquisitive looks turn to concern as they casually say something along the lines of, "Maybe you should find a support group." I end the the inquisition by moving on to a new topic but somewhere in the back of my head I wondered when is this really going to hit me? 

As the days wore on and my energy waxed and waned my "mental" health started to cross over the line from fine, to wtf and now, to holy fuck. Yes, the f-word seems to consume me right now. I can't help it. I'm really really angry and scared as hell.  Even though I'm struggling to find the energy to get through my days, I somehow drag myself to the gym in hopes to find some spark. Instead fatigue smacks me in the face and drains every ounce of life I seem to have in me. 

Then, I come home to this......

My medicine came in today..... Even looking at the picture makes my anxiety sky rocket. What the HELL is in there, that is a BIG damn cooler..... At first I ignore it. As I sit down to eat with the kids, I feel it waiting for me. Almost taunting me. I keep looking over at it like maybe it will disappear while I am eating. I want it to go away. It is the big elephant in the room (except its white and made of styrofoam).  When I've ignored it long enough, and I realize all my wishing isn't making it blow up into a million pieces, I finally decide to look inside it. I take a steak knife out of the drawer and begin to cut the tape. Hundreds of thoughts race through my head and I find myself mumbling, "I don't want to do this. How the hell do I do this?" Of course by now the interest of my older son has been piqued so he makes his way over to me and throws his arm over my shoulder. "You Ok, Mom?" I ignore his question and open the box. 

 At the sight of this I begin to cry. I take the box out and examine the contents. 30 pre-filled syringes of Copaxone.

Oh. 

My. 

God. 

This is what my life's become? This is what I have to do for the rest of my life??

I.

CAN'T.

DO.

THIS.

As I slide to the kitchen floor, sobs rack my body. Cries of pure anxiety echo through the kitchen and soon all three kids are at my side. Not knowing what to do, they sit along side of me and stare wide-eyed. At some point Savannah begins to softly cry. I lean in to her and whisper that everything is going to be alright. I try to compose myself but what I really want to do is throw a huge tantrum.  I want to pick up that damn box and chuck it out a window.  I want to kick my feet and bang my fists and scream out at the top of my lungs.

to be continued......