What is "NORMAL"?

It's been almost a year since my world was turned upside down by this dreadful disease. Almost a year since everything I thought I knew about my life was taken from me. It's been almost a year since I was diagnosed with Multiple Sclerosis. 

I haven't posted much in the last few months. Mostly because I haven't known how or even what to say. These last few months have been filled so many ups and downs that It's hard to articulate all that goes on inside my head. Some days, most days in fact, I am so over come with pain that I can't even remember what normal feels like. What is "normal" anyway? Normal is such a fickle word. Thrown around carelessly with no true meaning to anyone besides the person using it. I can tell you this for sure. My definition of normal sure has changed. If you would have asked me a year ago what it meant, I would have told you something like, "Normal is relative... it is a range. Everyone's normal is different and can fit within this range. My life for example is normal to me, but to most people it most definitely is NOT. Most people don't consider a spouse being gone 80% of the time normal. To me, it is just how life is." Now my definition of normal goes something like this, "Normal is relative... it is a range. It is a forbidden word that eludes me and I have forgotten where it's boundaries lie." 

I have yet to find a new "normal" that I am okay with encompassing. My life is centered around my pain, my clumsiness, my forgetfulness. It is centered around monthly IV infusions and prescribed medications that don't work. My new normal is one of sleepless, pain filled nights, and long overwhelming days. There never seems to be an end in sight. 

I can tell you this. I would love for my new normal to be something along these lines: Normal is relative... it is a range. It is where I can manage my pain and my whole world doesn't revolve around it. It is where I live a life with MS but it doesn't define me. It is where I can say with confidence, "EFF you MS, you are my bitch and I own you. Bring on the next 30 years." 

I still don't know how to get to this point. Things seemed to have gotten worse, not better. I'm just so tired and completely over this dreadful disease. I wouldn't wish it on my worst enemy. 

Until next time

Warrior

(although I don't feel like much of one lately)

The Breakdown of a Doctor Part 1

It has been a very long time since my last post.... and frankly a lot has happened. Much of it has been heartbreaking and very turbulent. During the worst of it I couldn't bring myself to write about it, it hurt too much to share this with ALL of you. As the days passed on, my anger turned to embarrassment.  This part of my story consumed me and I knew that I couldn't write another post until I was able to tell it whole heartedly and honestly.

So, here it goes. During the week of Thanksgiving 2012 I was fired from my job. The events that led up to this were terrible and borderline illegal. I will never again allow myself to trust and lean on an employer the way I did this doctor.

For you to fully understand the depths of my frustration with this situation, I will need to start from the beginning.

When I was diagnosed in October I was an associate doctor at a very busy clinic.  I worked an average of 50 hours 6 days a week and I was the only doctor at this clinic 95% of the time.

Ill try to break down the events that lead to me being let go the best I can so maybe you can see why this has been so incredibly painful for me.

The first week in October is when I woke up with a high fever, aches, and chills. Since I was the only doc at that clinic I could not call in. We had just hired a part time doc the week before but he was still training and did not have a set schedule yet. By Wednesday my fever was gone and it was replaced by the worst headache of my life. My vision was gone and colors were distorted in my left eye. By Thursday I knew something was very wrong and told my employer I needed the next afternoon off.

After a series of tests and 2 MRI's the second week in October it was confirmed that I did in fact have MS. The next steps I had to take would be finding a neurologist ASAP. I could not get an appointment until that Friday so during the week I continued to work. My husband drove me everyday because my vision did not allow me to drive safely. All the while I still had a horrendous headache. On that Thursday I worked an outside event at NASA massaging potential patients for 4 hours. I was unable to function by the end of the event and asked if the newly hired doc could take my place in the clinic during our afternoon hours. My boss was less then understanding and this became a sore subject for us both as time progressed.

After seeing my neurologist it was determined that I need a course of IV steroids. This procedure was a daily thing for three days that took up a better part of two hours. My boss and I determined that I would not work in the clinic but only do outside community events for the third and fourth weeks in October. Or at least that was the plan.  During this time my boss also decided that I should go from being salaried employee to an hourly employee. Even though I signed an employment contract stating I would be a salaried employee I never signed a new contract stating that I would now be an hourly employee. She requested I keep a documented log of when I worked and give it to her weekly until further notice.  That third week went as planned and I worked about 25 hours.

By Sunday, though,  the plan had completely fallen apart.

The fourth week I was back working full time but, still on an hourly wage, because the part time doctor didn't work out. Come Friday I had logged 40 hours and prepared to go to our quarterIy seminar in Dallas in which I should have received over-time for. On our way up my boss decided she didn't want to pay me over-time for attending the seminar in Dallas so she put me back on salary effective Friday end of working day. We came home late Saturday night.

I continued to work full time for the next 3 weeks, with only a slight modification to my schedule. I was  eventually given Tuesday afternoons off (after I attended our weekly staff meeting) so I worked 4 hours less each week. I still worked every Saturday and through my lunch on Wednesdays. Although it did help, it was not enough. One day of rest to recuperate from a long week was not enough. Not to mention the fact that I never truly rested from my initial flare up.

The week before Thanksgiving I got sick with a bad cold/sinus infection. My general practioner mentioned I should try to be part time for a few months while my body tried to finish healing.  I told her that should not be a problem because we had hired a part time doc before and I was confident my employer would be open to the idea.

Oh how very wrong I was..........

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......

The Next Step....

Today was very exhausting. I had my follow up with my neurologist, Dr. Blum and it wiped me out emotionally. The anticipation of talking to him caused me a TON stress.... My little blue MS notebook that I carry with me was filled with questions and new symptoms I'm experiencing. Questions about the disease itself. Questions about the medications. Questions about complimentary and alternative medicine. Oh where to start and what to say!! My feeble mind had been on over-drive and it is tiring!!

From the very beginning Dr. Blum has been amazing and today was no different. This wonderful medical doctor spent a 45 min talking to me about my disease. Yes, I ACTUALLY timed it. He discussed my disease progress in depth and detail, as one health care professional to another, and really put my mind at ease. Thank you Brian and Mary Orsak for the phenomenal referral. I am confident that together, Dr Blum and I have laid out a treatment plan that will help keep me in remission and out of relapse for a long, long time.

So what exactly is the next step? Ryan and I put a lot of thought and debate into our final decision. It was not one we have taken lightly. This is MY LIFE. I am only 33 years YOUNG.  Multiple Sclerosis has turned my whole world upside down and that, my friends, seriously pisses me off. I want to fight this disease process as aggressively and as thoroughly as possible. I CANNOT and WILL NOT allow this to rule my life anymore.  

So, this is ultimately what it has come down to:

- I WILL (first and foremost) have a positive mental attitude. Dr. Blum and I discussed the power of the mind and how staying positive improves over-all health in general so, in my case it is even more essential. Those of you that know me, know that generally I am a very happy person and annoyingly positive and optimistic. This hasn't been the case the last few weeks, and I really need to work on that.
- I  WILL start on the drug Copaxone. It is a once daily injectable into the fatty layer just under the skin. It is a drug that stimulates myelin (the coating around the nerves) to be made and also blocks my immune system from destroying it.
- I WILL change my diet, cutting out inflammatory foods, most processed foods, and sugar. Though there are no studies that suggest diet itself helps the course of MS, again, this is an over-all life style change and it surely isn't going to hurt me.
- I WILL exercise 3-4 times a week for at least 30 minutes. This will consist of things such as jogging, yoga, or light weight training.  Dr Blum says this is probably one of the most important things to do because staying strong physically and limber will help combat any relapses.
- I WILL cut back my stress from work. Anyone who knows me, knows I am a work horse. I am balls balls to the wall, full throttle 100%. I will ALWAYS give my patients 100% of me, that is not the issue. but, it doesn't mean I have to allow myself to be over-worked. I HAVE to find a balance.

Essentially, I WILL take care of ME because I can't (as a mom, as a wife, as a doctor) take care of anyone else if I am not well. I am too young. I have to be able to see my children grow up and have children while maintaining a good quality of life.

I will learn DEAL with my disease, not DIE from or become DISABLED by it. There is NO alternative. period.

I AM a Warrior.

--Warrior

Back to Work :D

So, I finally went back to work for a full day since my IV infusion therapy. I was a ball full of emotion!! I was unsure how my body would hold up, scared I wouldn't be able to preform my job duties correctly, and nervous that my 'brain fog' would set in and it would leave me bumbling like an idiot.
I won't lie, the day was hard but I did so much better then I thought!! Being with my patients again was AMAZING. I missed them all so much and the crazy thing is, THEY missed me as well! I got so many "I'm so glad you're back Dr. Wilson!" And "No one takes care of me quite like you do!" I even got a "You know, you're the only one I really trust with neck." It made my heart happy to know that all the time I've spent caring for my patients has truly paid off. I'm irreplaceable *evil laugh inserted here* But really, it feels good to be needed and to know that my patients trust me enough to heal them.
I'm not back to full time yet, but it is my goal to be back in full swing with two more weeks. I have a few more things to sort through and a bit more rest to catch up on!
OH YEAH!! I forgot!! I got the results from the MRI of my neck back!! My spine is perfect!!! The only MS lesions I have are in the brain! YAY!! Thank you Lord. Now could please fully restore my vision and take away the last bit of fatigue? I know my mother-in-law is tired of Driving Mrs. Daisy and would love to go home to her puppies and party barge! Thank you, amen.

Well, it's time to start my day. My fattie is making raspberries at me from his crib and I'm pretty sure he's already dreaming of pancakes and banana!

I am making strides.... One day at a time.

---Warrior