What doesn't kill you, makes you stronger!

The saying is true, what doesn't kill you makes you stronger! And this song is absolutely one of my theme songs! I have been dealing with some major medical challenges over the past 8 months or so, yesterday, I met with a new specialist who is running new tests looking for new "stuff” and it appears I may have been misdiagnosed all these months. Here’s what’s going down, I will not live in fear! It doesn't matter what they find or don't find I know what I know and I know who I know. What I know is I have witnessed a transformation in the last few months, I am getting stronger and healthier every day and I won't let anyone tell me different! What I know is I am strong, I am fighter and I am not taking anything sitting down or lying down! But most importantly WHO I know is a mighty God that is the Chief Attending Physician in my life! Nothing else matters! #wegotthis!

Meanwhile… While they do all that I’m going to be over here doing this: C.I.P. is Born!

By the time I went to the new internist, I was sick and tired of every dam thing and I was desperate to gain some control over my body. The one thing I knew one thing for sure… being overweight was not going to help my situation. You see, I have always been a “thick” girl,  you know... curvy. After our first child was born I had a hard time maintaining a healthy weight but I eventually got it together.  Because I was on bed rest most of my second pregnancy I gained quite a bit of weight, after she was born, it was very difficult to loose. Until 2010, that year, I lost a good amount of weight and I was taking pretty good care of myself even though, I did fluctuate up and down a few pounds here and there, it was nothing too serious. After I got sick in November 2011 with this mystery thing, I quickly started to gain weight, almost overnight! It was obvious, the one thing I could do to help myself while these Dr’s were busy poking around, running scans and tests, was to try to gain some control by being proactive in my own health and wellness. the truth was, I was not taking good care of myself as I should have been, I was not eating well nor was I exercising, though at this point even if I wanted to, it was difficult to exercise due to constant episodes of vertigo, migraine headaches, paralysis and loss of vision! But nutritionally speaking, I spent many days loading up on gallons of coffee and most of my nutrition came from mostly processed foods with the occasional healthy salad chaser in between. My hope was, if I got a grip on what I was putting into my body and got moving even a little bit,  I  could begin to put the lid on this constant suffering and fear.     Light bulb!   

 

C.I.P. is born!

Armed with an awesome internist, two nutritionists, a gym membership, a personal trainer, a kindle loaded with books on health and wellness, juicing and cooking healthy vegan food (yep I am a vegan now), a shiny new pair of sneakers, tee-shirt, yoga pants, and a drive and determination like I never knew I had in me; I set out on my journey to gain control of my life and health.  I want to live, I want to be present in my children’s lives, I want to play with them and laugh with them. I want to be the lively fun and sassy wife my husband married not the broken, crying and sick in the bed person I had become.  It was time to take control and take action! I have it in me to do it and  I am going to do it!   

So far I have lost 50lbs! This journey has been, challenging, scary, educational, fun and empowering. I have had ups, downs and a few setbacks. I have cried, laughed and cried again. I have rediscovered a part of me that I thought was lost. I have found a new appreciation for life and living. It’s amazing really, but when you come “this” close to what you think could be the end on an almost daily basis you appreciate every little moment just that much more. The things I have taken for granted...well it just proves the saying, you truly don’t know what you have until it is gone!  I thank God every time I lost an ability... it came back. I thank God every time I suffered a migraine torture session that it came to an end without my brain exploding! But I realize the truth is, it could have easily gone the other way around on any number of occasions, like the time I lost my sight and I was sure it would not return! I literally thank God when I open my eyes in the morning to discover I am still alive and I have all my abilities in place! Did you ever wake up early just to watch the sun rise? These days, I do that often. This experience has changed me in ways I will probably never fully be able to explain. But I can say at the end of each day when I am resting my head on my favorite pillow the thoughts that are going through my head are those of gratitude.  Thank you God!

So what the hell is it?

Its been a few months since my life as turned up side down, I am working with the second neurologist and so far so good, she is going to run new tests and start the evaluation process all over again.  I have been dealing with this random torture of about 9 months at this point!  Once I get all of this done and over with I will know once and for all what it is and what it isn’t.  Once again I need to wait for my insurance to approve the "necessary" tests! So for now, its still a mystery diagnosis and you will find out what the hell this is when I do.  

Progress ...

100lbs on the leg press! What's the big deal? When I started I could barely press 55lbs, now I can press 100 lbs effortlessly! I feel like I'm getting stronger every day! Progress!!

Time for something new:

Fast forward it is several months later April, May… I don’t know, but it’s been a while, I have not seen any real improvement  and,  I am pretty sure with all the drugs that have been pushed though my system  my liver is toxic! I honestly felt like the whole medical system was failing me and I knew even though I was miserable and sometimes felt like giving up, the truth was I did not want to give up, I wanted to get better and I would do anything to make that happen! I had to be proactive about this situation, I had to take control, I had to stop being passive, I had to find someone to listen to me!   

So, I found a new internist! Love her!  She actually spent time listening to me! Go figure! Together, we came up with a game plan for us to get to the bottom of this once and for all. One of the things we agreed on was I needed to get a second opinion for another Neurologist as soon as possible. I must admit, I was afraid; I was thinking the worst and there was a part of met that did not want to know what might “really” be going on here.  What if I found out it was something life threatening, would I want to know? Maybe they are correct on the first diagnosis and I should just stick with it? But, I wanted so desperately to feel better for once!  I just wanted to be a part of life again. I would give almost anything to have a normal day. Maybe I should get a second opinion, what’s that saying? Knowing is better than not knowing?  Yes.  True, I guess...So,  scheduled an appointment with a new neurologist.

Drugs… Drugs… and more Drugs (and not the good kind) :

I must have “tried” at least 6 different types of medication to either prevent or relieve my symptoms. Each medication had a new and very unpleasant side effect.  It was pure torture!  Not to mention, I spent many  nights, mornings, weekends with my husband by my side in the emergency room getting intravenous pain medication for the migraine headaches that were so bad I was sure they would kill me.  All my husband could do was hold my hand or place cold and hot compresses on my head or neck to try to help relieve the pain. When the oral medication and compresses failed or I just could not take one – more - second (some of these episodes lasted several days!) we gave in and went to the ER for treatment.  I have quite the collection of IV scars on my arms to remind me of the torture and torment I have endured.   So far, since this mystery illness began, I have lost my sight… literally I went blind a number of times, I lost my hearing once, blurred vision became a way of life, I have been paralyzed on one side of my body or the other, dealt with frustrating stuttering and slurred speech, and the vertigo… the vertigo is horrific! I was sure at some point I might just die! I became so horribly depressed I remember sending a text to a friend that said “If I wasn’t such a coward, I would kill myself.”  I spent days crying and I could not go to sleep without my husband right beside me because I was so afraid that tomorrow would never come for me. It was a horrible existence I was living in pure misery. I honestly didn’t think I could take much more. Remember this all started in November 2011 at this point I was dealing with this suffering and torture on and off for several months, something had to be done or I was going to loose my mind!

Pick my brain:

The saga continues, after some very frustrating searching I found myself a neurologist, at this point I think its around late November. A friend referred me to someone that was said to be quite the expert in the field and if anyone could pick my brain and find out what was wrong, it might be him. So off I went.  I took my husband with me for support not only because I was still “unstable” on my feet… (that vertigo is nasty! ) but, because I was also an emotional wreck.  I needed someone with me that had their head on straight, and no one has a straighter head then my husband!

After a quick exam and review of my MRI and medical report he assured me he could help me, he was going to start "exploring" treatment immediately.  Humm... OK. To be continued…