Call it what you want… I call it a blessing:

Call it what you want… I call it a blessing:

I have quite the collection of IV scars on my arms to remind me of the torture and torment I have endured over the past year.   Since this mystery illness began, I have suffered debilitating migraine headaches, lasting for hours, sometimes days. I have lost my sight and hearing, and had continuous blurred vision. Dizzy spells became a way of life. I have been paralyzed, dealt with frustrating stuttering and slurred speech, constant vertigo and the list goes on! Sometimes these symptoms would appear one at a time, sometimes, all at once! I was sure at some point I might just die! I became so horribly depressed I didn’t recognize the person in the mirror looking back at me.  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  not come for me. It was a horrible existence; I was living in complete paralyzing fear. I honestly didn’t think I could take much more. 

After over a year of going from Dr. to Dr., Specialist to Specialist, and one emergency room visit after another, I finally found the answers and the solutions I so desperately needed. Finally, I was diagnosed with Hemiplegic Migraine.  It is a rare neurological disease that presents itself with stroke like symptoms. In severe episodes, permanent brain damage, coma, and even death are possible.   

They can call it what they want… I call it… a blessing.  What you say?! Maybe she has had one to many of these episodes! No, I have not lost it! As a matter of fact I would say I have found it!  “It” being that place of gratitude, and “it” being a state of grace and peace and the true ability to appreciate life and fully live in the moment.  

We have all found ourselves saying “life is short”! I have uttered that same statement myself a million times! I know enough about loss to appreciate the saying. I have experienced true loss several times in my life, but I never truly realized the value of my own life until I began living “this” close to the edge of losing it. I had to admit, in my previous post, Living in a Place of Gratitude, I have always been one foot in the moment and one foot someplace else. All that changed when I personally came face to face with how fleeting life truly is. It’s amazing how everything became crystal clear, like I had been walking with blinders on all this time. I had to ask myself, what the heck have I missed out on?!  Now, suddenly, I have both feet firmly planted in the present moment at all times! The mere fact that I woke up is cause for celebration!  My waking prayer every morning – THANK YOU, life has a much deeper meaning for me these days.  

I am not saying I am all of a sudden some sort of super “enlightened” being. I am saying, I have been living in a state of fear and emotional chaos and I am finally free of all that. I am lighter in spirit, a lot less stressed, and beyond grateful for the opportunity to start again.  

My transformation has amazed not only my friends and family, but medical professionals’, complete strangers, and even myself! By taking matters into my own hands and making what some would consider drastic lifestyle changes, (if going vegan, juicing every day, exercising, losing 70 lbs and meditation and yoga are extreme, then call it extreme) I triumphed over this debilitating disorder. I found out that drastic changes are what you must resort to when your life is on the line. Before I knew what “it” was I knew I had to take control. I knew I was the only one that could take charge of what was going on inside my body, mind and spirit. 

Will and determination are powerful things, more powerful than fear. I am living proof of that. 70 lbs later, I may be on my way to being in the best health of my life! Though I am told this “condition” might never actually go away, the “episodes” I was experiencing are far less frequent and far less debilitating. I have a 1 gallon zip lock bag full of bottles of medication I was on and, I have a bunch of hospital wrist bands to serve as reminders of where I was and how far I have come. 

For my next chapter, I will live my life with a little more spontaneity, face my fears, live my dreams, and most importantly, express my love to those around me daily and often because… this moment is all we have! As a matter of fact, as I type this paragraph, this moment is already a memory.  No more missed moments, no more lost opportunities, and definitely no regrets. If I knew today was going to be my last day, I would want to go into the next life dancing barefoot in the rain, wearing a pink tutu, and princess crown, laughing uncontrollably saying “dam that was fun let’s do it again!!”  This is the good stuff, this is the stuff that living is made of, and that is the stuff I want to fill my world with.  

So I say, “thank you” mystery illness “thank you” very much, you have helped me see the beauty in everything! You have helped me tune in and focus on what truly matters. There is a saying I have seen several times all over social media it goes something like, “It’s the really important stuff that never makes it on the “to do” list.”  My to-do list has been drastically rearranged, #1 on my list of things to do – LIVE!!! 

*image from Little Birdie Blessings.

I AM – living in a place of gratitude

I went into the hospital this morning for what should be my final round of tests.  Because I have been living with this medical mystery for a year now, I have been very emotional about it. Finally today I am getting the tests that should give me all the answers I need. I feel relieved and anxious all at the same time. Even though I know who my chief medical attendant is (God)!  I must admit, I am still feeling a certain kind of way that’s very difficult to describe.  I guess it’s to be expected, it has been quite a build up, until now; I have basically been walking around not knowing and today… well in a week or so I will get these test results back and I will finally know.  No more; Ms. Haynes, “we think”, “it might be”, or random drug experiments.  I cannot believe all this started last year! If someone would have told me that I would be minding my own business one minute and riding in an ambulance to the emergency room the next and… that the saga would go on and on for 12 long months,  I would have slapped them in the mouth!  

 

I have been struggling and living in constant chaos and fear, bouncing from Dr. to Dr. and fighting with my health insurance company all while trying to cope with everything that was happening within my body.  I have had to contend with everything from severe vertigo, long nights in the emergency room getting IV medication to treat a migraine that has gone on for several days, partial paralysis, loss of hearing and even blindness just to name a few! I can say, I have been to the edge and back a few times! 

There were times when I was sure I was going to lose my entire mind or die.  There were times when I wanted to die. Somewhere inside of me I found the strength to push through it and kick and fight my way out! It has not been easy; there have been days I could barely get out of my bed.  But I managed to get through.  And every day has been better than the last.   I pray these tests show nothing that can’t be fixed, I pray they show nothing at all! I am mixed with fear, anxiety and relief.  I realize I have come a long way since this all began a year ago and I feel stronger and healthier than ever.  I have even lost weight… but it’s so much bigger than a few pounds on a scale, I have been fighting to get my life back and I feel, finally, like I am winning! No matter what these tests discover, I will continue on this path of taking care of my whole person and cherishing and celebrating every single minute of my life! It’s amazing how much more beautiful everything appears when you have literally experienced what it is like to go blind or, how much movement is cherished after you have lost the ability to do so.  I have had my fair share of pity parties … no I have not yet “arrived”  as a matter of fact, I’m still on the bus on my way there… I may need to make a few transfers but, I am getting there. 

 

Sometimes, I regret not taking better care of myself from the very beginning; maybe I would not have found myself in this position. But ultimately I can’t look back; I must keep my focus forward. I still stand firm in the belief that everything happens for a reason. These challenges I have been faced with have helped me to learn to live in the moment completely.  I think I have always been one foot in the moment and one foot someplace else.  Now, I appreciate every single moment in life, from the moment I open my eyes in the morning to the moment I drift off to sleep at night.  A beautiful change has taken place within me… I want to live a fearless life and I want to love with wild abandon!  I want to be present in the moment. I want to be a participant in life not just part of the audience.  The truth that has been revealed to me living “this” close to the edge, not knowing if I will wake up tomorrow or, if today will be the last day I see my babies smile or look into my husband’s big beautiful brown eyes is; I don’t know what the next moment will bring but, I do know I do not want my last moment to be in a place of regret, sadness, anger or fear.   I receive these challenges I have faced with gratitude.  

I Am …. living in a place of gratitude. 

 

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.  

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… 

Thank you, have a nice day:

The saga continues.. 

At this point its mid November 2011 and I was approved for the MRI!  I have been home or should I say, a prisoner in my own home for a few weeks at this point, in and out of misery, suffering and fearful that something was just horribly wrong with me.  A few days after my MRI, I received a phone call from the internist’s office telling me that the MRI appeared normal… thank you, have a nice day.  No, really the nurse said the MRI is normal… thank you have a nice day!  *shaking my head* That is great news however, I was still falling apart so yay for a normal MRI boo to still feeling like Sh#@!

For some unexplained reason, I went back to my internist!  I explained all the symptoms I was dealing with once again, he did another random exam and determined that he just did not know what was wrong but did conclude that I should see a neurologist for further evaluation… Thank you, have a nice day.