Showing posts with label Migraine. Show all posts
Showing posts with label Migraine. Show all posts

Wednesday, February 20, 2013

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!!! 



Wednesday, August 8, 2012

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.

Monday, August 6, 2012

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!

Wednesday, August 1, 2012

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… 

Monday, July 30, 2012

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.