MS.. the year of my diagnosis, 1990

When I was in high school, my dream was to, someday, become either an English teacher or a writer.  I began junior college immediately after graduating in 1987, taking general courses, but thoroughly enjoying the rhetoric class I took.  My instructor praised my writing skills and was very encouraging and I felt I could follow this path in the long run, but yet I was also lost inside myself as to where my life was going and chose to not continue in my education for the next year or two.

I wish I could explain this to the younger version of me and save myself from years of heartache and pain. 

My parents, along with a close friend of theirs, decided to open a home-town ice cream and popcorn store later the following year, which made the decision to not continue with school a bit easier.  The friend contributed the financial side of the store while my parents did the work, including making all the ice cream and popcorn.  Wow, it was the BEST ice cream I have ever had to this day!  It was called Heartland Ice Cream & Popcorn Factory and it was probably one the cutest, most colorful places anywhere nearby.  I loved working there, had many employees who eventually became friends and many of our patrons became daily visitors.  It was terribly disheartening how our business was not able to stay open nearly as long as we would have liked, largely due to another local ice cream store/company that has been in business for many years.  They have cornered the ice cream market quite nicely and not even Baskin Robbins has been able to stay in town for too long in our area.  It took me many years to be able to stomach their ice cream but I am, once again, a fan of theirs.

During the time my family owned Heartland, we had a huge dry-erase board on one of the walls where I would write the names of the 36 flavors of ice cream we featured.  One evening I was working with a girl named Angie and as I was sweeping the front room of the store, I looked up at the sign and it was completely blank.  I called out to her and asked why she had erased it.  Angie looked at me, giggled and said it had not been erased.  I was confused so I walked up to it and ran one of my fingers across where some of the words should have been, and sure enough.. my fingers had marker on them.  What was going on?  Angie looked thoroughly dumbfounded as I stepped back and still could not see a damn thing on the sign EXCEPT the silver frame that held the white dry-erase board.  I was frightened.  I immediately called my mom, who drove to pick me up that evening, and made an appointment the following day with our family doctor.  This was my first symptom of MS.. Optic Neuritis.

When I was told I had Optic Neuritis, it was simply that and nothing more, although I was sent to a neurologist after seeing the eye doctor.  Over the next few months, I had two more completely separate issues that led to my diagnosis of MS on November 12, 1990.  Although those six months seemed eternal, compared to most, it really wasn't long at all.. but in those six months, I matured far beyond my 21 years.

Studio pic of my Abuelito in his younger days.

Not too long before making the appointment when I received the diagnosis, my mom had booked a flight to go to Bolivia for November 13th.  Her father (my Abuelito) was very ill and was only expected to live another 2 or 3 weeks.  After the news of my having MS, my mother felt very conflicted as to what to do so I knew I had to be strong for her and not let her see me cry, no matter how much I desperately wanted her to not leave me at that moment.  Yet I knew she needed me to "allow" her to go to her mother and be there for her so I kept my feelings to myself and never shared this with her until a few years ago.  I needed to be strong for my mom just as she needed to take on a different role with her own mother as they both cared for my Abuelito as he died before their eyes.  He lived until February 14, 1991, so Mom's trip lasted much longer than we all anticipated but it was necessary and I understood.

In my mom's absence, I was given the roll of manager of our store and it was a huge responsibility for me.  At the same time, I was also dealing with fatigue, numbness, pain and still getting used to the thought of living with MS for the rest of my life.  It was a difficult time, to say the least.  One other thing happened while Mom was gone, too.  We had to put our beloved dog, Tootsie, to sleep, after many years of her health diminishing.  1990 was just a bad year!  But as I always say, life goes on and we have somehow moved on and become stronger within ourselves and as a family.

I hope to hear from you!

During the last few days, I've been experiencing discomfort in my abdomen which somewhat resembles the pain I had one month ago when I began to pass the kidney stone.  My urologist warned me that the pain could begin once again, indicating the stone finally making its way down to my bladder so it can pass out of my body.  It hasn't gotten bad enough for me to take the emergency room doctor prescribed pain medication, but I will take it as soon as I feel the time has come.  And I do hope that moment arrives soon!  It's waiting for the unbearable pain to begin that's making me insane.  I see this doctor again on Friday to find out where the stone is, in case I haven't passed it by that time.  Ugh, such a hassle for such a tiny little stone!

My neurologist's nurse called me this afternoon and informed me that the x-rays taken of my lower back and hips came back relatively normal.  They showed some degeneration in my hips (I believe she said it was mostly in the right hip), but there was nothing significant to show anything in which to be terribly concerned.  My neuro had made some notes suggesting either seeing an orthopedic doctor or having me see a physical therapist once again, and I agreed with the physical therapy.  Being that I am not able to drive at this time, I can have visiting nurses come to my home to help me in this for at least a short time.  Besides, I am sure that some of the pain I am feeling in my mid-section is due to the kidney stone I have yet to pass.  Until it is out of my body, I don't feel pursuing anything too in depth would be the most intelligent decision right now.

Dorraine, my very good friend, was a wonderful help to me today.  As I've mentioned before, cooking has become an impossibility for me in recent weeks so she kindly prepared two batches of macaroni and cheese.  Ah, but I don't make my mac and cheese as most do!  For me, it's an entire meal so it needs to have much more than just the ingredients which are in the familiar blue Kraft Macaroni and Cheese box, as Dorraine soon learned.  I like to pour in a lot of dried onion flakes while the water is reaching a boil so they taste almost as if they're fresh onions when I'm eating my dinner later.  Then, to the cheese mixture, I add quite a bit of Mrs. Dash Southwest Chipotle seasoning (yes, I like it spicy!), a can of tuna AND 6 ounces feta cheese.  Hey, this is a meal, remember?  Then the macaroni with onions is added and voila.. dinner!  I asked Dorraine to have a taste when it was finished and she really loved the flavor and I somehow have the feeling she may prepare this at home sometime and surprise her hubby with this concoction a la Lucy.  Seriously, it's delicious.

Emmi Sue and Dorraine a couple weeks ago at the vet's office

I have been making some new friends on Facebook who have been brightening up my days beautifully as of late.  Some find me inspiring, others think I'm cute or sexy, some think I'm funny as can be.. but all just enjoy messaging or reading the posts on my "wall."  I'm not much of a chatter but prefer to connect with people via emails on Facebook or eventually talking on the phone with a couple of them, but only after getting to know each other well enough that we feel comfortable in doing so.  I'd like to extend an invitation to those who read my blog and use Facebook to feel free to add me as a friend on that site.  I ask that you include a message with the friend request so I know where you saw me, since I do not add people without knowing who they are first.. but since you know me, I would love to have you as my friend.  You can find me at: https://www.facebook.com/wlrios   I do have another profile on Facebook but rarely use it, so please do not try to contact me there.  This is the one I use on a daily basis and I hope to hear from at least some of you. :)

I'm goofy, serious, talk too much.. but I'm always Lucy

When I began my post yesterday, I had no idea I would write about what I did but my thoughts tend to go in different directions most of the time.  I fully intended on dedicating the entire post to my cats but as I wrote, I realized it wouldn't be right to forget about the person who had made such a difference in my life, even though I have rarely spoken of him to anyone.  Magdy has been my little secret, though I'm not sure why that is except that many people do not seem to understand or give as much meaning to love when someone has not physically met him or her in person.  I suppose I did not want to need to explain things and I have left his memory in my mind and deep in my heart but found it absolutely necessary to mention him.

A few years after Magdy passed away, I met a man who has MS but is paralyzed.  I am not sure if he is still alive or not, but I will write this as if he's still living.  He has primary progressive MS and is classified as an MS quadriplegic.  I didn't know what the difference between a "regular" quadriplegic and an MS quad was until he explained it to me.  He was living in a state funded apartment complex for the elderly and those with physical disabilities, so there were a few people there who were quadriplegics.  He asked me to look at their power chairs and the people all had belts around their waists and straps holding their legs in place because their legs would spread open or their feet would slip off the foot pad and they could fall out of their chairs.  He, on the other hand, had nothing holding him to the chair.  His legs were quite rigid and this helped him immensely when he transferred from his chair to the couch or anywhere he needed to transfer.  It was truly amazing to watch him live his life from a power chair and how he had adapted to that life at a young age.  We had been diagnosed around the same age and became paralyzed by his mid 20's.

We dated for about a year and a half, with me living with him and his pesky cat the last year of our relationship.  He was only allowed one pet at the apartment he lived in so my sweet kitties stayed with my parents and this was killing me!  I loved him very much and his MS had gotten much worse so I knew he needed me by his side and my parents understood this.  By the end, I knew it was more than just his body that was paralyzed.  It was his mind that kept him miserable.  I am not down-playing the magnitude of what it must be like to be paralyzed in the least.  It would devastate me beyond what I can even comprehend.  But when you finally have someone in your life who will do pretty much anything to be with you and she wants to take care of all your needs, and you say you love her too, why would you choose your parents over her when they have told you time and time again how much they disapprove of almost everything you have ever done in your life?  It was beyond my comprehension and we finally broke up in the ugliest of ways and it was after that break up when I realized I needed to make changes in my life.

One of the first things I did was change my nickname.  I had been using a different nickname from the age of 20 until that moment, when I was probably 38.  It may sound like a meaningless change, but for me it was anything but insignificant.  Even now that it has been a few years since I changed my name, the only time I think of the other nickname is when I hear Magdy saying my name.  For the most part, however, I have few good memories attached to that name and I was more than happy to let it go.  The girl who had that name had little confidence in herself while Lucy is a much stronger woman who prefers to look forward and go on with her life with only a few occasional glances at the past.

Although I'm happy with the woman I have become and feel sad when I remember the pain I felt inside at the frightened, hurting younger version of the me I was many years ago, everything I have experienced has brought me to this exact point in my life.  I don't believe everything happens for a reason but we do learn things along the way and either fall into deep pits of despair or soar to new heights.  I was in hell far too many times to fear anything anymore yet I also know things can always get worse but I still believe it will get better.  I try not to regret all the stupidities of my past and yes, there were many of those!  But what does regret bring me?  Nothing but guilt and sadness when I cannot change anything that has already happened.

So now I am Lucy and the sky is the limit.  I feel more lighthearted.  More secure in my own skin.  Much more true to who I am.. and it all started with a simple change in my nickname.  Sure, I'm still the same person I was before and maybe I put too much significance in my name but this small change opened up all sorts of new doors for me within myself.  There's a confidence I never I had.  I have a voice I wanted for such a long time and now I feel free to say what's on my mind and it seems as if some are actually willing to listen.  Amazing!

I've had a few relationships since the break up with the "paralyzed guy" but I've also come to terms with my need for independence.  I no longer feel a man has to be in my life in order for it to be complete.  Somewhere along the way, I learned to love myself and realized I'm a pretty interesting person!  My mind is scattered much of the time, I tend to talk too much, I'm silly, kind of goofy, overly serious, but all in all I really like who I've become.  Know what? Time really does heal wounds.

One man and three pretty kitties = a new outlook

Many times, when I spend time with my parents and share my thoughts on life and how far I've come in recent years, I can't help but feel they are amazed at the woman I have become.  I am the first to admit that my life was very unstable from a young age because of my mental state.  I was consumed with anger, self hatred and extreme low self-esteem, yet the outside world saw me as a very mature teenager.  I suppose this was due to my being quiet, keeping to myself most of the time and always respecting my elders, so this was interpreted as maturity.  Damn, were they ever wrong!  Even my parents had me pegged wrong when I was in my teens, or perhaps it was easier for them to see me as "different" from my brothers and leave it as that.

I had a severe case of inferiority complex through my 20's and into my 30's and it affected my life in terrible ways which I will not get into here.. or at least not at this time.  It was absolutely impossible to give and receive love when I felt no love for myself and couldn't comprehend why anyone would want to love me.  Yes, I loved my parents and I tried to love both my husbands but something wasn't right in both those relationships.  I suppose, for the first time, I began to realize that they weren't good enough for me and I began to see a little bit of my own self worth but I still had a long way to go.

After my second divorce in September 2002, I chose not to go out to meet another man and this lasted a few years.  I was already receiving Social Security and really had no need to leave home for anything, aside from going to the store or doctor's appointments, so I spent all my time with my three kitties.  It's amazing how, if we choose to keep our hearts and minds open, we can learn so much from our pets.  I have learned countless things from my cats and I truly wish I could be more like them!  They taught me the true meaning of unconditional love, forgiveness and the importance of a gentle touch and soft spoken word.  I owe so much to my girls but during that time, someone else entered my life who changed it forever.  His name was Magdy.

I used to enter chat rooms on Yahoo and preferred chatting with men over women so when a person named Magdy had messaged me, I automatically assumed it was a woman and this deeply offended him.  In all capital letters, he messaged back something like "NO, I AM A MAN!"  He was from Alexandria, Egypt but living in Kuwait because there was more work in that country.  He was not, however, Muslim.  He was Coptic Christian, a religion I had not heard of until that point, but took it upon myself to do some reading on it to be more informed on the subject.  I won't go into details about him or the relationship we had and he has, unfortunately, passed.  During the time we knew one another, I never had anything but the utmost respect for him and his beliefs.  But knowing Magdy changed things inside me and I am forever indebted to him for this.  I have never "met" anyone like him in my life and wish I had had the chance to hug him at least once but he became too sick for us to meet in Mallorca, Spain, as had been our plan.  I still carry his smile, voice, his very essence in my heart and will never let him go.  I am a better person for having known him and I was fortunate enough to have those two and a half years with the beauty that was Magdy. 

There is a song that makes me cry uncontrollably to this day as it reminds me of him and that song is My Immortal by Evanescence.  Even at a distance, we'd wipe away each other's tears and help one another through all the pain we were dealing with.  Me, with my MS and Magdy, with his heart problems and finally with the prostate cancer that took his life.  He will always be the love of my life for so many reasons and I dedicate these song lyrics to him, as I dedicate the tears I cry to him each time I hear the song.

My Immortal

I'm so tired of being here, suppressed by all my childish fears

And if you have to leave, I wish that you would just leave

Your presence still lingers here and it won't leave me alone

These wounds won't seem to heal, this pain is just too real

There's just too much that time cannot erase

When you cried, I'd wipe away all of your tears

When you'd scream, I'd fight away all of your fears

And I held your hand through all of these years

But you still have all of me.

You used to captivate me by  your resonating light

Now, I'm bound by the life you left behind

Your face still haunts my once pleasant dreams

Your voice it chased away all the sanity in me

These wounds won't seem to heal, this pain is just too real

There's just too much that time cannot erase

When you cried, I'd wipe away all of your tears

When you'd scream, I'd fight away all of your fears

And I held your hand through all of these years

But you still have all of me.

I've tried so hard to tell myself that you're gone

But though you're still with me, I've been alone all along.

http://www.youtube.com/watch?v=A1mPY9z4kvQ&feature=related

After Magdy passed away there was a deep sadness in me but I was able to find strength within myself that I would not have been able to do if it had not been for him and my three little girls.  It was not an easy thing to do and even though almost seven years have gone by since I had him in my life, I think of him often and remember the sweet sound of his voice.. and I smile.  I am the product of my life experiences, good and bad.  I've chosen to take the bad times and make them into positive experiences by learning from them and taking the good times and making them as glorious as humanly possible.