And Life goes on....

The hustle and bustle of daily activities; work, friends, family. And so it was in that August when I met Al for the first time. He left the day after our dinner date and I really believed that I would never hear from him again. Why would I? We had a nice time, he was fun and interesting…BUT he was an American and what was the point in pursuing something that would never work? At that time in my life I was footloose and fancy free. I had not long come out of a very traumatic relationship and was completely content to have fun and not be tied to anyone. I could even go so far as to say I was a little anti-man at the time.  And so as the year went on and I didn’t hear anything he slipped from my mind. I had given him my information but never expected to ever hear or see him again. Well I was wrong. On Christmas Eve that year my Mum picked up the phone and then called me to say it was Al calling from the USA!! You can imagine I just about fell off my chair.  We exchanged pleasantries and he explained that he had lost my information, but while packing for a trip to Miami to visit his grandmother he had come across the slip of paper with my information on it in his suitcase. I was skeptical but it was nice to hear from him. He wished me a Merry Christmas and told me that he had sent me something in the mail.  Interesting!!! What was it? He told me it was a surprise. He said he would call if he got a chance and if not would it be ok to write to me? Of course…a handsome Cuban American pen pal…why not!

Sometime after Christmas and New Year a card arrived from Al and inside was a very delicate gold bracelet….Wow what a nice surprise. I must have made a good impression at least.  In the coming months I started to receive letters and cards from Al. They were the most beautifully written, romantic, poetical things that I have ever read. I would write back, talking about my life, my insecurities, my doubts and he would write back words of encouragement and love. As time went on the writing between us became more intense and I began to always look forward to receiving them. The letters were also interspersed by phone calls that would sometimes last for hours (back in the 80s there were no international calling plans and poor Al was paying a fortune in phone bills), but nothing could compare with those letters.

I will write more about our romance over the miles, but for now I just wanted to reminisce on how special those communications were from Al and how I miss them. Don’t get me wrong. He still gives me beautiful cards and always writes something lovely inside but there was such an honesty and intensity in those letters that we wrote back then. So much so that I would tell you that I fell in love with him by mail. In this day and age where we all text and email regularly the personal touch of a letter is sorely missed by those of us who remember life pre internet/cell phone era. I encourage each and every one of you to pick up your pens and write your significant other a letter. Valentine’s Day is around the corner and just think what it would mean to them to have something so personal as your thoughts and feelings for them. Go for it…perhaps it will rekindle something forgotten.

Until next time…Blessings

Christmas is coming...Yikes!!

As I sit here writing this blog I wonder how it can only be five more days until Christmas. Have I finished my Christmas shopping? No! Have I put up the decorations? No! Have I even been able to clean the house? Heck no!! Where is my army of elves to help? I don’t know about anyone else but the time between Thanksgiving and Christmas seems to shrink each year and each year I am becoming more and more disorganized.

Every year I swear that next year will be different – that I will put my decorations up early. That all my shopping and wrapping will be done well before Christmas Eve but it never seems to happen. I am beginning to think that I am totally dysfunctional.  Granted, I have a full time job which has me leaving the house at 7:15 and getting home at 5:15 and I make it a priority to go to my kickboxing classes three times a week. Then there is church choir practice on Wednesday nights for a couple of hours (longer now we are practicing for the Christmas Eve service). And somewhere in there I have to do food shopping, have date night with my husband, go to church on Sunday, take my kids to college/work and quite frankly, any time I do have I am overwhelmed and exhausted. Can any of you relate or is it just me?

I know some of you who know me are going to say “Well you have two grown kids living at home. Why are they not helping you?” Honestly, they are hardly ever home and they do help out occasionally especially my daughter. But it is not consistent. I know it is my fault for not being more demanding of my kids. And hubby…well he is sometimes busier than I am.

Having said all that, somehow I always manage to squeak by and get it all done even if it is the eleventh hour.  So I am sitting back today and my mantra is “I WILL get it done and it will all be OK”. No more stressing out…what gets done gets done and what doesn’t …well that’s too bad.  We all get wrapped up in the commercial side of the Holiday season and forget what Christmas is all about.  Jesus is the reason for the season and I look forward to spending quality time with my family and friends and counting all the things I have to be thankful for.

May you all have a very blessed, stress free holiday season and here’s to a much more organized 2012!!

Number Seven....Lucky? Perhaps.

I am not that much into numerology but the number seven seems to pop into my life every so often and usually in very bizarre circumstances.  My actual number using the numerology calculator is six.  So why does seven play such a predominant roll in my life? Well it has actually been the number associated with my near death experiences.  Yes…that’s right; each time seven has been featured I have nearly died (or potentially could have). Let me explain.

It was June of 1961 and I was about to be born. In those days, the technological advances had not been made and there was still risk involved in child birth. My Mum should have been given a C-section but the doctors left her too long and after an excruciating labor she developed a fever and I was delivered by forceps.  As I was pulled into the world, there was no sound, no newborn cry. My Mum tried to grab a nurse to ask what she had had. Nothing; just running and silence.   Time stood still. You see I was born with collapsed lungs. The pressure from the birth and forceps delivery had caused them to collapse. The doctors worked on me for seven minutes, after which time they managed to inflate one lung.  My mum did not even get to hold me and did not see me for three days after I was born as I was placed in isolation in the NICU. A nurse came out to tell my Dad the grim news after my birth.  Lungs collapsed probability of mental retardation, perhaps cerebral palsy. My Dad cried.  My Gran (who was not a particularly religious woman) got down on her knees in her office and prayed with her coworkers. Eventually I was allowed to go home and my parents braced for the worse. Months passed and I grew strong. My Dad worked with me, exercising my tiny arms and legs, talking to me all the while. And then at six months old, my parents were told that there was absolutely nothing wrong with me and that all indications were that I was developing normally and would lead a normal life.  My Mum then had a nervous breakdown!!

Time passed and I started primary school. At seven years old I decided I was old enough to walk to school every day. We lived on the third floor of a flat on the main thoroughfare and there was traffic, but nothing like it is today. Well needless to say my Mum finally relented and let me walk to school.  No sooner had I run down the stairs and opened the door than I saw my friend Susan Innes across the street. Now my parents had always drummed it into me to look both ways when crossing, but what did I do? Well I looked one way but forgot to look the other..oops, bam! I was hit by a car. Luckily the driver had a “feeling” I was going to run out and managed to swerve hitting me only in the mouth and knocking me flying over the other side of the road. If a car was coming the other way, I would not be sitting here today!!  The gentleman stopped and took me up the three flights of stair with my bloody mouth and my two baby incisors hanging by threads to the front door of our flat. My Mum’s face was a picture!! It was all systems go. Off to the hospital, stitches in my lower lip and then to the dentist to have my teeth extracted.  But I was alive!!! It was so funny that I got into trouble for not looking when I crossed the street. I remember the big burly policeman coming to the house and letting me know how much trouble I could have got the man who ran me over into trouble, and then when I went back to school, I had to go and see the Headmaster and he gave me a good talking to as well.  It was a long, long time before I was allowed to walk to school by myself!

OK. Fast forward to March of 2006. I had been scheduled for a D&C and ablation because of severe menstrual problems and the removal of what they thought was a small fibroid. Everything was going well. I arrived at the hospital and was prepped for the op. I remember being wheeled into the operating room and seeing the stirrups hanging from the ceiling. They made me as comfortable as possible…let’s face it, how comfortable can you be with your legs sticking straight up in the air in stirrups? The anesthesiologist put the mask over my face and that was it!! The next thing I knew, I was being turned on my side and Al was saying something about my heart stopping and that they were going to be hooking me up to a heart monitor. I thought I was dreaming. Those of you who have ever been under anesthesia you know that you have a hard time knowing what’s real and what isn’t. So for a while I thought I was dreaming!! But no… I heard a nurse say in the recovery room that my heart had stopped for seven seconds!! Then it went crazy. I was told to breathe, I was flipped, I was hooked up to what felt like a million machines.  Then I was given a room and monitored! I was so scared. How can my heart stop and nobody notice until AFTER the operation? I slept and apparently my heart stopped during the night. I will spare you all the details but basically my heart has an electrical problem which makes it cut out occasionally. This now explained all the years when I would get tunnel vision or completely black out.  My doctors recommended that I have a pacemaker implanted.  So, I have been living with my pacemaker since!! It’s a love/hate relationshipI must say. I love that I haven’t had a dizzy spell or have passed out since but I hate having to go to the doctor and the lump and scar on my chest.  And I AM ALIVE!!! (By the way all the gynocological stuff went fine!)

I cherish each day I have and believe that I have a guardian angel who is guiding me through my life, cradling me and keeping me safe through all these episodes.  I joke with my children that I am now the bionic woman and will be around forever!!  Each day we have is a blessing and we never know when our number (seventy seven?should I be concerned?)  is up!! Maybe it’s all just coincidence, but I think not!!

Until next time. Blessings and may your guardian angels watch over you x

The "L" Word (lupus that is) - Part III The Grim Details

Ok for all of you who are not familiar with Lupus (known also as systemic lupus erythematosus or SLE) here is a brief overview. Lupus is an autoimmune disease, which means that instead of just attacking foreign substances, such as bacteria and viruses, your immune system also turns against healthy tissue. This leads to inflammation and damage to various parts of the body, including the joints, skin, kidneys, heart, lungs, blood vessels and brain.

 Lupus is genetic, primarily affecting women and is more common in women of African heritage, Hispanics and Asians.  In fact 90% of lupus sufferers are women. Lupus is hard to diagnose and is often mistaken for other diseases or illness. In the past some people with SLE were diagnosed as hypochondriacs! Lupus was cited as one of the top 10 misdiagnosed diseases by Readers Digest. There are many theories as to why a person may develop lupus but one of the main theories is that the gene is triggered possible by hormone levels (which may explain why it is so prevalent in women) or perhaps by a virus or (vaccine? My theory).  Here are some of the symptoms and explanation as provided by the Mayo Clinic.

No two cases of lupus are exactly alike. Signs and symptoms may come on suddenly or develop slowly, may be mild or severe, and may be temporary or permanent. Most people with lupus have mild disease characterized by episodes — called flares — when signs and symptoms get worse for a while, then improve or even disappear completely for a time.

The signs and symptoms of lupus that you experience will depend on which body systems are affected by the disease. But, in general, lupus signs and symptoms may include:

• Fatigue
• Fever
• Weight loss or gain
• Joint pain, stiffness and swelling
• Butterfly-shaped rash (malar rash) on the face that covers the cheeks and bridge of the nose
• Skin lesions that appear or worsen with sun exposure
• Mouth sores
• Hair loss (alopecia)
• Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud's phenomenon)
• Shortness of breath
• Chest pain
• Dry eyes
• Easy bruising
• Anxiety
• Depression
• Memory loss

SLE is treatable using immunosuppression, mainly with cyclophosphamide, corticosteroids and other immunosuppressants; there is currently no cure. SLE can be fatal, although with recent medical advances, fatalities are becoming increasingly rare. Survival for people with SLE in the United States, Canada, and Europe has risen to approximately 95% at five years, 90% at 10 years, and 78% at 20 years, and now approaches that of matched controls without lupus.

During my research I also came across an alternate list of criteria which I found to be very revealing. It is as follows:

1. Teenage "growing pains"

2. Teenage migraine

3. Mononucleosis or "Glandular Fever"

4. Severe reaction to insect bites

5. Recurrent miscarriages

6. Septrin (and sulphonomide) allergy

7. Agoraphobia

8. Finger Flexor Tendonitis

9. Premenstrual exacerbations

10. Family history of autoimmune diseases

I marked off a “yes” to many of these symptoms for Patricia. This was scaring me! The more I read the grimmer the prognosis seemed at times.  I had to keep searching for answers. I know this looks like a laundry list of symptoms and medical terms but I am making it my mission to make everyone aware of what Lupus is as so many people don’t know.

My biggest question was why MY daughter had developed the disease. The easy answer would be to blame it on her Hispanic heritage but no one in my husband’s family had ever had anything remotely similar to this.  Unfortunately on the other side of the genetic coin, my family had many instances of auto immune diseases. In my Dad’s family there was the “McLaren Curse”. This happened apparently to the McLaren women who all had what was diagnosed back in the late 19^th and early 20^th century as Rheumatoid Arthritis. But my thought now was, could this have been Lupus and they had not been diagnosed correctly? My first cousin was diagnosed with Crohn’s Disease and another developed severe alopecia - all auto immune diseases.

So it was me, I was the genetic link.  It was my fault that my baby girl was suffering so. The devastation I felt was overwhelming but the guilt would have to wait. I had to be proactive, both for my daughter and for other women who might be out there struggling with the disease.

All I knew was that I didn’t want my daughter to die. Our lives would never be the same again, but this could be God’s way of making us a catalyst in the fight against Lupus. God’s plan is not for us to question but to obey and as our faith is often tested in ways we can’t understand we must stay still, listen and follow.

I thank you all for taking the time to read this blog and to understand its importance. It may not be exciting or funny, full of wit and humor, but it is my wish that it may save a life one day and THAT could mean everything. Blessings to you all…until next time

The "L" Word (Lupus that is) Part II

The holidays came and went and as we moved into 2009 we made several trips back to the emergency room. Patricia at this point had very high levels of yeast, protein and blood in her urine and she was treated for a UTI. She then had a violent reaction to something and came out in a rash all over her body. They thought at first she had scarlet fever but although we were never given a definitive answer, they told us they were sure it was a reaction to the antibiotics she had been given for the UTI.  I was beside myself. Why couldn’t anyone tell us what was wrong with our baby girl?

What do you do as a parent when you think you have asked all the right questions, even given suggestion as to what you may think it is and you still don’t get a solution to the problem? I was at a loss and felt so helpless. As a Mum, all you want to do is take your child’s pain and suffering away and make everything OK again. The frustration I felt at not being able to do that was immense.

It was bad, really bad. Patricia woke up and couldn’t move. All her joints were swollen. She couldn’t close her hands, her knees and ankles hurt and she could hardly walk. Off we went again to the emergency room. This time the emergency room doctor was one of the faculty from NYMC and I knew him. He was concerned enough to have Patricia admitted to the pediatric hospital in Valhalla to conduct some additional tests.  Of course I stayed with her. Doctors came and went. She was taken for a CT Scan, blood tests, on and on. We were there for 4 days. There was a lot of mutterings, musings and thoughts from the doctors, but still nothing firm. One doctor however had mentioned that she wanted to run some very specific tests but the tests would take a while to get back and we would not have a diagnosis straight away.  What did she think it was? She responded by saying that it was highly unlikely but she wanted to rule out Lupus. OK, Lupus? I had heard of it but I had no idea what it was.

Patricia went home, weak and still feeling lousy. She went back to school and put on a brave face. We had received a notification from the school that she was in jeopardy of not being able to graduate in June because of all the absences she had accumulated. Luckily, her assistant principle was very understanding and that issue was resolved. We received a phone call from Dr. Chao’s, office, the pediatric rheumatologist who had ordered the tests and she confirmed our worst fears…”Yes, Patricia has Lupus”.

How can that be? My husband cried. I was in shock. I didn’t really understand what Lupus was. All I knew was what my husband had told me having had a few friends over the years that had had Lupus and believe me, it wasn’t good. 

OK, take a moment and breathe. I am a strong believer that everything happens for a reason even when we are not quite sure as to what the reason is. I had my faith and all I kept saying was that God never gives us more than we can handle. And then it kicked in. I had to protect my daughter any way I could and to me that meant learning everything I could about Lupus. Talking to the doctor was the first order of business and finding out Patricia’s options. At least now we had a diagnosis and we could start from there.  The treatment phase would begin and I would learn things about Lupus, my daughter and myself as we navigated though unknown territory.

Hug your children no matter how old they are and remember life can change in an instant. Until next time, love and blessings to you all.

The “L” Word (Lupus that is) Part 1

It all began in the fall of 2008. My daughter Patricia had always been a very healthy child and apart from several occurrences of strep throat which resulted in her having her tonsils and adenoids removed when she was seven she had been as “healthy as a horse”.  I noticed that she had been complaining a lot about being tired earlier in the year and as I predicted she was diagnosed with Mono. I joked with her, asking who she had been kissing.  School started in September and as in years past Patricia was on the girls’ varsity soccer team. She always played defense as she was one of the taller, stronger athletes. As the weeks went on I saw that she was asking more and more to be taken out the game to rest. Then her glands started to enlarge and her throat hurt. Again we were told it was probably the mono lingering.

At the time of these doctor visits, we were asked to consider giving Patricia the HPV vaccine. I asked a lot of questions and satisfied that the risks were minimal, gave the doctor permission to give Patricia the series of three shots.  The first shot was administered and everything was initially OK, but within a few days Patricia was in a lot of pain and her glands were very swollen. She kept complaining of a pain in her abdomen, so off to the emergency room we went.  After a battery of tests they said her spleen was swollen and that because this is a gland that this was residual from the mono. OK…Doctors know everything right? Life continued as normal, Patricia playing soccer, but being careful not to be hit in the abdomen as we were told that the spleen could rupture, all the things that came along with being a senior in High School.  We went back to the pediatrician who administered shot number two. Within days we were back at the emergency room.  Patricia felt dizzy, extremely fatigued, headaches and general malaise. Again we were sent away with a vague diagnosis, antibiotics and a note to follow up with her pediatrician. Each time we had visited the emergency room, I had also asked if the HPV vaccine could have anything to do with her symptoms and I was always told no, it’s a safe vaccine with very few side effects. 

A few weeks passed and Patricia was still not feeling well. She cried in my arms, feeling so tired at times that it was hard for her to go to school. The night of Halloween that year I had promised the kids that they could have a Halloween Party at the house and my daughter, who loves Halloween so much, put what little energy she had left into organizing the event. We got costumes, props and black lights, the works. The day of the party Patricia looked a little pale but the excitement kept her going. As the day progressed, we noticed a small patch of redness coming up on her chest, but it didn’t look to bad and it didn’t hurt or itch. She was dressing up as Marie Antoinette and covered her rash, face and neck with white makeup. The party was a huge success. During the night, Patricia woke up with a rash and pain in her arm and trunk. As a Mum, I thought it looked like Chicken Pox a little but how could that be. She had had it as a child and although I knew there may be a slight chance of contracting it again I though it highly unlikely.  Off to the emergency room again. Shingles!!! Didn’t only old people get that?

This marked the pattern of even more frequent visits to the emergency room. I even joked that I should get frequent flyer miles because we were there so often. But my heart was breaking as I saw our daughter deteriorate in health and spirit. We would have to find a solution and pray for a miracle.  I prayed like I have never prayed before knowing that God is good and that there had to be  an answer. There was, but was it the answer I wanted to hear? Our journey will continue…until next time love and blessings to you all.

My beautiful Patricia 2009

Poem written when I was in a dark place...

The screaming inside my head will not leave me
When will things be right?
My life is different, Don't believe me?
It's cold and dark as night
People and places pass me by and I see all the smiling faces
But me? The screaming keeps going on and on
The nightmare of my existence cajoles and chases
Taunting and teasing, Oh why am I so forlorn?
On the outside I seem so happy and smile and nod my head
My friends all love and respect me
But what they don't know is that inside my heart is dead
They do not know , they cannot see.