About Me

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New York, United States
Young at heart wife, Mommy (Yes my young adults still call me that!)Administrative Assistant, Kickboxer and Zumba fan...

Friday, November 18, 2011

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

Friday, November 11, 2011

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 19th and early 20th 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

Tuesday, November 8, 2011

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.

Friday, November 4, 2011

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

Wednesday, November 2, 2011

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.

Back to the beginning...

The year was 1985, August 3rd to be exact and we were in the prime of our lives. My sister had just celebrated her 21st Birthday and this was the night we were going to "Party Like It's 1999". The heals were on, the make up and hair perfect and off we all went to meet for pre-disco drinks. We did still call them discos back then and not clubs. Fast forward a few hours and we were all very merry by this point and jumping in a taxi we headed for Cinderella Rockerfella Disco in St. Stephen's Street Edinburgh. This had been a haunt of ours for a long time. Prior to the name change it had been called Tiffany's and my girlfriends and I had frequented it since the late 70's. We had danced our way through disco, electronic, pop and new romantic music and loved every minute of it. We were nearly always the first on the dance floor and the last off!!! But I digress. So in we all go and find a booth that was near the dance floor but not too far from the bar. Out came the wallets and the "kitty" was replenished. A couple of us went to the bar and the drinking commenced. We danced, and danced some more...had a few sips of our drinks, had a smoke (yes, as I said in my previous blog, I was a smoker back then) and then headed back onto the dance floor. All of a sudden I hear this deep voice with an American accent asking me to dance. Now back then just someone actually ASKING you to dance was unusual in itself. Normally you got a tap on the shoulder and a jerk of the head. No words were ever exchanged unless they were really interested in you!! So I turn around to see this six feet tall American beefcake standing there. Now you would think the normal reaction would be to say "Yes" but not me. You see back then and in the UK we had a "thing" about Americans. I, of course being the nice person that I am, made up the excuse that my feet were hurting and that I needed to take a break and perhaps I would dance with him later on. Well, now knowing my husband as I do, he stared me down, watched me dance with nearly every other guy in the place and then came back again to ask me to dance. My thought process at this point was that I would never get rid of this guy unless I at least had a dance with him. So we danced and he escorted me back to the table and sat down beside me. Oh no...now I was in trouble, he wasn't leaving. OK, let me talk a little while with this guy who had introduced himself as Al. We chatted and he told me he was in the Navy and that he was stationed at Holy Lock but was on furlough for the weekend. We chatted a while and then the unexpected...he asked me to dinner the next night. What to do? He had already told me he was going back to base on Sunday and then would be leaving for a biking tour in Europe after that. Hey, what the heck. It was someone different to talk to and it wasn't like I was going to see him again...right? So dinner it was...Saturday at Eight. I gave him my phone number and we parted ways. The first thing out of my sister's mouth was "Who was the fat American?" Now my husband back then was almost eighty pounds lighter, but you have to understand I come from a country where most men are on average 5' 7" and weigh around 150lbs soaking wet. So in comparison to the men we were used to he was HUGE!!! I laughed and told her the situation. Free dinner...go for it, and it wasn't like you would see this guy again. After all he was going back to America.....To be continued. Blessings to you all until next time.