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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 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

5 comments:

  1. As I feel saddened by the trips to the ER, the worry you all must've felt and the hard start of Patricia's diagnosis, I can't help but to be reminded of how we, as mums, should listen to our instincts in regards to our children.

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  2. How true. Thank you so much for your kind words.

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  3. I remember all of the trips you guys made to the emergency room. Through it all you all showed courage and strength. Patricia is a strong and beautiful young lady and we are so happy she and all of you a part of our lives. She is a wonderfully positive influence on my spirited child (you know who LOL!) Thanks for being a great mom (mum :) ) it is because of you she has become a great person.

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  4. It was a nice read but I must ask. Is she okay with you putting out what she has gone through on something as public as the internet? Personally, if my mum posted my story about a serious illness I went through. I'd personally be quite disturbed and even a bit heartbroken. I have no place saying what you can or can not post on the internet especially if it is about the child you gave birth to and raised. However, consider this. You probably shared this to your daughter as one would want as many avid readers as they can get especially if it's a blog. So have you considered that you may have one intention of this post but your daughter may think of this as a story of something along the lines exposing some sort of weakness of hers? Just food for thought. Keep writing as I usually go and procrastinate at work with reading the lives of the "ordinary". -Riven

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  5. Riven...I appreciate your comments and the concern you have for Patricia in me sharing her story. Patricia is well aware of my passion in bringing the under diagnosis of Lupus to light and I would certainly not do anything to hurt her. I can see your point about this exposing a weakness in Patricia but as I continue with the story you will learn that Patricia is an extrodinary young woman who has become my hero. I want her to be a roll model for other girls who are struggling with this disease. My blogs will be mostly be about me, but from time to time I will mention family members as they are a HUGE part of my life. I hope you will continue to follow my journey and find my blogs interesting. Thanks again and have a blessed day.

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