GIFT OF LIFE

This site is dedicated to ROBIN FAITH F. MEDRANO

BATTLE WITH SLE

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SLE (Systemic Lupus Erythematosus)  – in my own words as I would define it to people who are not so familiar with it, is an autoimmune disease with an unknown cause.  Therefore, all diseases with unknown causes so far are all linked to “STRESS.”

I was diagnosed at the age of 26. It was the year 2002 when I was pregnant with my second daughter Robin Faith. For me, my first symptoms were muscle pain, having that feverish feeling, numbness and tingling of my arms and legs. These were symptoms that I classified as ordinary symptoms of maybe not having enough sleep, working too much without rest, and maybe my first tri-mester pregnancy symptoms.

It wasn’t until my 6th month of pregnancy when my OBGYN took me for an ultrasound and saw that my baby had an enlarged heart.  She asked me if I took pills, antibiotics, or other medications during my first three months of pregnancy.  The only medicine I took that I can remember was paracetamol when I was feeling feverish and I think it was only the first month since I did not know yet that I was pregnant.

I was referred to CUPSI Cebu city, where I had to undergo a 3D Ultrasound to confirm the case of my baby. When I came back to my OBGYN, Dra. Gue, she suspected that it was me who had a problem.  She asked to me to do the ANA test to confirm her suspicion. When the result came, it was positive which means that I had SLE.  She then gave me medications like Prednisone which she says is good for the lungs of the baby.

As a pregnant and sick mom, it bothered me more to think about our future.  How will I be able to take care of them if I am sick?  Is my faith being tested for all that is happening?  So many questions and yet, no one to turn to for real answers.

GIVING BIRTH – I gave birth on August 31, 2002 through Cesarean section and Robin Faith was immediately placed in the incubator. We were advised to immediately provide her with a pacemaker because her heart might not cope since it is enlarged.  As for me, all I was thinking was to be strong for the kids.

TAKING CARE OF ROBIN FAITH & MAIA FRANCES – Numb with my sickness and my C section wound, I managed to take care of a newborn baby and Maia who was 3 years old at that time (with the help of course of our household helper). I was in-charge of Robin’s day-to-day medications, scheduled checkups, vaccinations, and taking care of myself with my own medications. There were times when both of them gets sick and I would rather not go to sleep just to see their chests rising and falling, knowing that they are still breathing. There was just no room for me to think that I was sick.

RETINITIS – another battle that pulled me to the ground. Who would want to lose their vision at 27? March 15, 2004 – got retinitis symptoms and was admitted for a boost of anti-inflammatory drugs that really bloated my physical figure. Feeling like being hit twice by just one stone. I cursed SLE at that time and felt like all the problems in the world was dumped on my shoulders.

OTHER FOLLOWING CASES – Removal of right ovary due to OVARIAN CYST which was as big as an infant’s head (thank God, it was benign) and appendectomy. So therefore, my C-section site was again opened because I just had difficulty in breathing at home and was rushed to the hospital. Robin and Dennis was in the US for Robin’s Pacemaker implant, so only Maia and I were in the house. This was another challenge in my life that always brought me soooo much pain and struggle. As of date (2012), I was last admitted with kidney stones but praying that they have already flushed out and trying to really be healthy for my family.

LUCKY TRIAL – In 2009, I was one of the lucky patients of Dr. Antigua from Chong Hua Hospital to undergo a clinical trial which had a positive effect on us SLE patients and it has been 3 years now that I am undergoing a monthly infusion of Belimumab which is already out in the market and it just happened this year. This was a blessing that I am still enjoying until now. If I would be paying for each infusion, it would cost me P40,000.00 every month, but since I was part of the clinical trial, it was given to me for free although I have to pay for my boat/air fare.

IT’S ALL ABOUT STRESS – It’s already 2012 and having SLE since 2002, and still coping but everything is different now. Losing my daughter in 2006 was so devastating. There will be times when I would just cry by myself, missing her and hugging myself to sleep. I thought in movies it was just a big drama to do it, but wait (God forbid) until you lose someone very dear to you. Looking at someone’s picture was so dramatic to me until I found myself doing it. Life really struck, hit, and mashed me like lightning with all of the challenges that I have faced.

COPING – Me and my hubby Dennis discovered something rewarding regardless of Robin’s loss. We found that helping others have helped us in our healing. The pain of losing a child is unfathomable but in the eyes of the children we have helped, we always see Robin in them. We always felt her presence every time we give gifts and feed needy and sick kids. This was our fulfillment. This was the rewarding feeling that no one can take away from us. I always pray for blessings so that there will be more children and families whose lives we will touch. This may be simple help but we know that Robin up there is happy with what we are doing. Sniff, sniff….. I miss you my little angel…you will always be in my heart… I always pray for strength since Maia is still there to raise and striving to let her experience a happy family life.

THANKING GOD – Prayer has always been my source of strength. Without it, all is gone to waste. It will be so empty and meaningless. Every day, I always pray for Maia’s and Dennis’ protection and health. I always thank the Lord for the wonderful things that he has given us. For the graces that we receive and for a happy family that we are building. Although we are always faced with different challenges in life, we have a Big God who owns the universe and is always on our side. I call on him every day and surprises me with so many things and I love it! Thank you Lord.

STILL – Still on medication, still on monthly infusion, but living day to day is sweeter with my family. Thank you Lord.

I wrote this to share my battle with SLE. I do not know if someone can learn a lesson or two from it, but this is my life and in one way or another, expressing on a blog like this is also therapeutic in a way. I still and will always pray for healing. It’s the miracle that I have been waiting for. God Bless everyone who reads this and my prayers will always be for your success, happiness, fulfilment, good health, love, and blessing from our Almighty God!

Written by CARLA

August 9, 2010 at 1:03 pm

One Response

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  1. I love your blog.. very nice colors & theme. Did you design this website yourself or did you hire someone to do it for you? Plz respond as I’m looking to construct my own blog and would like to know where u got this from. kudos


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