The Long Road...

My name is Debbie Szmyd and I have Systemic Lupus Erythematosus (SLE) and this is my story.   

I’m calling my story “the long road” for a few different reasons – My journey with my health has been a very long and often scary road; My journey with Lupus has had a lot of ups and downs and also many blessings;  And finally, since I am a “glass half full” kind of girl I am looking forward to road ahead of me no matter what it brings. 

First and foremost I have to thank God for being with me and holding my hand every step of the way on this roller coaster of a life. Then I have to say that I am eternally grateful for my daughter and best friend Jess.  She truly has been a lifesaver to me so many times and many days I would not get out of bed if not for her encouragement. I am thankful for a wonderful husband who fought with doctors and hospitals and made sure I was getting the best care possible and I am thankful for the world’s best family and friends who make this journey less scary and they make me smile more often than not. 

Turning 50 this year was a good time to look back and reflect on all that has happened and how I got here and my hope and dreams for the future.  So with much encouragement from Jess (my rock!), here is my story…

Once upon a time there was this princess…No wait… that’s Cinderella’s story not mine.  Hehe

Anyway… I know it’s a little long winded but to truly get to know me and why my brain works the way it does, you need to know my life before my lupus diagnosis. 

Growing up a twin is a pretty cool thing but as a kid it would break my heart and be so hard for me to understand why my brother was so sick with allergies and asthma and I wasn’t.  How can one twin have all these issues and the other not?  He eventually outgrew most of the issues with both and life was good and now he’s well and I’m not.  Somewhere in my thirties I started having terrible problems with infections in my body – sinus infections, eye infections, and infections in my teeth constantly and kidney stones and high blood pressure too.  This went on for years.

On May 9th, 2003 my life changed forever.  I took my mom to the hospital for her gall bladder surgery.  I got her all checked in and when they took her in, I checked myself into the emergency room for another bout of kidney stones and life as I knew it was no more.  After a bunch of tests the doctors told me that I did have kidney stones again and was also pregnant and had a watermelon sized fibroid tumor in my uterus.  My OB/GYN said the baby would not survive and the best I could hope for was an early miscarriage.  As you can imagine, I was traumatized, mad at God and questioning why me?  I did have a miscarriage with a lot of complications.

I hemorrhaged profusely.  There was blood everywhere – so much so that the emergency room doctor was freaking out.  My blood would not clot.  That night I was placed in Intensive Care with a less than good prognosis.  I don’t remember too much of the next day.  I do remember how awful I felt that I was putting my daughter thru this.  Early the next morning my husband, mom, and Jess were called in to say goodbye.  My kidneys had shut down and the doctor said the rest of my organs would probably do the same.  Everybody was crying but I didn’t know why.  Nobody told me I was expected to close my eyes and die.

Later that day, I was rushed to a different hospital – one that specialized in kidney issues and put in intensive care.  I spent a month there fighting to get better but being prepared that I would have to be put on a transplant list. I had a wonderful team of doctors and nurses taking care of me and acting like my cheerleaders every time my bloodwork came back.  It broke my heart to see the fear and pain in my daughter’s eyes.  She was so young and had to worry that I would die.  I would get so excited every time she came in that I vomited every single time I saw her so she became afraid to come see me for fear she was making me sicker.  I honestly didn’t know how dire the situation was until my Mom brought a lawyer to the hospital to do my will. Then it hit me. 

I made up my mind that I was not going to leave my child motherless.  I’ve always had faith in God but began, as most people do, praying my heart out.  I talked to God all day long every day and made all kinds of promises.  My friends and family and my whole church was praying for me.  God heard us because very, very slowly I started to get better.    I had 6 blood tranfusions to help with the massive blood loss and began having kidney dialysis.  I pretty much spent most of that summer in various hospitals constantly fighting to get better.  (Believe me, I could write a book about everything that happened to me just in the hospitals.)

Finally I was well enough to go home and continue with dialysis on an out-patient basis.  My body had to heal from the trauma that it went thru the last couple months and then a few months down the road I would go back to Philly for a hysterectomy to remove the fibroid. Life was getting better.  God had heard my prayers.

I get settled in at home where my daughter had to become the Mom and take care of me.  This shouldn’t happen this way.  It was so much for her to deal with and she would cry that she wanted me back the way I used to be.  I felt so much guilt for getting sick and putting her through this.  I could not stand up without wanting to pass out so she really had to do it all.

A few weeks later I kept having trouble with my dialysis catheter.  It kept getting clogged and wouldn’t work.  My Nephrologist ran some tests and my kidney function and blood numbers had improved so much that the catheter could be removed and I wouldn’t need dialysis any longer.  He removed the catheter and sent me on my way.  What a good feeling – kidneys were functioning enough to get by and I was slowly becoming Mom again.

Then I got a blood clot in my neck and shoulder and was back in the hospital for another week.  Turns out that was why my catheter stopped working.  In a few months I went from my blood being too thin and almost bleeding to death to having a clot and having to take blood thinners.  The clot dissolved and I was finally well enough to travel back to Philly for the hysterectomy.  Surgery went well and I was back home and doing much better.  The never ending year was finally coming to a close and I was still thanking God for giving me another chance.  As I got stronger so did my faith. 

After while I came across the journal my husband had kept of everything that happened to me that year and the depth of what I had been through and I believe with all my heart that it is a true miracle that I am here and just celebrated by 50th birthday when I came so close to not reaching 40. 

That being said, life has certainly not been easy since then – the kidney failure left me with weak kidneys and Stage 3 kidney disease so I have to be very careful and take good care of myself.  I do not drink alcohol except for maybe 2 glasses of wine a year and I research everything to do with my health that could harm my kidneys.  I have a ton of blood work done to keep an eye on them.  I know what all the numbers mean and I carry a copy with me.  My kidney health is on my mind 24/7/365 because I will do what I have to do to keep them functioning.

The next nine years were a constant battle with health issues – so much so that I referred to myself at the “Murphy’s Law of Medicine”.  I developed acute Carpel Tunnel Syndrome in both wrists practically overnight.  I was in constant horrible pain until I went to an Orthopedic doctor and had surgery on each wrist over a 2 year timeframe.  I had constant sinus infections and had to have Sinus surgery.  The tooth infections kept coming and I had to see an Endodontist to re-do all the work I had previously done and to have oral surgery to remove a cyst from my cheek.  Then Christmas night 2008, I had bronchitis again and coughed so hard I almost passed out.  Luckily I did not but unluckily I felt something pop/tear and had to have hernia surgery.  It was never ending and very frustrating.  So now I have a general doctor, a nephrologist for the kidneys, and orthopedic doctor for my wrists, a dental specialist for my mouth, an Otolaryngologist for my sinuses, and a surgeon for my abdomen.  I could barely have 3 straight weeks without a doctor’s appointment.  But after surviving 2003, I learned to roll with the punches.  I developed a high tolerance for pain, kept up with all my appointments, and had faith that I wasn’t alone and I was going to be just fine.  Jess spent a lot of time angry that everything kept going wrong for me and I had to spend so much time suffering and needed surgery every year.   She just wanted a normal Mom.  I kept telling her that I would much rather be the one sick than any of my loved ones because I can handle being sick but I couldn’t handle them being sick.  But the question that was always on my mind was “why”.  Not why me but why is so much going wrong?

Eventually things calmed down and seemed to be fairly normal for a little while.  Then I started being absolutely exhausted all of the time and my body started to hurt more and more and more.  I could not set the dinner table because I could not pick up two plates at a time.  I could not lift a full cup of coffee to my lips.  I learned to deal with it and put off doing anything about it until the pain became unbearable.  I went to my regular doctor to be tested for Lymes Disease.  The blood work came back showing I tested positive for Anti-nuclear antibodies and it appeared to be systemic.  I needed to see a Rheumatologist immediately.

And so begins the next chapter…my journey down Lupus lane…