A.S. Face 0105: Jen Smith

We all come from different walks of life. Ankylosing Spondylitis doesnt care what origin or what age you are. It simply enters the body and takes full control. All of us have a story to tell and here is mine.
I am a 38 year old wife & mother. Ive been married to my husband for 11 years now. We have a precious son together named Tyler, he is our world.
My AS went undiagnosed for 12 years. I first showed symptoms of iritis in my left eye when I was 12. I can remember the redness, the pain and sensitive to light. I remember other kids teasing me because my eye caused me to be “different”. I didnt know the cause of it, the doctor didnt even have a name for it. I had years of flare ups, steroid & dilating drops. Starting in 1986 to 1997 it was just treated, nothing else was done. But I also had dizzy spells starting around the same age. I lived in Baltimore at the time and was sent for several and I mean tons of tests at Johns Hopkins to find out what was causing vertigo. After testing I was diagnosed with Menieres Disease in my left ear (causes vertigo, nausea and hearing loss). While doing some blood work at Johns Hopkins, the doctor noticed my Sed Rate was elevated. I was then sent to a Rheuamatologist.
The Rheumatologist ordered blood work and x-rays. It came back with a positive HLA-B27 and with other tests I was then given a diagnosis. After years of pain and suffering I was diagnosed with Ankylosing Spondylitis. I had chronic bowel inflammation for many years and  with the iritis & back pain that started in high school the doctor figured that in with the diagnosis. She sent me to a gastroenterologist where I had a colonoscopy. During 1998 and 1999 there was a lot more testing. I remember taking many oral medications to calm the inflammation, many would be recalled later on.

The iritis eventually went to my right eye. Glaucoma was later diagnosed in both eyes (the dr felt it was caused from all the years of steroid drops, causes pressure to increase). I have been diagnosed with:
~ Ankylosing Spondylitis
~ Crohn’s
~ Fibromyalgia
~ Menieres
~ Uveitis (both eyes)
~ Glaucoma (both eyes)
~ Iinflammatory Bowel Disease
~ Migraines
~ Asthma
~ Bi-Polar Disorder
~ Severe Anxiety Attacks/ Panic Attacks
~ Chronic Fatigue
* Had Endometriosis and Polycystic Ovarian Disease til I had full hysterectomy in 2006
It has not been an easy road. This takes us to my next chapter in my life. My husband, who was an auto mechanic for many years, joined the US Army in 2007 after our health benefits kept being cut and costing more. We couldnt afford the medical bills and prescriptions. He also wanted to serve his country just didnt think he’d be joining the Army at age 35. We didnt have much choice though with all my health problems. Being an Army Wife has many challenges and being away from family has been very hard. Im from Maryland and we have been stationed in WA state since 2007. My husband has also served 2 tours in Iraq. I cannot put into words the stress this has caused, the flare-ups, the chronic pain and so many sleepless nights. When we first got to WA in 2007, he was deployed a month later. It was the hardest thing I have ever endored to say good-bye to my husband for a year, live 3,000 miles away from home and it just be my son & I. I was absolutely terrified. I had to be the strongest I ever was. I knew after that deployment I would not go through another one without family.
So come Sept 2009 when he was deployed again, Tyler & I moved home. Well, we learned a lot from the move because unfortunately the Army doesnt help with “voluntary” moves. And after being misquoted by the movers the whole move (WA to MD, MD back to WA) ended up costing around $10,000. We had to sell my husbands truck & a lot of our belongings to lighten the load to move back to WA in August 2010 before he returned from Iraq. But it still cost a ton. Im telling you this because having AS and all the other conditions affect everyday life and being an Army Wife it affects the everyday stress that goes along with my husband serving his country.
I hurt, everyday. I ache, everyday. AS for me consists of: iritis in both eyes, severe back pain/ stiffness, neck pain/ stiffness, migraines, knee pain, heart palpations, stomach cramps & running to the bathroom after eating, chronic fatigue, so much pain in my sacroiliac joints that I cannot walk, sit or stand for long at all, swollen joints, shortness of breath, anemia, weakened immune system that causes frequent colds & flus and an overall ache that affects my back & legs the worst. Its not easy but I do the very best I can because I have no other choice. We have no control the cards we are dealt in this life.
A while back while tucking my son into bed. Tyler said, “Mommy, if it wasnt for me, where would you be because of all your illnesses? Would you be up there (pointing to heaven)? I replied, “Well, I dont think so hunny, why?” He said, “Because you always say im what keeps you going.”  This hit me hard. He sees my pain everyday and his big heart just breaks for mommy. I feel so bad for him but there is no hiding when I hurt. He is 10 and fully aware that I suffer. I have always said I can handle this, Lord, but please let my son stay healthy.
Recently, I had a severe allergic reaction to a medication and had to go to the hospital by ambulance. I pulled through and am okay but what a scare. It was a very severe reaction. The morning after it happened, I woke up to find my son sleeping on the couch. This was very unusual as he always sleeps in his bed. When he woke up, I asked him why he was sleeping there. He told me, “In case the angels come, Mommy. If the angels come to take you I wont let them.”  This was so heartbreaking to hear. My son and I are so close and I honestly dont know how one of us would go on without the other.

My husband worries so much, too. Especially with being away so much training and deployments. My dream? I have two of them before this disease takes full control. I would give anything to take our son to Disney World while I can. Also, I love the beach, have since the first time I laid eyes on it as a child and it took my breath away.  I want to see turquoise water, Hawaii or the Caribbean. Ive never been to that kind of beach. My dream is to do these two things with my family before im not able to. It would take a miracle because we do not have the money to do this. But I never stop dreaming.

I feel like a burden now I cant imagine if I become completely disabled. The doctor is concerned that my ribs are fusing and has warned me about the risks to my heart from AS. Ankylosing Spondylitis is very serious and there needs to be more support for us that suffer.

Thank you
Jen Smith

Washington State United States of America

4 Responses to “A.S. Face 0105: Jen Smith”

  1. Dear Jen,

    Thank you so much for sharing your story with us. I, too struggle with the feelings of being a burden, and had many hardships. Remember to be kind to your self as you would someone you love. We sometimes put more on us than we would ever do to someone we love. I understand the pain of bringing illness to youngsters,being sick, my daughter is ill and my grandson, has been difficult but it makes them grow up to be compassionate and loving people who can handle the world.
    Sincerely Cookie

  2. Just remember your son will be a better person for having gone through all tis with you. He will understand when he’s older everything you went through to be the best mom you could be. Even though it’s hard, keep postive thoughts and attitude. Even on a bad day you know there will always be a good or at least an okay day. Both of my kids have done a science project on AS and it has helped them understand a little more.

  3. Thank you for telling us your story. It is so harrowing to read what some people have to go through, however, on the positive (some times we have to search hard for them) Is the fact that you do realise how strong you are. You have a loving family, and they will never consider you a burden. We are all to good and practiced in being kind to everyone else but not ourselves. **hugs**

  4. Jen, I hear your precious heart. Your son is a blessing. I pray you write back and let me know how you are doing. That maybe you have had the opportunity to go to one of these two places and smile and see your son smile. Do you have fusion in other places besides your doctor wondering about your ribs. If there is some way I can help. I moved 1500 miles away from my whole family when I got married and now diagnosed last week after 14 years of back pain. A couple things have helped me…
    Thinking of you.

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