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

6 Responses to “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 came across your online article. I too have AC (I’m 73 – got hit it when I was 23). My AS is getting worse and I’m trying all kinds of things to deal with the pain. But I have to say, your letter was an inspiration. Thanks

  3. Well don’t know if this site is still active, but hang in there. Everything on earth happens for a reason and God is watching over you. After many years of AS, Psoriatic Arthritis, Fibro and Lord knows what else, it had caused an introspection of what life is truly about. It’s hell I know. You be good now:-)

  4. I have just been diagnosed with AS…I am 51 and I have had problems my while life due to my recent constant pain in my neck spine hips and knees and my constant upper respiratory infections we finally found the answer…AS….I am very worried that this has gone undiagnosed for too long…I remember my first flare up as a child and the doctors first wanted me to see a psychiatrist…I hurt so bad I was in bed for 3 days….then the doctors said I had juvenile arthritis but never treated me….I had what the doctors thought was conjunctivitis 4 times….now I have chronic constipation. ..interstitial cystitis….hearing loss…vertigo….neuropathy of my feet and legs …Gerd…asthma….chronic upper respiratory infections. ….and allergy attacks…asthma and the constant pain…my tongue has swelled for no reason…and my nostrils swelled shut from the fragrance of hand cream…..I am scheduled for my first Rheumatologist appt on 4/15/15….I don’t want to take anymore steroids! What works for you?

  5. I Read your Write Up Here And It’s To The Tee?The Menieres Disease,The Eyes HLA-B27 The Bipolar Disorder. I Feel We will pray Together So Far Away.Right Now Verigo Meds And Special Shots For SI Joint Because Kidneys Are at 49%.Thank You So Much Sharing All It./ Its Hard For Me To Explain.You Explained It All So Perfect. Male/48/Texas

  6. Hi Jen,

    It really sad to hear what you are going through, & unfortunately I’m also suffering (diagnosed) from 90% of all that you are suffering from. Im 38 yrs.
    As I am from that part of the world (India) where we are blessed with lot of natural remedies which is helping me a lot & not to slide to my worse days of suffering.
    A) Yoga exercises :-
    Sit straight, bend your neck vertically down with your chin tucking down (hold it to the count of 10) & then slowly & vertically move it back with you face pushing up looking at the ceiling (again hold for 10 counts). Also repeat the same sideways from left to right & hold it tight at the extremes for 10 counts.
    Do it each of 10 sets.

    After this lay flat on floor (chest side towards the floor) & with your hands pushing your body up & kness & feet glued to the floor like a opposite body curve.

    Start with the above & find out if you feel some relief in 10 days.

    B) There are some natural inflammation fighting herbs that could be in your kitchen like ginger, garlic, turmeric (circumin). Consume it little amounts daily

    Consult some good yoga instructor / physiotherapist in your area.

    And of course the mainstay also consult your doctors regularly & continue with regular treatments

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