A.S. Face 0216: Jennifer Douglas

My story starts back in 1999.  Up until that point my health had been good with the exception of “normal” sickness.  In May of 1999 I became pregnant for my son Morgan and I started to deal with this illness.  During my pregnancy I developed gall stones and just struggled to get through it until I could deliver in February and have my gall bladder removed.  I dealt with alot of fatigue while pregnant too and thought that it was due to working so many hours, had preeclampsia,  horrible morning sickness that lasted almost all day, and the gall stones.  My job tried to help me by scheduling me to work all mid shifts.  I made it working until 2 days after Christmas and I was so swollen from the preeclampsia and my blood pressure was so high that the doctor put me off work for the two months remaining.  The next couple months flew by and I had Morgan on February 25, 2000.  Soon after I started to notice the pains here and there that I never in my life felt before.  Thought maybe its because I am a new Mom?  Not enough rest and over doing it most of the days.  Six weeks after I had Morgan I had emergency gall bladder surgery and hoped that everything would start falling into place.  I went back to work a couple weeks after and was having some pain in my lower back.  That was different.  Never had pain like that before. And the exhaustion was killing me.  I made an appointment with a new doctor to my area, Dr. Smith.  He was young and very willing to try to get some answers for me. Took blood, had xrays, and a few other things.  SED came back a little elevated, CRP was also. SED was in the 30’s and he said he wasn’t jumping off the chair scared but it did concern him.   I was showing some issues that needed addressed with a Urologist and he referred me to one.  Nothing ever really because of those issues.  We talked about Chronic Fatigue Syndrome and that with a new baby maybe I was suffering from that.  Decided to keep an eye on my labs and take it from there. First time I remember “putting my back out” was when I was shopping in Walmart.  I bent over to get something out of the cart and couldn’t stand back up.  Back to Dr. Smith.  At that point my SED was even higher and he referred me to a Rheumatologist at West Virginia University Hospital.  That appointment was scheduled for 9 months away.  I was having pain in so many different areas of my body at this point that I was in misery.  Nine months?  No way was I going to be able to make it nine months like this.  I asked Dr. Smith if I could look for another Rheumy and try to get an appointment soon.  I began my search and found one that had an office about an hour and fifteen minutes away and a second office about an hour away.  I called and they got me at their Washington, PA office first.  I went to that appointment with the high hopes of getting some answers.  That didn’t happen.  I had labs.  Still running high with the inflammation levels. He put my on Naproxen.  That didn’t help even in the slightest.  He began to see me at his closer Waynesburg office and each time I went with the same complaints and still no answers.  I have to admit I do have some resentment toward this man because why didn’t he find this? Was it because I was a female and he is still in the belief that this is a mans disease?  The next few years were nothing but a blurr with the amount of doctors I saw.  I went to quick cares for help for the pain and for steroids and for time off of work because I just couldn’t do it.  I struggled through it and was working overnights and taking care of a baby during the day.  I think over time this made the disease progress even faster due to not enough rest and stress of being sick all the time. Before I knew it, it was near the end of 2006 and Dr. Smith, the only doctor to really even try to help was leaving his practice and moving out of state.  This left me in the position of trying to find someone that didn’t “think I was crazy”.  In the area I live it is hard to find a doctor taking patients.  I had been hospitalized years before due to what they thought was the flu and they had “given” me a doctor at the hospital.  Little did I know at the time that this man would be a blessing in my life.  I called his office and because he had seen me so many years ago I was considered a patient.  That was a relief.  At the time I was having major swelling in my knees and elbows.  They looked like I had oranges under my skin they were so big.  I called and made an appointment with Dr. Bowles at that time and he got me in right after the Holidays in January of 2007.  He was immediately concerned for me.  He ordered labs and we started with that.  Scheduled me to come back in a couple of days for the results.  They were horrible!  He said to me then that there was a Rheumatologist new to our area that had come from Pittsburgh.  He was faxing my labs to her right then.  By the time I got from his office to my parents house the Rheumatologists office was calling my phone.  Because of how high the labs were and my age she wanted to see me the next morning.  All I could do was cry at that point.  It was a mix of emotions.  Relief.  Fear that I had Lupus because I had an Aunt that had it.  A mix of every emotions including being happy that someone was going to try to help me again.  I saw Dr. Shelly Kafka the next day.  My new Angel.  She sent me for all kinds of xrays and to have a ton of blood work.  Seventeen tubes of blood to be exact.  She even sent me to a Gyno because some STD’s mimic arthritis.  I knew I didn’t have to worry about that but would do anything she asked me to do at that point to rule out what was wrong and maybe what I had.  The next week I went back to see her and she had everything back along with all of my medical records from everywhere I had been.  She told me she knew what was wrong.  I was shocked.  Really?  After 7 years it had come to this doctor finally telling me.  She started to explain what had showed up in my labs with the HLA-B27 positive.  She explained and showed me my xrays and where there was some fusing starting in my lower back. She told me what I had was Ankylosing Spondylitis.  I was scared at first but at that point it all started to come together.  It all made sense then.  I had a leak in my aortic valve.  That fell right in line with the AS.  All the pain and swelling, fatigue and every other symptom was describing AS.  I think at first I was in shock that I had an answer.  She started me on Azulfadine and some pain meds.  I took 2000mgs a day of that for a while then then started Enbrel in January of 2008.  It seemed to work for a while and this past December she took me off of it and I just have started Remicade. Dr. Kafka has become so busy trying to help people that she has added a new Doctor to her group Laura Stavrokis.  She is amazing!  She has helped me so much also.  Does my steriod injections to my joints in my hands and goes out of her way to help people. Its a struggle everyday.  Not going to say it isn’t.  I went off work in March of 2009.  Got a lawyer and applied for my Social Security then.  I finally had a hearing in June of 2011 and was approved for it less then a month later.  Not easy living on Social Security but I feel blessed because so many are still fighting that fight for what they worked for.  So happy to have Medicare because I didn’t have insurance for the last year before it started.  Now my life focuses around my son and trying to be the best Mom I can be.  I won’t let AS take that from me.

Clarksburg, West Virginia United States of America


8 Responses to “A.S. Face 0216: Jennifer Douglas”

  1. Thank you. Your strength is inspiring!

  2. l bet you are a great mum and your sons are proud of thier mum

    Gillian Eames

  3. I am so proud of my daughter, Jennifer. She is a great daughter, wonderful mom to her son and a good partner to the fellow in her life. She is caring and sweet and remains positive. I feel that her attitude will help her in her being able to “live” live with this disease. There is a lot that can be said for being positive in hard times….she is my HERO.

  4. Absolutely inspiring & a beautiful story! Well written too 🙂

  5. Dear Jennifer,
    Thank you so much for sharing your story with us. Amazing and so inspirational you are. I wish you the best always.
    Sincerely Cookie

  6. Jennifer, I can sooo relate to the journey you had to go through before finding a good rheumy. I too, got approved for social security. I hate the fact that I can’t hold a full time job anymore. But am so thankful for having medicare. I was on Humira for a couple years, there would have been no way I could have afforded it if I didn’t have it. Thank you so much for sharing your story. I love what your Mom wrote also. It really helps having family who understand through all this. (((hugs)))

  7. I’ve know Jennifer for years, in fact, we worked together. I’ve seen her struggle with health complications and try to work through them. I’ve seen her have super crumby days and still manage to be the best mommy. Jennifer is a great Advocate for people with invisible illnesses and one of the strongest willed woman I know. I’m luck to call her my friend! to all of you suffering from AS and other invisible illnesses..never give up HOPE and surround yourself with people like Jennifer who remind you that you must not give up! ((HUGS))

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