So I recently found out that “I am the FACE of Ankylosing Spondylitis”! As long as I can remember, I have suffered from back pain. I am 50 years old and I can remember back as far as my mid-teens-dealing with pain. I was always very active though so I figured I pulled something or overdid. I worked hard in school, participated in track (I threw the shot-put), marching band (played trombone for over 10 years between school and college) and worked after school. I went to U-MASS Amherst and got my BS in Zoology. I was planning on going to medical school but was hit with a life threatening illness my junior summer of college. I had a pulmonary embolism (PE), a massive blood clot in my lung. It took a long time for the doctors to figure out what was wrong with me so it almost killed me. I was only able to finish my senior year of college with lots of help from family and friends and using the handicap transportation on campus, as my breathing was very compromised. After having your last rights read to you-your priorities change. My then boyfriend and I got engaged and I realized that just graduating was going to be a major accomplishment.
After graduation in 1984, my husband and I got married in November of 1985. We were looking forward to starting a family and got pregnant with our daughter in early 1987. I was thrilled to be pregnant! Even the morning sickness didn’t take away from the amazement of having a human being growing in my belly. After my first OB/GYN appointment, I was informed that due to my history of a PE, I was considered a high risk pregnancy and would need to inject a blood thinner-heparin-subcutaneously for my last trimester. We traveled to Boston for my appointments and I delivered a beautiful, healthy little girl-Brittany in October of that year. Due to an un-planned C-section, I was anticoagulated for an additional 6 months. Two years later, we decided to do it all again. I felt I knew the risks, knew what I had to do with the injections and wanted one more baby. Hopefully a boy this time. I found out early in my pregnancy that he was indeed a boy and was thrilled. I never told a soul. No-one, not even my husband.Benjamin was born in January of 1990. I found a doctor who allowed me to try to deliver vaginally and everything went great! Because I didn’t have a C-section, I was only anticoagulated for 6 weeks. In May, I threw another PE. This time was even scarier because I knew how lucky I was to survive the first one. I also had a 3 year old at home and a new baby who I was nursing. It was only through the help of many that I survived the second PE. In August of that year, I noticed that I was losing a lot of hair, more than after having my first child. I also felt like my hair wasn’t growing. My husband thought I was being silly and no one else seemed to see it but me. As time went on –it became very noticeable. I went and saw some specialist who diagnosed me with telogen effluvium. They felt my hair loss was due to my recent medical crisis and they thought it would grow back as I got stronger and healthier. That was over 23 years ago! I know have alopecia universalis (AU)-the most severe form of alopecia areata. I have no body hair at all. I have learned that AU tends to happen in families with a history of autoimmune disorders. I personally deal with asthma, allergies, eczema, type 2 diabetes and AU. AU also tends to happen after a life threatening illness-which this was my second PE and usually happens when the person is an age divisible by 7. I was almost 28 years old. AU can be hereditary but I have not found any family members in my history who have had alopecia. Male pattern baldness yes-alopecia no.
So, as a completely bald women, I bought wigs. I hate wearing them. I have some lovely ones but the heat really bothers me and even more so with a wig on. I have to draw my eyebrows on each time I wear it and I can easily smudge them off. I really want to have some eyebrows tattooed on but because I still take a daily blood thinner, not many tattoo artists want to touch me. Over the years I have become very comfortable with the fact that I am bald. I wear turbans, wraps and hats. This is who I am and I have always felt-“at least I wasn’t sick”.
So, back to the issue of pain…. Over the past 20 years I have been experiencing more and more pain. Hip pain, crippling buttocks pain, neck pain, shoulder pain, wrist pain, and back pain. I found the pain was worse if I had a long road trip for work as I travel the state a great deal for the MA Department of Public Health. I no longer could sleep for more than a few hours at a time. The pain would wake me up and trying to get out of bed each day was excruciating! I researched online about arthritis because the pain would come and go in certain areas and would be severe at times on different sides. I started with chiropractic care over 20 years ago, then onto various so rthopedists, resulting in several cortisone injections. To get a cortisone injection is a big deal for anyone who takes a blood thinner. I would have to have it done at the hospital and I would have to inject with a different blood thinner twice a day for 5 days prior to the procedure. The injections helped at first but then I got no relief at all from them so I finally hit my breaking point in November of 2012. A dear friend and RN sent me to a pain doctor who has been wonderful. He, like the other doctors thought I had a possible disc issue, my weight could be a contributing factor, and they had found bursitis in my hip joint and arthritis in my lower back. He tried a lumbar injection that was more painful than giving birth. I got no relief at all and even with pain medications, nothing was helping. I finally went into his office in tears in January and told him I just couldn’t live this way. He sent me to a rheumatologist. I saw her that same week and within 5 MINUTES-she told me that she thought I had ANKYLOSING SPONDYLITIS! She told me about the blood test, had my blood draw and scheduled an MRI for the following week. BINGO- positive for HLA-B27 and proof of involvement in my sacroiliac (SI) joint. I than began to research everything I could on line. At least I now had a name for this terrible, debilitating pain. My Rheumy started me on Humira in February. I have fibroid cysts and I needed clearance from my GYN to start the Biologic. I give myself injections at home every two weeks. The first month I didn’t see a difference but month two really gave me hope. My mobility was greatly improved, I was sleeping better, I wasn’t as exhausted and I could actually get on the floor to play with Brody
It is now the middle of July and the pain has been back for over 2 months. Now in addition to the hip and back pain, my neck is affected, my knees kill, my right shoulder hurts all the time and my wrist bone is constantly swollen. My Rheumy feels I haven’t been on the Humira long enough but I am beginning to wonder if I need an injection each week. I have learned so much from this website. I have read every single story-seen every single “Face of AS”. The insight and information that you have all shared has been invaluable to me. To know I am not alone in this fight is very reassuring. I have an appointment with a Boston based Rheumy in August and hope to get a second opinion about my treatment options. I am very curious to find out if there is any connection between my AU and my AS. Since starting my Humira, I have experienced hair growth on top of my head for the first time in 23 years. It isn’t much. Only some peach fuzz but it is there. My kids thought I was crazy cause I kept asking them….”can you see it?” Recently they both said “Mom you got some hair growing”. In my heart I know they are connected. Now that I have been diagnosed with AS it explains the GI bouts I have experienced over the years as well. My Rheumy feels I have been living with AS for over 30 years! My wish would be to find a medication regiment that stops the damage to my joints, enables me to function on a regular basis without agonizing pain and maybe…..just maybe….continue to grow some hair.
If any of you have experienced alopecia I would love to hear from you. I also want to thank Cookie for setting up this fabulous support network. I know you have been having a tough time as of late and please know that you are in my thoughts-as are all of my fellow AS sufferers.
My email is Crowner@Comcast.net and I live in Carver, MA which is near Plymouth and on the way to Cape Cod!
Let’s Kick Some AS~Lisa Crowner
Massachusetts, United States of America