(I just received the Fall 2015 issue of #SpondylitisPLUS published by the Spondylitis Association of America which features the photo Tyler Levanduski took of me one day when I was in a lot of pain. (How It Feels pp. 14-15) The magazine contacted me this summer because they had seen it in one of my Ankylosing Spondylitis support groups & asked my permission to use it in a issue dedicated to pain in Spondylitis. I was honored that it would be used to help & encourage others as well as spread awareness.)
My name is Melissa Levanduski. I have Ankylosing Spondylitis, Rheumatoid Arthritis, and Fibromyalgia, along with a slew of other ailments that fall in line under them.
I live in the southeastern United States. I was born in New England on Thanksgiving, November 22, 1973 right during dinner time 4:55 p.m. As you can imagine we are always surrounded by friends and family for my birthday and I am sure to be blessed with some pumpkin pie. My high school sweetheart, who is also my best friend and I have been married for over 20 years – since July 24, 1993. We have one handsome teenage son who is very sweet, intelligent, and a talented nationally ranked archer.
I had always been an active child and was an athlete (runner, softball, basketball, and bicycling) and model all the way up through my upper 20’s. I was also active in SCUBA until I became pregnant with my son at 27. I had a very rough pregnancy and delivery, nearly losing my son at five months when I became violently ill and again during delivery because my pelvis was unexpectedly fused so he couldn’t engage or pass through. My bladder also pinched off his umbilical cord. Thank heavens for an emergency caesarean section. After the birth of my son I struggled with abdominal pain and back pain. I had numerous issues: adhesions, endometriosis, adenomyosis, and fibroid tumors. I saw my family physician, gynecologist, as well as a chiropractor seeking relief. After another 7 years of pain, physical therapy, and minor surgery my gynecologist/surgeon, husband and I agreed to a hysterectomy after I refused a chemically induced menopause. That relieved most of my abdominal pain but the back pain continued to get worse. I became more fatigued and depressed. During that time I had a hard time getting my general practitioner to believe me regarding my pain. He implied it was all in my head and that I just needed to be more active. I tried, I really did. I gained a lot of weight even though I stayed active. I cut down my daily caloric intake to the point that my body went into starvation mode and refused to burn calories. I was eating under 800 calories a day, walking anywhere from 30-90 minutes a day, working a full time job, working in the yard, cleaning our home, and tending to my family. I now have also sleep apnea and chronic athesmatic bronchitis. Shortly I was misdiagnosed as bi-polar and manic depressive then put on heavy-duty medications that made it difficult to even function because they made me feel like a space cadet. I knew deep in me that although I did feel depressed that it was something more, something different. After a few more years with increasing pain that became so excruciating that at one point I couldn’t get out of bed because the muscles in my back were spasming so intensely and my hips were constantly hurting. My son was so worried he was calling 911 to help me.
I visited my hometown chiropractor, who I saw regularly in my early 20’s, on a trip to New England to visit family. He said he was confident that I had fibromyalgia and something else serious going on in my back and nerves. He told me to demand that my general practitioner refer me to a rheumatologist. Feeling hopeful because someone finally believed me, I did just that. When I saw my rheumatologist I was floored to have a doctor who listened to everything I had to say, reviewed all the paperwork regarding my family history, about recent tendon and ligament issues, easily broken bones which I had never had before, and the slew of medical issues. He took his time. He examined me and diagnosed me with fibromyalgia. After further talk and questions he said he felt fairly confident that he knew what was going on so he sent me for blood work and x-rays to start. At my next visit he informed me that I was HLA-B27 positive, that I have developed Scoliosis, Sacroiliitis, my pelvis is fused and that I have Ankylosing Spondylitis. As heartbreaking as it felt to learn what I had and what my future would look like as this is an incurable disease to which we can only manage the symptoms and the pain, I felt a huge load lifted off of me because someone believed me, I felt relieved that I really had something going on and it was not all in my head like I had been told by others and that most of my health issues could all be lumped under the diagnosis of Ankylosing Spondylitis.
My Ankylosing Spondylitis is progressing fairly quickly causing additional fusing of my intercostal muscles along with inflammation and pain in my neck, back, SI joints, wrists, hands, knees, ankles, and feet. I am also having issues with a low red blood cell count/anemia, low hemoglobin levels, and high liver enzymes.
I pray for relief and remission so I can be more active again. I know I will never be able to run again but I would love to get my athletic body back again, be able to do more without pain with my family, and not be so fatigued and in so much pain all the time. I see my rheumatologist and I get regular blood work ever 8 weeks.
My “baby” sister was tested after I was and she too was diagnosed positive with HLA-B27 and with Ankylosing Spondylitis. It hurts to know my sister shares the same fate.
My biggest fear and heartache by far though comes from being told that because I have an autoimmune disease as does my husband (psoriasis/psoriatic arthritis) that our son has a 75% chance of having an autoimmune disease. I pray fervently that he does not inherit an autoimmune disease from us. He has his own struggles due to a congenital birth defect of having one defective kidney. He has renal dysplasia, kidney hypoplasia, along with hypoglycemia as well as a rapid heartbeat. He also had a traumatic, life-threatening accident when he was four years old that he survived. I believe God has special plans for him and I pray for a hedge of protection around him.
My health history:
Degenerative Disc Disease
High Liver Enzymes
Obstructive Sleep Apnea
Restless Leg Syndrome
Chronic Asthmatic Bronchitis
Chronic UTI, Bladder, & Kidney Infections
Kidney Stone – Calcium Oxalate, 2014, Surgically removed
Hyperkeratosis of the Nipple & Areola, biopsied
Irritable Bowel Syndrome
Hypermobile Joints: Pelvis & Knees
Atrophied Lower Glutes
Atrophied Lower Abdominals
Contracted, Over Developed Back Muscles
Pine, adhesive, poison ivy, spider bites, Neosporin
Surgeries: Cesarean, impacted wisdom teeth removed, molar extractions, hysterectomy, dilation and curettage, laparoscopy, hysteroscopy, donor anterior cruciate ligament reconstruction surgery, median meniscus repair, ureteroscopy with kidney stone removal and ureteric stent placed
Florida, United States of America