A.S. Face 1627: Debbie Pastush
This is my story that I have put off since finding THE FACES OF ANKYLOSING SPONDYLITIS. Why? Because I was diagnosed with AS at 29 after years and years of complaints (which my Mom says started them on the path to Doctors back to age 10 or 11 with all kinds of nonsense except a true diagnosis). I blame the Healthcare System as well as Doctors that weren’t sufficiently knowledgeable of the disease that refuted the diagnosis, stripped me of it and put me into years of humiliation for claiming pain.
In 1989 a wonderful Primary Care doctor new to practice listened to me complain for weeks on end and finely ran the well known HLA-B27 blood test (positive) and from there, did X-Rays followed by a Myelogram that showed Pelvic Inflammation. He explained to my parents and I what he thought I had, a condition called Ankylosing Spondylitis. He did some research and found a clinic in the Atlanta area that specialized in the treatment of those with AS. After a series of tests that expanded three hours, I was told again, I definitely had AS and a plan of treatment was laid out for me. Everything I was hearing was overwhelming and scary and I didn’t know which way to turn but I also found out the clinic was not covered by my insurance. I decided not to return to the clinic so I basically retreated and entered into a state of denial. Back then, there were no support groups or Facebook or any on line help.
In the next couple of years there were different doctors and more tests. One was a Nuclear Bone Scan that showed some inflammation but that was quickly dismissed as having no relevance and with normal ESR or CRP levels, it wasn’t AS (so I was told). Pain continued to the point I could barely walk at times but as I would repeat my story, AS was discounted over and over. I literally begged to see a Rheumatologist but was denied a referral and there was no way of getting around that.
At one point I finally got through to a PCP and was referred to a Rheumatologist but what a nightmare I went through. He gave me the once over, maybe twice but when I didn’t react the way AS was “supposed to behave”, he become intolerant and scolded me for wasting his time and told me to never come back to him. I cried all the way home and swore I would never tell another doctor I had AS. At my PCP follow up, he took the liberty to remove my AS diagnosis from my records (based on the Rheumatologist’s note) indicating I didn’t want something to appear in my records that wasn’t true as it could work against me. I had no clue that I could say no, or why or anything but I learned in the future it did work against me in the way that when I would mention anything about it, it didn’t exist.
For those that say get me records, that was during a time doctors didn’t share them with you and getting a copy was near impossible but once I learned I really needed that evidence, it was years too late as the records were long ago destroyed.
By the 1990s the intense pains were well gone and I became very active in line dancing that seemed to help in so many ways. I was even teaching it and found it so rewarding but I had days that I just didn’t want to show up but always did and once I got started, I felt better. I had restrictions to some things but never questioned why, just avoided them.
For several reasons, I stopped teaching in 1996. A large group that had developed from my days of teaching would meet to go dancing. My Dad suffered terribly from damage caused to RA to his feet, knees and hands but dancing was the one thing that was his outlet and I could never say no to going out with everyone knowing what he was dealing with. I lost my Dad in 2001 and it all came to a stop at that time. He struggled with every step and encouraged me to keep pushing…..that encouragement was gone.
Backtracking, during 1985 and 1986 I was in three car accidents. The 1st was pretty bad and I suffered severe whiplash. I didn’t seek treatment – partly because I thought I was just sore and lack of support that I should. The other accidents were less invasive but I truly believe the 1st is where my issues now started. None were our fault. After I overcame the whiplash my neck hurt now and then but it was just more aching that I would blow off.
By 2005 my right arm was becoming numb but would wane but would return to intolerable pain so after months of testing, I had a distal clavicle resection in 2006 as the Orthopedic Surgery thought my issues were coming from bone spurs on my shoulder. That was the 1st doctor to tell me I was overcome with arthritis in my shoulder and he put on Motrin 800, my 1st anti-inflammatory. The surgery gave me some relief but also was a temporary fix as he said bone spurs often return.
In the next few years more symptoms started to become obvious such as ongoing leg and hip pain, neck pain and the sciatic jabs. I became unable to sit on hard surfaces without it causes debilitating pain or even sitting for long periods without it freezing me up to stand or walk without “warming” up. I would also laugh telling people I could trip over air as I was doing it all too often. Still, nothing was connecting. By 2008 my neck was always hurting and between that, my shoulder, hips and back, etc., I found myself in tears far too often and had to face the fact I couldn’t continue that pace at work any longer. I felt like the pain would ease up if I wasn’t so pressed to perform like I was for such long hours so that was the end of my career.
It did ease and I was offered some part time work from home doing what I had in the past. At first it was fine however the numbness in my right arm was coming back causing me to take more breaks.
My “air tripping” caught up with me in late 2010 when I fell down brick stairs in my garage and tore the tendons away from my left foot. This also is where incidentally they found a heel spur and a fractured talus bone (which explained why that had hurt for so long). A conversation while seeing the Orthopedic Surgeon landed me with a Neurosurgeon. In March of 2011 I had an ACDF at C5-6. The surgeon said the disc had shifted and entrapped the median nerve crushing it from any sensation to my right arm. He was concerned about the amount of damage that appeared to have been done but against the possibilities, I did regain most of that feeling but it hasn’t been right since which ended my dependability of work.
Still at this point, I didn’t see any connection to AS and I was now living in a small community that didn’t have any Specialists that could help me but more than that, I had lost my medical insurance. I applied with eight companies and each denied me coverage. What I found out was Group and Individual Insurance Policies had very different rules.
No insurance = No appointment and total devastation had found me at rock bottom feeling worthless. I had spent years believing if I worked hard and made my job number one (instead of taking care of my health) all would be fine. If I could go back and talk to a younger me, those priorities would be so different but I didn’t know how to be my own advocate.
I did find a County Clinic where a doctor believed me and never questioned the pain I was in so from 2011 until 2014, he was my only care would was more basic than a PCP. Even if I had the clear and undisputed evidence at that point, it wouldn’t have helped me because I still was told no appointment without insurance.
In 2013 I developed terrible pains in my sternum and ribs that affected my ability to breathe fully for over 3 months (I was taking very short breathes). I cried daily as the pain was unbelievable AND scary. Because I had a shorter episode back in 2002 that I was told was pleurisy, I was sure it was the same thing. I discussed it with the doctor during a visit but he really didn’t know.
After continued pain and complaints to the doctor, he said that a regional hospital might be able to work with me to have a MRI. When the order came in it said LUMBAR so I called to say that wasn’t right that it should be the Thoracic. They contacted the doctor who said he knew what he was looking for so without further question, I paid my $1100 discounted fee and had it done. Just what I expected, nothing found.
Finally in January of 2014 I had insurance again and on January 13th I fell in my home and fractured T3-T4-T5-T6, the areas that for three months 7 month earlier had been in daily, breathtaking pain but it took me until 2016 to finally put the two possible associations together.
2014 was finally the year I started to get some answers about my health but not about AS. Right out of the hospital I was sent to a Rheumatologist. In a Back Shell she did the posture manipulations as best possible and then asked me, “Do you feel better at Rest or Being Active?”
I was 6 days out of a traumatic accident that broke my back in 4 places so how would you answer it? Exactly….REST but that was totally the wrong answer as she informed me that anyone with AS would have answered “Active” and clearly I couldn’t have it since I didn’t know that (the way it was asked was AS specific). She quickly escorted me out of the exam room to the Check Out desk with instructions to turn me over to a Pain Clinic (so at least I was thankful for that).
For the next few months I was in and out of every doctor’s office to check off one issue after another but by mid 2014 I realized that I needed to be closer to family as well as a more populated area that offered better medical access so I upped and moved.
My hopes were quickly dashed when I realized the medical plan I had selected in the new state had many doctors refusing to accept the insurance and those that did, the wait list was very long. The one Rheumatologist within 100 miles had an 11 month wait list. As the months passed I become more involved with on line investigation and in support groups that really started to open my eyes to the fallacies and realities of the disease, how many ailments are known to be associated with AS and how the message of these really wasn’t wide spread. Many of my symptoms begin to add up but the home work was far from over because what I knew wasn’t supported by many doctors.
Realizing that by the time I could see the Rheumatologist, I would have another insurance plan, I needed to find a doctor that was on both so decided to go out of network so I reached out to one locally and paid out of pocket. My hips area pain had been chronic for over a year so he ordered a Pelvic MRI which quickly was denied by my insurance company stating there was no medical necessity. In January 2016 we again submitted it through my new insurance which was quickly approved and the findings…..BILATERAL SACROILIAC JOINT EDEMA was in blaring letters on my report. Hallelujah! 30 years later but finally it was right there and undeniable!!
If you are still with me, thank you but know with my story there are so many more that are struggling and tell similar stories. This might be one of the longest stretches but for many, it takes years to receive a diagnosis. It’s not a “Man’s Disease” but some women like myself develop AS in different areas. Genetically, I’m more prone to peripheral areas which may have played a part in my story and delay of recognition. We are all different but all the same. We have AS…..we all need the support and understanding that we may look fine at a glance but inside, so different.
Please learn about Ankylosing Spondylitis by visiting http://www.spondylitis.org/.
South Carolina, United States of America