My Wife's Continuous AS Journey
After reading what others have shared, the stories of their struggles, and where they are today, I decided that it is my duty, no, my honor to share our story. My Wife, Marlene, has been diagnosed with ankylosing spondylitis as well as RA.
It has been a journey to get where she is today with a lot of extreme emotions, unbearable pain, and complete frustration to get to the point she is at now, hopefully, sharing her journey can assist others in becoming more aware and how to never give up. Marlene is the strongest person I know and have ever known, she never gives up and was determined to get a final, and firm diagnosis, accepting nothing less was never an option.
To get to where Marlene is today, we need to go back and start more than 14 years ago. Marlene had struggled with pain but one day the pain became so extreme that she was not able to move, close, or do anything with her hands. After not knowing what was happening, she proceeded to her family doctor and after many trips there and insisting to be referred elsewhere to understand what was transpiring, she was referred to a Rheumatologist where she was diagnosed with rheumatoid arthritis. This is quite surprising as she was only 26 years old and honestly did not even know what RA was. After being put on a “cocktail” of over 14 different medicines twice daily and regular cortisone injections into her wrist, she was able to function, but the worst was yet to happen.
She was experiencing extreme side effects of prednisone and immediately stopped taking the medicine. Over the next few years, her health was always a concern. Constant sore feet, ankles, wrists, lower back pain, shoulders, etc. This was all chalked up to different things, and never was this all put together to come to a true, complete diagnosis.
The pain had been becoming completely unbearable and once, on a routine trip to her new Family doctor, not even on a visit for herself, the family doctor noticed something was not right with Marlene as she sat there and asked her if she wanted her to take a further look. In doing so she made a quick determination that Marlene had fibromyalgia and referred her to another Rheumatologist. With this diagnosis in hand, she started other treatments and started to also see a Pain Specialist doctor on a regular basis. The issue comes when she was never experiencing “good days” which was not a normal thing for fibro patients, we knew there had to be something else. Marlene had been prescribed so many different medicines to try and assist with the pain management, tried every kind of weekly injections and so much more, nothing was working and by this point the list of medicine, constant tests, and different specialists that she had seen was truly wreaking havoc on her physically but of course mentally as well.
Everyone was missing something and yet no one other, then Marlene knew it. You have to know that Marlene is a gorgeous woman, who from looking at her looks completely perfect, there is a reason AS is called the invisible disease, and it is no truer than in her case. With all this being said, 14 years later, and misdiagnosis with everything from fibro to lupus to Mixed Connected Tissue, it was her research that pointed to AS, knowing she had been positive for the HLA-B27 gene, there was no doubt. After an MRI and some more tests to confirm, she was finally diagnosed in August of 2021 with AS. So 14 years of pain, guilt, thinking that everyone thought she was making this up, compete havoc on her body from wrong treatments and medicines that never helped and in some cases completely made things worst, it was Marlene’s determination to get an answer, and push for a correct diagnosis. She was never going to accept that things are just what they are and live a life in pain and continue trial and error with multiple different medicines that were doing her more harm then good.
Where we are today
So now having a firm diagnosis, a solid, dependable, and knowledgable Medical team, you would think that things are going smoothly now. Well the diagnosis is just the first part, finding the proper medicine, Biologics Medicine, that will assist her has become the next task. Marlene is now on her second type of biologics and still continuing. Marlene has constant pain, fatigue due to the lack of sleep because of her pain and this has been causing her more stress than most of us can ever imagine. My beautiful wife, mother of our three amazing children, is still on her journey, getting the diagnosis was only the beginning. Having all these years stripped from her, having constant pain that impairs you to the point that you are unable to daily tasks is something that cannot even be explained or imagined. The journey continues and as her husband, I try to do any and all I can to support my wife, the love of my life, but 90% of the time there is just nothing I can do to make this pain go away. No one, other than the person experiencing the pain can truly understand what a day in the body of someone with AS feels like. All we can do is be there to support, love and try our best to understand.
The journey continues, what I have learned from my wife’s journey so far is this.
Never give up, if you feel there is something more wrong with you other than what the doctors are telling you, there probably is, no one knows your body more than you.
Never settle on a treatment, if it is not working, insist on something new
Be your own self-advocate, you know yourself best
Never blame yourself, you are not the reason you have this illness, you are not the cause for the diagnosis taking too long to be reached, you are strong
Do your research, know what you are taking, know your doctors, and research your treatments.
And last but not least, know your family loves you, this is so important, knowing you are not alone is one of the biggest factors, you are not alone in your journey
I love my wife very much, I will continue on her journey with her, and in hand. I will support her to never give up and always look for the truth and answers she needs. Like I mentioned earlier, she is the strongest person I have ever known and the true love of my life, we will never give up, and neither should any of you who struggle in trying to find an answer to your pain.
Husband to an amazing AS survivor
How long was your longest flare?