A.S. Face 0080: Edwin Menting

Ed

I’m writing this on behalf of my fiance Edwin Menting.

Edwin is thirty years old and found out not more than three years ago that he has AS. It was a difficult time getting to his diagnosis as he was met with several doctors(emergency and otherwise) viewing his complaints of extreme pain as drug-seeking behavior. Upon receiving his diagnosis of AS and lumbar spinal stenosis via an MRI, our past doctor candidly posed me the question:”Now that he has his diagnosis, is he happy?” I couldn’t believe the lack of compassion, in fact the downright venom, in her voice for someone who had just been diagnosed with a serious disease. Needless to say, we didn’t keep that doctor. We switched counties and found an amazing rheumy who listened to his story, believed his pain and offered suggestions to make it better. She put him on Enbrel but also diagnosed him with fibromyalgia thus presenting his need for Lyrica as well. She graciously gave him percoset for his pain without any question only a request that he allow her to closely monitor him for unsafe levels and dependency which we agreed to, appreciating her dedication to making sure he would be fine. For about a year he cycled the Enbrel weekly as prescribed and treated breakthrough pain with the percoset. Shortly after that year was up, the doctor did some tests and pulled his levels only to find out that the Enbrel had done nothing to help his AS. Circa that same time, Ed began to have blackouts where he would wake up and be sick to his stomach. After several ER trips, he was refered to a neurologist who determined he was suffering from temporal lobe seizures. After a prescription of Depakote, he seems to be improving and is now trying out Humira as an option. He seems to be responding well but is experiencing shorter terms of remission. He spends his days drawing, hanging out with friends and caring for our beautiful daughter whom is his best friend!He is a wonderful father and a devoted husband-to-be. I’m proud to have such an amazingly strong person in my life.

My name is Katrina and Edwin Menting is my strength, my love and my Spondy.

Wisconsin United States of America


7 Responses to “A.S. Face 0080: Edwin Menting”

  1. Katrina, Edwin is lucky to have someone so understanding and wonderful in his life. Many spouses dont get it; mine sometimes thinks I am faking it or using it as a way to get out of things i might not want to do. I wish both of you the best of luck and many years of happiness with your daughter!

  2. Katrina, I have AS too.

    Anti-TNF therapy didn’t make any difference to me, inflammations and even iritis (eye-infections) still occurred with Remicade and just the same with Simponi, almost lost an eye the last time.
    Strange how some medications work for most but not everyone.
    So now I’m only left with anti-inflammatory (Meloxicam) and painkillers (Zaldiar), with still a lot of pain.

    When I read about the blackouts, it reminds me of something.
    I almost died 2 years ago in hospital, lost consciousness and stopped breathing because they quickly laid me on my back.
    They didn’t understand how that happened at first, so they did a full heart examination and sleep examination.
    Heart was OK, but they found out that I have very severe sleep apnea, I stop breathing 100 times an hour when I sleep.
    Strangely enough, I’ve never noticed that myself, when I wake up in the morning it’s like I’ve slept very smoothly all through the night, only very hard waking up.
    When start I waking up, it’s like I’m between dream and reality with a dream convincing me that I have something very, very important to complete inside that dream, making me fall asleep again in seconds (and I hate it when that happends). Perhaps that’s also what happens all the time when I stop breathing in my sleep, that my mind has somehow adapted itself to that in this way.

    I’m telling you all this because maybe, just maybe, Edwin could have that too… Sleepapnea can cause other problems when untreated:
    an increased risk of cardiovascular disease, stroke, high blood pressure, arrhythmias, diabetes, and sleep deprived driving accidents.

    BTW: I’m not a doctor, I’m only writing my own experience with something that I’ve recognized. Maybe not the same at all, or maybe very important to let you find out about.

    😉

  3. I am so touched by the obvious love you have for your Edwin! He is so lucky to have you in his life! If only you could educate all families on how to support someone with AS, we would all be better off. Best wishes to you and your family!

  4. Dear Katrina,
    Thank you so much for sharing Edwin’s story with us. One of the things that I find that tears my heart apart, is that many of us do not have the support from family and friends. You are an amazing person.
    Sincerely Cookie

  5. Thank you guys. It seems that most people don’t recognize the intense amount of strength it takes for someone who is in that much pain and discomfort to even get out of bed and dress themselves much less care for others. There are always going to be skeptics and you’ll never be able to convey the magnitude of the situation to them. It’s like being a teenager again, people think you’re crazy but they just don’t have the means to understand you.

    Also, if there is anyone out there who would like to talk to Edwin every now and then, it would be appreciated. He feels very alone in Spondyville.

  6. Thank you for sharing this story for many, many reasons. My personal reason is that right after starting Simponi, i started (and am still having) seizures. The Neuro said she would not dx them as seizures because I am too young (at 36) for that diagnosis. So, I’ll continue seeking answers. I was offered depakote by my psychiatrist for the seizures but the Neuro (who refused to dx me despite a full 24hrs worth of seizures on EEG !) said depakote would make me sicker. Now, I’ll ask my other docs – consider it. Especially if it means I can go back on biologics.

    So you may have given me MY life back. Thank you!!!!

    P.s. So sad many of us are treated as drug seekers. Been there too….

    Holly said this on November 7, 2011 at 3:30 am

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