I have always had tremendous respect for the medical community but living with two incurable less recognized conditions, I have had a tough time being believed. Many in the medical profession do not possess the humility to accept the fact that patients with rare or unusual conditions may possess more knowledge of their condition than they do, which often leads the professionals to question the credibility of the patient. Patients often find it difficult to find doctors willing to take the extra time to help, given the pressures that exist in our medical system as it is currently organized. Over the years, I have learned that I don’t have to do all that my treatment providers recommend. No one knows your body better than you. I have had to search for my own network of help and it has taken years to develop that group chooses to make the effort to try to understand my conditions and then buys into Ehlers-Danlos being real and caring to learn with me on how to improve the quality of life by seeking effective treatments which often require accepting novel and unconventional treatments with it.
One motto I have learned to live by is: “If trying something can’t hurt me and might help me, then it is worth considering.” I have gone out on a limb trying prolotherapy, rhizotomy, a jaw brace to stop the jaw from dislocating, surgery with cadaver tendons, for example. I would rather try something new than give into my condition and not search for ways to improve life.
Due to severe osteoporosis, caused by my EDS condition, I have tried so many options to strengthen my bones. I have exercised for years, both swimming and when able, walking. When it appeared, I was beginning to show signs of bone deterioration, I included adding weights to my routine. However, a year later, I learned that it had made no difference. I went from osteopenia to full fledge osteoporosis. It was disheartening to hear. So, based upon the results of a study undertaken by NIH which found the drug Forteo effective in treating osteoporosis I injected this drug into my abdomen nightly for almost eighteen months. The results again were negative - my bones got worse. So on the recommendation of my doctor, I would try Reclast infusions for about five years. And again, no positive changes, year after year. So, we then turned to twice a year Prolia injections. Once again, the results were negative - my bones continued to deteriorate despite exercising almost daily, trying all these medications and eating well. EDS was the culprit. So, when the endocrinologist suggested doing more Prolia, I looked at him and told him, “I am done putting any more medication into this body with no positive results.” He politely listened and didn’t argue with me despite clearly wanting to keep trying to medicate me. He knew the truth too; we had made no positive progress after trying for years.
Sometimes, we get to the point of making decisions to stop treatments. That is our prerogative to make that choice with our bodies. It isn’t that I am giving up, but instead, I have reluctantly accepted that there may not currently be a treatment that is effective in my case, accepting we have tried for years numerous treatments with no success. I had not gone to the appointment prepared to say this to him, but when I heard the same negative results, I realized that was it - I was done putting anything else into this body for the bones. I instead will keep exercising, eat well, try to stay positive and keep my eyes and ears open for something else down the road in case there is a possibility of a new treatment or approach to this condition. And to be honest, it was a freeing feeling to come to this determination. I have also made the decision that if cancer ever hits this body, that the conventional chemical treatments would not be worth it for me personally due to all the reactions I go through with medications. I know to some that may sound like giving up and selfish not to embrace the notion of extending life at any cost, but I would rather have some control left in my life to hold on to. Many patients with my conditions do not do well with treatments and medications, which is where I fit in. I am not able to metabolize aspirin, Tylenol, and any of the opiates for a small window into my extensive list of reactions. I would rather spend my last years without having to face reaction after reaction. We all to have to make those personal choices and try to be at peace with what we decide, to the best of our ability.
May life be kind to you,
Ellen Lenox Smith
Author of: It Hurts Like Hell!: I Live With Pain- And Have a Good Life, Anyway, and My Life as a Service Dog!
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.