I have heard “There is just nothing we can do” too many times to mention. Most recently in regards to my health. As for my pain, “There is nothing we can do” as for my PTSD “There is nothing we can do” as for my muscle disease “There is nothing we can do” as for my bone disease “There is nothing we can do”. Now that was not prefaced with the “We have already tried EVERYTHING.” And yes, I tried many medications for pain, for PTSD, etc. I tried different modalities of healing: acupuncture, homeopathic, holistic, chinese herbs, you think of it? I have TRIED it! Not only have I tried it but I have had 11 years to sit here in this house and research what the Doctors don’t have time to. Because I just don’t accept “There is nothing we can do.”
When I first found out I had a rare muscle disease and was told there was nothing they could do, it just encouraged me to FIND something to do. I sought out every specialist around the world who specialized in rare diseases. I sent emails, letters, faxes, to every research scientist and doctor in the US, UK, and elsewhere. Because of my perseverance, and not listening to a Doctor’s word as the final answer, I found people interested in my disease. I found a research scientist in Minnesota, one in Canada, one in Florida, and a neurologist in England. Just because one doctor finds you unfixable, does not mean others will not look outside the box and try alternatives. Because of my choice to make these contacts, I was a part of multiple studies and was also studied at the NIH(National Insititue of Health in the US). Now, with all that being said, no answers have been found for me. But as 11 years have passed since I first contacted these doctors, I am still in contact. The neurologist in England thinks of new ideas, bounces them off of other doctors and presented my case at an international conference. I have a Lyme disease doctor constantly trying new things to help me. It just took a long time to find the right doctors.
So currently, there may truly be “nothing we can do” BUT the big difference in being told that and being told what the England doc says and even the Canadian doc still working on my case is this, “Right now, there is nothing we can do, BUT I am not going to give up and will keep searching for answers. As new techniques, new genetic tests become available, I will keep you in mind for them.”
When it comes to health problems of all kinds, even mental health problems, I want there to not be a period at the end of a statement but rather a comma or even a but. Just not a period. Period means no hope. Period means done trying. And where a doctor chooses to put a period, I just move on to another doctor that will put a comma. Because I know, no one really knows why my bones are deteriorating any more than they know why my muscle cells are and I am atrophying, but one day, if they don’t give up during the wait, there will be an answer. Even if the answer only comes during my autopsy, I still consider that a comma. Because if anyone can learn anything from my body that will help others who are suffering from rare diseases, I will take that as a win.
I have to admit I am tired. Tired of having to advocate for myself. Tired of having to remind and question and push for tests and answers to my medical issues. I wish I just remained in the back of the mind of those who can find answers. I’ve got a heavy load with insomnia, muscle pain, bone pain, lyme disease, trigeminal neuralgia, inner ear disorder, and then toss on PTSD and smell sensitivities and chemical sensitivities and holy cow you’ve got a storm! NONE of which I wanted, asked for, or can help. Lyme disease came from a tick. The muscle disease from genetic mutations. Inner ear disorder from the fever I got when I contracted Lyme disease from the tick. Chemical sensitivities from a struggling immune system because of the tick. And well we know where the PTSD came from.
It is a heavy load. So that is why I need a comma. I don’t need a period. I’ve had enough of those in my life to last 20 lifetimes. My muscle disease symptoms started when I was 8 and I didn’t get a doctor to actually believe me until I was 30 years old and finally did a muscle biopsy! I had lyme disease symptoms since I was 18 and was finally tested for lyme disease when I was 40! Persistence. And I know doctors cannot all be miracle workers. I know my case IS rare. I know that my health IS complicated. I just don’t think it is too much to ask for instead of “There is nothing we can do,” to just throw in, ” right now! But I will keep trying.” Open ended. Leaves hope.
I heard, “There is nothing we can do” so many times growing up and facing abuse and the system and the child services and the law enforcement and the lawyers, it is just not a phrase that I take lightly. THERE IS ALWAYS SOMETHING YOU CAN DO. YOU JUST HAVE TO CHOOSE TO!