Creeping Along on my Journey

Do you ever feel like the days are just dragging by? As if the time passing was the slow tick of the second hand on an analog clock low on batteries? Or you yourself are low on power so the time isn’t really the issue so much as you’re running low on power? It can be maddening at times!

As you know I’ve been stuck in a pretty rough flare for a while now. It’s frustrating and easy to get sucked into the defeat I spoke of in my last post. But, I am so lucky in that well timed appointments this week have helped to refocus some of my thinking and put me back into research mode. I’ve mentioned to you before that I am SO unbelievably lucky to have a practitioner who not only understands the multi-faceted set of issues we’re dealing with but is on a mission to learn and grow in new knowledge and research. In one Q&A post on Dr Tania Dempsey’s page both she and Dr Lawrence Afrin, leaders in US research and eduction of Mast Cell Activation Syndrome wrote that, “It must be remembered that awareness of the existence of MCAS is so new that it remains the case at present, a decade after the first case reports of the disease were published, that virtually no physicians are yet aware of it, much less truly have a good understanding of it, and if *you* bore *responsibility* for treating a disease in which you had received no training, then you, too, would probably have qualms about it.  It’s not in any medical school textbooks yet, it’s not in any medical school curricula yet, and even today there are virtually no doctors coming out of any post-graduate training programs who have even heard of it (much less have actual experience with it).  Virtually all of the few doctors who are aware of MCAS have learned about it on their own (i.e., were not *taught* about it) and — quite understandably — have a tenuous understanding of how to even recognize the *possibility* that the patient might have this very complex and highly variable disease, much less how to actually diagnose or treat it.  This poor state of awareness and education will of course improve in the coming decades — the disease is so prevalent that it will have to improve in the coming decades — but for now it has to be accepted by most patients that while they absolutely need a local physician to be their principal partner for dealing with the disease, they should not *expect* to find a local physician who is *already familiar* with it, and therefore what they truly need is a local physician who is willing to learn about it and willing to at least try to help the patient deal with it.  Willing to learn, willing to try.  That’s what the typical MCAS patient should be looking for in the local doctor who’s going to be his/her principal partner for dealing with this.”(Click here for full article)

I love working with her and seeing her because I always feel like I leave with a plan. I’m definitely one who likes planning and feels more equipped to deal with things when a plan is in place. Now, this plan is nothing huge… just a few tweaks to treatment, some tests and follow up appointments soon. But, it’s a plan. Also, within that window she is going to be gaining more knowledge from Dr. Afrin and others and I’m actually excited to see her in 6 weeks time to hear what new info she has and what if anything she thinks we could implement to improve my illness.

I think to some I must sound silly… who is ‘excited’ to see their doctors? HA! I am, especially when they’re looking forward to sharing what they’ve learned from some of the top researchers and pioneers in advancing treatment of MCAS and Dysautonomia among others. We recently had a pre-med student babysit for us so my husband could drive me 2.5h to see my EDS and Dysautonomia specialists and I left her with a stack of research papers I’ve collected on MCAS, Fibromyalgia, EDS and POTS. I probably sounded like a lunatic telling her we NEED the next generation of physicians and medical practitioners to be learning now from the ones developing treatments and accepting the huge undertaking of finding treatments and therapies for these illnesses so a standard for care can be established and one day ALL doctors will be well versed in the diagnosis and treatment of these and other not well understood diseases. Also, Hidradenitis Suppurativa which is considered an orphan disease in the US so virtually no new research is happening and the little that is, isn’t getting enough attention. So while I do MRIs, labs and get hooked up to IVs for fluid I look forward to more information and results that will hopefully keep us creeping along this path… hopefully one day ending in wellness and improved quality of life for all of us battling chronic illness.

I think a hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles.

– Christopher Reeve

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