Monthly Archives: March 2017

STUDENT PANEL

This post will lead to more posts coming in the near future and although I have so much to write I will try and keep it simple and to the most exciting details.  I was invited to our local college to meet with 180 medical students, who may or may not end up following a path into Rheumatology but either way they will be in the medical field in some capacity.  I was 1 of 10 patients with an autoimmune disease.  A couple of us were considered rare, a few would have visible clues, a few would be considered more common with or without visible clues.  Each patient sat a table with 9 students. The students could ask us any questions about our situation but could not ask what we had. They could ask for lab results and could do examinations, but they only had 10 minutes.  It was really interesting to hear the questions that they would ask, and also how quickly they were willing to make a diagnosis, but would be wrong.  I was having a rather bad Raynaud’s day so they all looked at my hands and feet and could tell immediately the issue there, but they had to decipher if it was a primary or secondary disease.  Mine is secondary.

The students could ask me what medications I take and when.  I learned very quickly that I only know my medications by their long names and students only know the medication by the generic chemical name.  The obvious one that we all knew by its original name was prednisone. I was able to tell them what the medication was intended for and then let them know that some had made their way into the Rheumatology realm over time.  Such as, Cellcept is actually a medication given to organ transplant patients to help them accept the new organ easier.  That wouldn’t make much sense to a student unless you also knew that it was an immune suppressant.  Plaquenil was first design to help with Malaria but has been used in autoimmune cases since the late 70’s.  There are all kinds of names for calcium blockers but not all calcium blockers are used for high blood pressure.  I was able to educate for a few hours and tell my story in the hopes that these future doctors made good decisions for their complicated future patients.

After a 4 hours and 180 students asked me questions, looked at my hands and feet and made their own diagnosis only 2 students were correct in diagnosing me with MCTD.  Many had never even heard of MCTD and lucky for them the next week’s curriculum was going to be about Lupus, Scleroderma, and MCTD.  Some of the patients’ diseases they were able to come up easily and quickly but they were cautioned to not make a quick decision because some autoimmune look like one thing but are really something else and many times patients get bounced from doctor to doctor trying to come up with the best plan of action when they haven’t even been diagnosed correctly.

The students were told of patient’s stories where they spent years going to different doctors trying to figure it out and spent years and years just taking care of symptoms instead of the root cause disease.  I was able to explain that the Rheumatologist I was sent to spent a lot of time with me and diagnosed me fairly quickly but that it was the years spent after working together to manage the disease.  I also know that I was extremely blessed and this is not the norm for many people suffering from autoimmune but if our future doctors are willing to take a little extra time to get it right then the managing can start a lot sooner which benefits everyone.

It was such a great experience.  I hope to be asked back again and since the next time I will know what to expect I hope that my information will be even more helpful to the students. I did have a few students comment that they were impressed with how well I was able to answer questions and give descriptive information about my pain, condition and side effects of medications.  That I believe comes with practice.

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WINTER BLUES

It has been a rough winter, both physically and emotionally.  I finally got back on the road to health after my encounters with a few flares and now I reside at 40 days without flare-up. A far cry from where I was but I have to meet myself where I am right now. I teach this in all my yoga classes since every time someone walks into the studio they need to climb on their mat as though they are climbing on for the first time without judgement or expectation.  I’m in a place in my health where I need to take my own advice and meet me where I am without judgement or expectation.  What worked for me a year ago or even a few months ago may not be what will work for me going forward.  This is where I start over and re-evaluate my health and my approach.

One of my goals is to go back to basics and work on doing the best I can every day with what my body has to offer. This means a lot of walking again, keeping up my daily yoga practice and teaching, some spinning, very little weight training (only due to the sore in my joints, not because of muscle issues) and eating as healthy as I can.  Here is where I find myself stuck, I know exactly what needs to be done, I have been doing this for 14 years, I give advice to other people about what they could try and yet I find myself in a circle of fatigue and needing convenience. There is a balance and finding the balance is the focus, finding the will and strength to push through long enough to find the balance is the struggle.  This is probably why I have been dealing with flares off and on all winter.  Every time I make some headway my fatigue and body get in my way.

So my first step is to get back outside and walk in the fresh air as much as possible. Obviously the temp has to be high 30’s F or greater for this to happen but believe it or not we have had a several day.  While the rest of the US is looking at spring in a couple of weeks it can be end of April before we really experience spring in Maine so I grab any mild day I can and just bundle up and walk.  My body and soul actually feel great and I find myself smiling each walk I finish.  This doesn’t mean I cannot walk inside it just means I prefer not to.  I’m being tested and just have to take each day as a new day and figure out what I need that day. Sometimes I choose correctly, but sometimes I don’t.  Even after all these years I’m still trying to find the balance that works.