The pain of waiting

Wow - it's been a long time since my first and only blog post, so I am going to give this another go. I have had a catalyst to bring me back to my blog - yet another possible chronic disease diagnosis...but to tell you about that I have to give just a little history.

10 years ago I was a 35 year old relatively healthy but significantly overweight bedside RN who was experiencing shortness of breath and periods of "graying" out of my vision - which I simply felt was related to my weight.  After about a year of ED visits and doctors office visits with no-one really taken my symptoms seriously as anything other than anxiety, I passed  out one night at work and wound up in the ED with an Internal Medicine MD noticing that something was just not quite right with my EKG (it was the first time in that year of seeking answers that someone had thought to do an EKG).  After four days in the hospital and lots of tests (most of which I was told ahead of time would be normal, and almost all of which were abnormal) I was discharged with a new diagnosis of Dilated Cardiomyopathy and Prolonged QT Syndrome, as well as a shiny new implanted cardio-defibrilator/pacemaker.  I will be writing more about this event from 10 years ago in future blog postings, but right now I want to focus on the catalyst for my re-starting my blog...a new presumptive diagnosis of psoriatric arthritis.

One other piece of information you need to have about me before I get into the topic of the blog is that I have broken my right foot/ankle pretty frequently ever since I was a child - and it is always my right ankle.  In January of this year, I broke my ankle so I was working with the Orthopedic Surgeon on healing and strengthening the ankle.  At my last visit with the Orthopedic Surgeon I mentioned that I have been having pain in both ankles, that the pain predated the most recent break by at least a year, and that the pain is worse in the morning when I get up and gets better with time and with Aleve.  He took X-Rays of both feet and ankles and told me he didn't see any evidence of osteoarthritis, but that the medical history I was relaying would warrant a visit to a Rheumatologist.  

Sooo - I called the Rheumatology office with my referral and lucked out that they had a cancellation for the next day (which was last Thursday) at 7:30 am.  I didn't have enough time to even really get nervous about what he might say at the appointment.  On Thursday morning my husband and I hauled ourselves out the door at 6:30 (thinking traffic would be horrible trying to get across Minneapolis/St Paul at rush hour) and wound up making the trip much quicker than we had expected so we then sat for a half hour before my appointment time.  That half hour in the doctor's office was longer even than the 18 hours that elapsed between setting the appointment and getting to the office (it must have become "real" in my head when I hit the waiting room).

Finally I was called back to the office and talked with the physician who did a physical exam, took my history, drew some blood, and told me that he felt with my history of psoriasis and the exam where he palpated inflammation in my joints he would make a presumptive diagnosis of psoriatric arthritis.  The diagnosis itself would require waiting for the lab results to come back.  In the meantime he prescribed some Prednisone and told me to schedule another appointment in 3 weeks to discuss next steps.  I went out of the office in a little bit of a stunned silence, made my followup appointment for three weeks to the day and left to drop my husband off so I could go to work.  On and off all day I kept watching my new "Patient Portal" for at least some of the test results to be posted (I tend to be a Creeper that way) and tried to focus on work.  

No test results would post for more than a week - even though many of them only take a couple hours to run..so this is the first part of the pain of waiting.  Having to wait three weeks between the presumptive diagnosis and the next discussion with the physician is excruiating.  It has only been a week and I am already going out of my mind with "what-if's" - and I still have two weeks to go!

So, I am stuck in the waiting phase for a little while and what makes it all the more painful is that I am not doing horribly well on the Prednisone (I do have a depression with anxiety disorder and Prednisone is tough on the mood stabilization) so having to remain on Prednisone for another two weeks is going to be a tough road...but let's save that for the next blog topic - "A tough road ahead".  Be watching for the next installation of the saga that is my medical life in the next few days (buhm buhm buhm)!

My Yámana Science & Technology Story

I have always had a passion for science.  Although my choices as an adult have led me in a different direction career wise, I still watch with wonder and amazement all the advances that have been made just within my lifetime.   Now, as I watch my niece Makenna, my nephew Aden and my little cousins Madison and TJ start to explore the world around them, I have seen an interest in the sciences start to blossom in each of them.  I feel privileged that I will always be able to say that I took Makenna to her first science class when she was just 3 years old!

That being said, I worry about their future prospects if they would like to pursue careers in math and/or science.  The career landscape for the research scientist is a difficult one right now, and though there is some discussion about changing that landscape, those discussions are in their infancy.  It is important that we really examine how we “DO” science, and that we all take this opportunity to really consider how we (the global “we”) can advance a culture of innovation in the career landscape for our future scientists. 

For this reason, I am excited to be working with a non-profit organization committed to changing this landscape.   Yámana Science and Technology’s (YST) is a non-profit organization with the mission of supporting this change by providing a forum and a format for open dialogue with ALL of the key stakeholders in the discussion.  There is no easy fix for a system that has been stuck in a “this is how we have always done it” mind set, but by allowing ALL stakeholders a voice in the dialogue we are convinced that the future for young scientists like Makenna, Aden, Madison and TJ is a bright and promising one.

MY CALL TO ACTION FOR ALL THOSE LANDING ON MY NEW BLOG:

Yámana Science and Technology is a rather young organization in the world of 501(c)3 non-profits, and it is important for us to get our message out there as many ways as possible.  I am asking for your support in this mission through one of the below pathways:

·         Leave me a message in the comments section below

·         Go out and learn more about what Yámana is all about and what we are hoping to be able to provide.  Our website is: http://www.yamanascience.org/.

·         If you work in the sciences, or have friends that work in the sciences, tell them about us and the mission of Yámana.  Send them to the website to check it out!