Thursday, March 28, 2019

Not curable but treatable - It's better than I hoped. Detail Heavy post - alert, alert!

Hi All,

Growing up, I accepted things as normal - moving at least two times a year, playing sports on all boys teams, etc. When it came to my health, I figured that I must be normal, but it is nothing I really discussed with my parents or asked friends. Health issues just were not discussed and, having three brothers, I did my best to fit in and not show much emotion.

I had been on medications for acne starting in 1998-2003. I stopped all medication in Summer 2013, because I was having constant migraines and later I discovered I get them from citric acid. My body loves to react. You might say - in fact - that it takes great pride in having reaction. Transitioning off the medication was tough but I got through it and life was fine until 2009. I was in a job and things were not going as I hoped. Within a few months, I would leave and take job in a remote area for 15 months. The pain continued and - being used to dealing with symptoms - I only noted it was getting worse. Fast forward a few years, the pain is continuing to get worse and I am now in a position with insurance. I checked with my doctor, who wrote it off as being "normal."

I have a very high pain tolerance. Once doctors figure this out, they being to realize I only appear in the office when it is serious or I am threatened by people, who I know will keep pushing until I go (Hi Mutti! :). So here we are in late November or early December of 2012, the pain is so severe that I take medical leave and head straight to the doctor. I could not get an appointment, but I saw a nurse practitioner, who had me rush over and get some ultrasounds. I got my first unpleasant diagnosis and three months later I had laparoscopic surgery.

The recovery was awful and within a few months the pain and symptoms reappeared. I was quite upset and, after seeing a new doctor, got on medication again. During this time, I had horrible allergies, bronchitis, pneumonia, and got really out of shape but the pain was not present!

In July 2017, I was in a new location with a new doctor and I mentioned the frequency of migraines with no apparent triggers and these migraines did not go away. It got bad enough that I quit taking the medication a few weeks prior to seeing a specialist in January of 2017. I went through a battery of tests and they discovered I was anemic. I sure wish they had checked my blood levels first but that is life. By May 2017, I began taking high doses of iron, which seemed to improve all the issues, until August 2018. To catch up, click here.

Monday - I felt good and explored a nearby park, where I am coordinating an event in a few weeks. The 2 mile run was slow but steady and yes I could tell that I have not been running consistently. Below is post-run park picture:

On Tuesday, I met with a doctor, who I trust. I was a bit unsure, but I received only kindness, thorough questions, and lots of drawing and explanations. It turns out that we think I have an incurable but treatable disorder. As we work to figure the best way to tackle things, the next few months will be a series of experiments and, of course, more ultrasounds.

I am deliberately keeping the diagnosis vague, but know that it is not curable. If at some point I had children, it could potentially get better but it could also be challenging to become pregnant. You see - it is different with every person.

I am hoping to be in decent enough fitness and health to do a 10k on June 9th. If I do, my biggest goal will be to smile, wave, and just enjoy being able to run health. To all those who have sent best wishes, support, and cheery notes; thank you - I appreciate it more than I can possibly say and I did my best to respond to each one.  If you would like more specifics, please contact me directly.

I just might try rock climbing and running on the same day this weekend - AAGH! Yep, I am definitely feeling better.

Happy Friday!!

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