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Published

The Mighty published another one of my articles today.  Read it HERE.

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Welcome, Winter

I have been blessed with 8-9 months of pretty good days, but I’ve always been worried about winter and the return of excruciating pain and other symptoms.

So far, the pain is reasonable but the fatigue…. wow.

I’m having a week of “it takes me 2 hours to get out of bed” days.  This is a huge improvement over every other winter, but is it ok not to like it much?

Never a Bad Day

I never have a bad day, but sometimes the days fall short of “good.”

Some days by body likes to remind me of how awful I felt when my disease was out of control.  Today was one of those days.  The ninjas were attacking non-stop while I was lecturing.  I tried to work through the pain but my students could tell I was in distress.  I gave in and grabbed a chair, sitting through the rest of my lecture.  The students were fine with it and we made it through the rest of the class.

Fortunately these rough patches rarely last longer than 24 hours.  Tonight, though, I’m in my hotel bed with a heating pad by 8pm and praying to wake up in less pain.

Overwhelmed and Humbled

My Relapsing Polychondritis has been quiet for about half a year now.  I’m so grateful and loving living my life.  My biggest problems are the side effects of my medications.  How cool is that?

In the 6 weeks since I posted my video about my disease, about 10K people have viewed it.  I’ve received many positive comments that have warmed my heart.  Recently, though, I was completely overwhelmed by an in-person meeting.  An acquaintance was recently diagnosed with a different disease.  Although the diseases are different, the reality is the same:  we have progressive diseases that impact our quality and length of life.

The overwhelming and humbling part of this story is that she watched my video and told me that it inspired her to know that someone with a serious illness is still leading a productive life, albeit with modifications.  I never meant to inspire anyone; I simply wanted to tell my story.

I kept my story quiet for 5 years.  That’s a long time, but that’s when it finally felt right to tell.  If anyone reading is keeping a story to themselves, I want to add to the chorus of voices letting you know that your story can help others.  When the time is right, share your story.

1Corinthians 1: 3-4
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.

I Miss my Appetite

I’m on a business trip and work is going great.  YAY ME!

Food and I are seriously unhappy with each other right now.  My work requires a great deal of energy so I need to eat.  Sigh.

  • I can normally swallow fizzy drinks, but not this week.
  • I normally can eat PB&J even on my worst days, but no.
  • I enjoy fruit, but that hasn’t worked.
  • Last week, I was able to survive on ice cream.  That was last week.
  • On bad days I can eat mild pizza.  I bought a pizza yesterday and took exactly one bite.

With the time I’m not spending eating, I plan to catch up on my sleep.  Maybe I’ll be able to ingest a few calories tomorrow?

Questions

  1. Is it better to wake my husband up at 4am to fetch my anti-nausea meds or to be sick on the floor whilst crawling to get them myself?
  2. Who can I thank for developing these amazing anti-nausea drugs to counter effects from infusions like mine?
  3. Now that I’m not actively unwell I am hungry, but what do I want to eat?
  4. How many different foods will my husband cook and place in front of me before we find one I can imagine eating?
  5. Since I’m leaving town for work tomorrow, how much packing can I accomplish without lifting my head from my pillow?

So basically, I’m at THAT stage of my treatment.  Since my diseases are calm and medication side effects are my only problems, this feels a lot like complaining.  But then again if I liked being nauseous all of the time, that would be weird, right?

Going Public

So, this happened:

I went public.  And the response has been overwhelmingly positive!

I’m still rather freaked out about what this means and what will happen because of it, but thousands of people have already watched my video so there’s no going back!