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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.

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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!

Quick Update from Overseas

I’m in Europe, Y’all!

I have been feeling good and have been hopeful that this trip wouldn’t cause my Relapsing Polychondritis to flare up.  So far, so good.

My terrible, horrible, no good, very bad knee has been bothering me for a month so I got cortisone injections before I left home.  The first half of my trip was work and work stressed my knee.  I took a rest day or two between work and running around like a crazy tourist and my knee is nearly fine!  I have walked miles and miles and miles in Paris and London (including many Many MANY stairs) and the worst effect is a mild sunburn where my SPF clothing didn’t cover.  Note to self:  SPF clothes don’t protect what they don’t cover — use sunscreen.

I have another infusion as soon as I get home and then I plan to go public with my illness.  So nothing is happening, really, but much is going on!

Quiet is Good

I’ve been quiet recently, and for good reason — nothing is happening!

My RP has been quiet for nearly a year.  WooHoo!!!!  My fibromyalgia pain is being managed by medication 19 out of 20 days.  I have energy and relatively little pain and generally feel better than I have in years.

I won’t lie — the days the pain breaks through aren’t fun (like today).  The side-effects from my weekly medications aren’t fun.  The infusions are distinctly unpleasant.  Otherwise, my life is pretty darn grand.

Yay me!!!

 

A Two-Fer

Two blog posts in one!

1.  It had to happen sometime.  I had a beautifully pain-free May, but Sunday’s weather did me in.  I have a variety of pain medication for a variety of types of pains and I took one of everything to get through the day.  Fortunately, Monday was better.  I’m slightly bummed that I had a bad day, but mostly grateful that it wasn’t a horrible day/week/month/year.

2.  I had a physical this morning.  I didn’t feel apprehensive about this appointment at all.  I feel better than I have in a few years, I haven’t had any flareups in over 6 months, and I’ve lost over 10 pounds.  So what does the doctor say?  “Your weight is getting up there.”  And then I heard the typical “You’re overweight and need to…” speech.  Um…. I’ve lost weight but I let her go on, because she wouldn’t be doing her job if she didn’t tell me that I should lose weight.  Eventually I had to interrupt, “Considering my size and medical problems, I’m in great shape.”  Reluctantly, she agreed.

Gah.