Rare Disease, Summer Fun and Expectations

Dear Rare Disease Patient,

Whether it’s Primary Immunodeficiency, Myositis, Lupus, MS, RA or any of the delightful chronic disease we find ourselves dealing with – this is a note for all of us.

Here we are getting ready for SUMMER FUN, the 4th of July and some of us have made plans and we really hope to actually carry out those plans.

Will it include a road trip, a boat ride, a picnic, a family outing? Are you sure you’re up to it? And have you planned this well enough and prepared for it slowly so you can rest in-between all of the energy it takes to accomplish this?

Because, if you haven’t – you may end up having to cancel some ( or all) of it. Living up to the expectations we set for ourselves is really frustrating- especially when we end up having to cancel (AGAIN). Have we remembered how to show ourselves the compassion and gentleness we show others?

What if you are alone this holiday? What will you do? Will you read that special book? Make a favorite dish, slip out for ice cream, watch the one movie that you can repeat for the rest of your life? Please show yourself kindness and don’t dwell on being alone – look at it as a way to treat yourself.

What about if you’re feeling well enough to follow through on your plans? Will you be prepared for anything that might go wrong? Have you formulated PLAN B? Sunscreen and lots of water are very important if you find yourself outdoors in the sun. Bug spray. Bandaids. Emergency Dr.

Don’t forget earplugs – those fireworks can be really loud.

By now – we know the drill. We’ve been here before – and we might end up here again. I have to admit – there have been several times when I was packed and walking out the door to catch a flight…

I would walk down the stairs- suitcase in hand- stop in my foyer- re-evaluate- and the next step was I CANCELED my entire trip. I know I let people down- but, damn, I was not feeling well enough to do this. And it’s always so hard to admit ( especially to yourself). But, all I really wanted to do was to go back to bed or take a nap.

I want a NAP

And maybe – all you want or need is a nap too. So take it, sleep heals us – better than meds do sometimes.

If your expectations are





Or anything else that sounds like fun- make that LIST, ask for HELP, take your MEDS, drink that WATER, load that car – rush to the airport – but be PREPARED, be KIND to yourself and in the event you need to – CANCEL those plans and REST. Because we can’t always live up to our expectations. Only we know how we are feeling at the time. Be prepared for Plan B and make the best of it – and if you end up having tons of fun over the holiday – be sure to rest up afterwards.

KNOW THAT YOU ARE NOT ALONE. We are on this journey together.

My plans are very simple- a good book- naps on the deck and lots of iced tea.

Whatever you do – HAPPY 4th of JULY! Or as my Dad used to say:

HOORAY- 4th of July❤️



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