Last Monday, at the start of Holy Week, Notre Dame burned. That first day we watched in horror and wondered if all was lost. I cried that day. My heart hurt.

The world watched …People posted photos of their trips to Notre Dame. All the comments on social media I had to do with vacations, this Central, Parisian, iconic building with all the history and art and Kings…

I’m Catholic and felt more than a generic “icon” – but that is not the current angle for my sorrow.

It is this… I have been to Paris and of course Notre Dame twice. First I was 12 (not sick) and then again at 19 as a sophomore in college. Mere months before my first migraine that never went away. We chose to walk everywhere — no metro or cabs — walk — see everything!

So back to my tears… My husband is seven years older than me – he has lived an entire decade ahead of me and was in the Navy. He saw the eastern half of the world all before I graduated high school. Funny how years between adults fade to nothing. Anyway…

We’ve always wanted to travel and check places off that we have been together. Of course all of Europe and Paris are on our list. I mean, come on, my married name is LaFrance. We both love to travel, however, in over 15 years of marriage we haven’t made it too far. Between my health and finances — chicken or the egg? …But my pain levels are not in check. So travel needs time built-in to enjoy and rest – and rest in between the resting.

My heart hurts because my husband has never been and of course all the reports that first day stated he never would.… But what was left standing was the cross and the Piata.

Faith remains.

Hope remains.

Our future is still waiting patiently.

I still have to fight on.

… No answers for my pain. No help… yet….

The Cathedral didn’t vanish and neither have I.

People vowed to rebuild.

I vowed to keep fighting for myself. Keep pushing onward.
I will not say “no“ out of fear of not changing my situation.

Later, during Holy Week, friends arrived for a four day visit. Four days is a very long time to be “OK”….But they know me. They understand and they just let it play out.

I managed two full days wandering, sightseeing and showing them their “must see places” for this first visit to New York City.

Two days! I managed two days! Woot! Woot! 2019-04-17 14.46.22

I needed a rest day. I offered for Paul to go into the city with them or they could take a day and go by themselves… It’s their trip. It’s their choice and I certainly didn’t want to hold them back.

But they knew… They were thankful I made it two days. They prayed that I would have good days (as chronically ill people know — friends have a way of vanishing). They’ve never disappeared. Heck, they’ve never know me healthy… and they don’t care. They are a blessing.

They opted to stay with me and take the car to see all that the Hudson Valley has to offer. We had a great day. Some walking— I really had to limit myself. Then we ended with cocktails and sushi. All-in-all it was a beautiful day and a much needed break.

…One last day. My body was saying “please no“ but I could rally for a short bit. We jumped back on the train and headed for a little shopping, lunch and Central Park. …Just at the edge by Strawberry Fields. The Park was the only site we hadn’t checked off. Now we had! I had! I also made Paul promise not to lead us into the park because that is nothing but walking and then you have a walk out. I knew I had pushed beyond my limit.IMG_5442

They headed to the airport. We took a train home.

PJs and Sofa-City!

Sunday — the first in my lifetime, my birthday fell on Easter. We made it to Mass and then brunch — Sofa-City!

I am tired.
I hurt.
I have no answers.
…Yet.

I will push to do things.
I will rally to not miss out.
I will plan on giving in so I can recover.
… Still trying to get to a better level of recovery.

This is a solid plan so I’m not trapped doing nothing but I’d like some new options. So, I keep searching because this current way is exhausting.

Everyone with Acromegaly has a different set of issues. Some even skate by — it happened and they were treated and they go back to their lives. Sure they get checked every year — a minor inconvenience.

I drew the short straw in this situation but we make the best of it.

What do you do for your symptoms? How do you have a “normal” life?

I’d love to hear from some acro-peeps or anyone else in a chronic illness situation.

Not the type to respond? Keep notes for yourself. Download my link so HealthStorylines App can keep it all in one place for you! Simplifying is always a good plan.

#acromegalyawareness
#HealthStorylines #acromegalyalum #acromegalyacademy
#acromegalywarrior #keepgoing #vivelafranceny #wegohealth #patientworthy

Advertisements