What To Do?

I wish I knew the answers to some of these ever elusive questions. Truly.

What should I do now, or try, or read, or eat, or take? …

to date I have tried a dozen different diet changes from paleo to gluten free and everything in between.

To date I have attempted every exercise program from Pilates to hydro therapy. I even had my own home gym. But… here I am! Nothing stopped what was happening no matter how hard I pushed myself.

To date I have tried no less than 100 different supplements, from CoQ10 to Chinese herbs, and supplements based on a hair sample. Some I still take, some made me much worse. I no longer jump into meds and supplements without a great deal of caution and contemplation!

I have also tried three different biologic therapies and countless steroid injections and IV’s.

…As well as taking a dozen different medications and injections. Daily.


Simple. To get back some of the abilities I once had. To be some of what I was. To be more than just a body on a bed. To stop the endless pain that haunts every day and night. And to be in this world. To have a better quality of life. No matter how small an improvement it may be.

The world doesn’t have much patience and acceptance for people like me… But we still keep trying. They don’t often see how truly hard we try.

I know sufferers who have been diagnosed for 25 years or more (and no doubt suffered symptoms for a lot longer) who still wait for breakthroughs and volunteer themselves for experimental trials. With hope of improvements.

While it seems the world forms opinions about sufferers like me ranging from acceptance, compassion to complete disinterest and doubt, we still have no choice but to contemplate questions about what do we do now?

Where do we go from here and how do we learn better ways to deal with the challenges of everyday? Every. Single. Day.

It is some of the constant questions I ask myself. Over and over.

I keep asking myself to look for answers and better ways so that I can be more for those I love. How do I spare the ones I love from having to share this difficult road?

I know that people will choose their own actions too, regardless of what I try to do and attempt. In those cases I can only choose how to respond to the things I can’t change.

What to do?

The question isn’t an easy one when you don’t have as many abilities, capabilities and opportunities that so many other people have.

In the end someone will always judge us for what we did, what we didn’t do or what we tried to do… but how we judge ourselves is really the most important thing of all. I am learning this more and more each day. I am trying to make peace with this everyday.

In the end the only thing I can do is to do my best. Everyday. And in the end that will have to be enough.

Gentle hugs,


One thought on “What To Do?

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s