Online Support Community, Inspire

Many people benefit from weekly support groups.  Many have to drive hours just to find one near them.  It’s hard to be a patient with one or more hard to pronounce, never been heard of diseases.  It’s very easy to feel isolated.

I’m not sure when I discovered but I am sure it is a place online where I feel so not so alone.  It helped me open up about my own experiences and help others when I could.  The site is well named, because it did and still does inspire me.

One of the many things I like about the site is you are able to vent to your fellow patients and not have it publicly shared without your permission.  It’s a community with some privacy.

Do you think you are the only one with your rare chronic or terminal illness?  Check out their search and find others.  You may be surprised.

This is who can benefit from reaching out at and can find a positive experience.

1. If you have a chronic  or terminal illness.

2.  Know someone with a chronic or terminal illness

3.  Are a caregiver of someone with a chronic illness.

But you will not know the benefits if you don’t  take the first step by reaching out.

I can go on about my experiences, but like any online group, I prefer to follow the rules and keep my interactions within the group.  This is a short post, but speaks for itself.  Please visit and see for yourself.  Take the first step and reach out.

My Imagination Helps Me Get Things Done

Day 3 of #HAWMC If I had a super power, what would it be?

My super power is my imagination.  I could say my sense of humor, but I’m not always funny, just creative, so I will stick with my imagination.

As long as I can remember, I have used my imagination to get me through tough times and long before I had Scleroderma and Sarcoidosis.  No, I wasn’t bitten by a radioactive Mary Poppins spider, but I do have my suspicions about that polyester uniform I wore for my first job at Taco Bell in1985.   Now THAT would be a great Halloween costume, but I digress.

My imagination helps me get so much done,   Don’t get me wrong, if the pain will be resolved with rest, I’ll rest.  But I’m in pain all the time.  So if I avoided things just because of pain,  I would not get anything done, ever.  So to get myself motivated, I will make a task sound fun or challenging. Here is one example.  I call exercise, “Studying for my pulmonary function test.” Regular exercise not only helps my circulation, it helps my lungs get the movement they need to keep them functioning properly.    Sure, I can survive a few pounds, but I cannot live without my lungs.  I believe that in order to be able to keep them, they need exercise.  Now, in a healthy person this is true.  I don’t know if it’s helping to keep my pulmonary fibrosis from spreading, but I pretend it is and it helps me break through my wall of pain to get those lungs moving.

I will wake up some days in more pain than usual.   So rather than say, “I feel awful.”  I have a better story.  While I was sleeping,  Gnomes put me in a canvas bag, dragged me down then up the stairs at least three times, gently placed me in bed and lovingly tucked me in like nothing happened.  Blaming gnomes is just more fun. Funny I mention that because when I am on a consistent exercise routine, the Gnomes visit me less.

There is one draw back to my superpower.  There are times I do it so well and graphically, I scare the pants off my friends and family.   So I do need to keep it hidden.

Finally, one last example of how my imagination really helped save the day.  In 2011, I finally got a port o cath. It’s a device, surgically placed in the right side of my chest.  It’s pink- yup, it really is- shaped not exactly oval but not exactly round with a one way valve and three raised bumps. The bumps make it easy to find the valve under my skin so an IV can be placed into the valve.  The valve leads to a tube that goes into the big vein that goes into my heart.  The tube ends probably less than an inch from my heart.   How do I explain that   to a 7 year old?  I have no fear, my imagination is here! I told my son, I’m now part transformer.  They put an adapter into my chest to make it easy to give me medicine.  Of course, every super power has it’s weakness and for my imagination, that is reality.  My son responded with,  ”That’s cool Mom, but what is it really called?”

My superpower saved the day because it helped me get over my fear of explaining a simple medical device to my son.  I tend to overcomplicate things and my imagination opened the door to an honest conversation with my son.