Scleroderma on the Fly: Episode1

This is a post contains a link to my UTube Channel for my video series:

Scleroderma on the Fly: Episode 1. What is Scleroderma?

Scleroderma on the Fly.

Please click here to watch Episode 1 “What is Scleroderma?” 

 

I mention my secondary diagnosis of Sarcoidosis.

To clairify: having more than one autoimmune disease is not uncommon.  To submit questions for future episodes, please go to the contact section and submit questions, tweet them to me or post on Face Book.  Please subscribe to my UTube channel to be notified of new episodes.

Thank you for watching and sharing this video.  I hope you will find the information easy to understand and easy to talk about to others.  My goal with this series is to teach all interested to be able to talk about Scleroderma  without receiving glazed over blank stares.

Please give me feed back if I am unclear about any topic.  No question or topic is off limits.

 

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 Inspire.com 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 Inspire.com 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 Inspire.com speaks for itself.  Please visit Inspire.com and see for yourself.  Take the first step and reach out.

Spoiler Alert! The First in a Series of Scleroderma Surprises: Raynaud’s Phenomenon.

If you would like to be surprised about some weird things that MIGHT happen to you as a Scleroderma patient this post is not for you.  In addition, if you are  enjoying a meal or snack and are a bit squeamish, I recommend you finish eating before reading.  You have been warned.

So, you have already experienced the biggest surprise of your life, you have Scleroderma.  It was not much of a surprise something was wrong and there had to be a name for it.   You just had no idea it would be something most people have never heard of, can define or pronounce properly.  The good news is, if you like surprises, then Scleroderma is the gift that keeps on giving.

Please remember, I was diagnosed a long time ago.  Back in those days, Pluto was still a planet, Seinfeld was new, and OJ had yet to make car chases a national pastime.  The things that happened to me are based on medical treatment from that time period.

Thanks to non-profit organizations like the The Scleroderma Research Foundation and the  Scleroderma Foundation and the research and education they fund,  the condition I will be describing is treatable and preventable  If things happen you can’t control, as they are will, remember one of the most helpful things you can do is remember that Scleroderma is tough, but learning to laugh at what scares you makes it easier and it will only make you stronger.

Raynaud’s Phenomenon: Surprise!
Normally, when we are cold, the muscles around our blood vessels gently contract and restrict blood flow to the extremities to preserve blood flow to vital organs.  This response is controlled by the sympathetic nervous system known as part of a “fight or flight” response.  Raynaud’s Phenomenon is when the muscles around the blood vessels respond to cold not by gently contracting, but by contracting so hard and fast, blood flow can be completely stopped in an extreme Raynaud’s attack.  When I think of the muscles constricting my blood vessels, I think of Homer Simpson’s discipline technique with Bart that usually begin with, “Why you little…”.  (Yes, I picture a tiny Homer Simpson choking my blood vessels with tiny four-fingered animated hands.)

With this natural response gone wild, your extremities will do some crazy things.  For example, your fingers will begin to feel tingly and numb.  Then they will turn red, white, and blue.  It almost sounds patriotic, doesn’t it?  I could say it makes you truly American, but Scleroderma has no international border.   When blood is unable to get to the fingertips, skin cells begin to die, but before this happens, there are now medications available to open the blood vessels and bring blood to those malnourished cells.  If this response does not respond to treatment or is allowed to progress untreated, sores will begin to appear.  These sores can last for weeks or months depending on care, or just how stubborn the muscles are around those blood vessels.

Once those muscles around the blood vessels relax,  the sores begin a slow healing process.  Now here is the freaky part.  After they heal, a scab of dry skin is left behind. The hard dry skin will snag, sometimes dislodging the hard dry skin and fall off and it won’t be painful.  Most of the time, you won’t feel it unless it is still in the process of healing.  Yes, I just told you a small dry chunk of skin will fall out of a once uber painful sore and you may, or may not feel it.  The cells beneath the dry hunk of skin have blood flow and are growing in to fill the hole, pushing out the hunk of dry skin.  When this hunk falls out, it will  leave a gaping hole.   You will be able to look inside a small hole I can only describe as looking like a nail taken from a wall.   I have experienced sores that have left a hole in many a knuckle and fingertip big enough to put the tip of a screw in without touching the walls.  Don’t worry, eventually, these holes close as the cells regrow tissue. (See picture)

Each of my knuckles has had 18 years of sores that have been open and healed. The number of sores I have had on this hand alone is in the hundreds.  As you can see, the holes are gone and there is healthy tissue in its place.  You will also notice there are healing wounds on my index finger knuckle (bottom of picture) and another on my pinky finger knuckle.  These sores are impact wounds.  Because of the claw-like deformity of my fingers, sometimes I get in my own way and bump into things.  A long time ago, these wounds would have taken months to heal.   The dry scabs still happen, but because of medication that keeps my Raynaud’s under control, my wounds heal much faster and the chunks of dry skin falling off happen less frequently.  Because of the stability of my condition and my experience with wound care, these impact wounds take much less time to heal.

Now, you may be asking, “Karen, what is it you want me to take away from this surprise? This sounds insane.”

This may not be much of a surprise, but it won’t be the first time I’ve been thought of as insane or unstable.  Please rest assured, I have been tested by more than a few psychiatrists and I’m coming up on my “Crystal” or 15 year anniversary in therapy.  I have the documentation to prove I am quite stable.  When it comes to Scleroderma, stick with me, you are in good hands.

I want you to take away two detailed important points about living with Raynaud’s:

1. Take care of yourself and take your medications as directed.
Reading about my experience with Raynaud’s and what it has done to my hands may be overwhelming to anyone who has it, but it is worth it.  Here are some tips:

A.  Keep your core warm.  I have a three layer rule:  Undershirt, overshirt and shell (something removeable like a cardigan or hoodie.)   In extremely warm weather I still wear two shirts. (A bra does not count as a layer.) It helps when transitioning between extreme hot and cold. Outdoor to indoor air conditioning can trigger a Raynaud’s attack.  This is where the shell comes in handy if the two layers do not help.

B.  Stay away from caffeine.  Caffeine is not your friend.  Coffee is a harsh mistress.  I am in no position to judge.  Decaf or moderation helps.

C.  Exercise.  As much as you can, move.  It gets your blood moving and opens blood vessels to get blood to those cells.  Don’t beat yourself up if you are not very mobile.  Talk to a physical or occupational therapist about exercise that will help with mobility of your fingers.  The exercises they assign have an additional benefit of an increase of moving blood to those fingertips.  If you are very mobile and you are not exercising, start.  Find something you like to do and stick with it.  You are more likely to stick with it if you enjoy it.  The Wii Fit is a great place to start. It got me going and Jules herself is using it to get started.

2.  Scleroderma is full of surprises.  Don’t panic.
Parts will come and go.  Most of the time, they grow back.  Take care of yourself.  You are not your disease.  Find humor when you can.  It will help distract your mind from your pain.  It sounds impossible, but it is not.  You will find strength you never imagined possible- and yes, it’s YOUR strength.

 

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.