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CoCo's Journey - Purpura?? What is that??

 Defnition:

Purpura - noun - the appearance of purple or red spots on the skin and mucous membranes caused by bleeding underneath the skin due to small blood vessels bursting.  These spots can range in size from small dots (petechiae) to larger patches (ecchymosis or bruises) and may indicate underlying health issues.









 

Sadly, when people see my arms, I get many responses and questions.   From how are you doing?  How are you feeling?  OR what is up with your arms???  My BFF literally said, what the hell is wrong with your arms?? Like I had been out in the parking lot bruising myself up intentionally.  And we had just talked about it a couple of weeks before when she saw it.

Are they pretty??  No.  But, they truly are the way I know the status of my health.  Between seeing this stuff show up on my arms and my overall general state of strength lets me know if I should be concerned.  

Right now, my arms are actually looking much better.  I've found a gel or cream to help with the bruising.  But they were also working toward improving. You may notice the scabs and the scars.  The scabs are caused from when I would scrape or scratch the surface of the blood pools under the skin.  They would rip open, bleed like crazy and scab over.  I became a bit insane at some point, and just started picking at my skin.  Nerves and frustration.  Picking at my scabs and grossness became my way of dealing with the frustration and stress.  

So, yes, my arms are very ugly.  Summer gardening and projects have ripped a lot of holes into my skin.  Does it hurt?  Not really.  Only when I pick at them and the scabs open up.  They bleed like crazy.  But I am bound and determined to get my arms back to a normal color.  Had I taken photos two weeks ago, they would have been really disgusting.  In fact, my granddaughters spent a night a couple of weeks ago, before they had to go back to school.  The littlest one, who is eight years old, said - what is up with your arms??  They are disgusting.  Then she put a piece of paper from the pile she had for coloring and says; "I am covering them up, because they gross me out".  

How am I doing??  That is up for debate and is a day by day and different answer pretty much every day.  I try to make sure I get a large dose of protein every day.  I have been focusing on a protein powder that has no flavor and putting it in a frozen fruit smoothie, a hot chocolate or today I made some NestleQuik chocolate milk this morning and added it to that.  It seems to help more than anything.  But, I'm still tired.  I'm still weak.  I'm back down the around one hundred pounds.  It goes up and down every day by how much water I am retaining.  I am trying to deal with not taking diuretics so much.  But, every day I skip (which I'm trying to do every other day right now), my legs swell from the water retention.  

I have an ulcer.  I had an endoscopy on August 21, and the doctor found I had an ulcer.  I was really hoping the diagnosis, and the treatment would start helping my health improve.  And it has to a certain degree. My doctor and I feel the ulcer is causing a lot of gas distention in my belly, nausea and vomiting.  Nothing worse than being at a restaurant, eating really delicious food and suddenly needing all the napkins because you're suddenly vomiting.  Happened twice.  Really disgusting.  I had to quickly learn how to listen to my body.  The best part is, I can throw up and then sit down and finish my meal.  I just needed to get that bubble out of my diaphragm.  

I have a follow-up appointment with my liver specialist/gastro specialist on September 25.  I am off work until September 26.  I honestly don't know if I can go back to work.  We will see what the next 14 days brings.  I do intend to press for answers.  I want to know if I need to get IVY out of the closet and start TPN again.  My doctor says he wants to do a PEG tube if I get to that point again.  If I have to have procedures, I would really like to get them done and over with so I can move on with life, one way or the other.  I need answers.  

I apologize for the not short answer to how am I doing.  But I felt like I need to get my story written for how I am doing right now.  This is my journal.  This is how I am chronicling my story.  Because we don't know how this story ends. 

Thanks for listening.  Sorry you have to see my ugly arms, but it is a conversation starter.  And to reward you, here is a little selfie of me...........................


The ugliest skeleton on the block.  
<3 




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