Update on My Daughter

Hello friends,

I wanted to give you an update on my daughter Christina.  It has been a roller coaster year for us – but we are definitely on the upswing.

Christina was diagnosed in 2017 – right before Christmas.  Treatment was started right after Christmas.  She was put on several oral medications.  Unfortunately, she only got worse.

By June she had lost most of her vision, could not walk a straight line and barely got out of bed.  We were leading her around  the house because everything was so dark.  She also had intracranial hypertension, gastroparesis and was in constant pain.

So we made the decision to go to a PICC line.  And that was the ticket. It’s possible she just was not metabolizing  the medication properly when it was going through her digestive system.  Bypassing it and going to an IV delivery method made all the difference.  Her vision was back within 3 weeks.

Other symptoms slowly began improving also.  We began to realize that the illnesses and symptoms she has been experiencing for the last 15 YEARS were all caused by Lyme Disease.

So now, almost a year later she has literally come back to life.  She is still on her PICC line, and there are still challenges – but all in all, it’s been an amazing year.

A Warm Tip for Blood Draws etc.

Blood tests of all kinds have been part of Christina’s life for many years.  But recently she has added weekly saline infusions.  Her veins are not always cooperative during all these procedures.  They roll, blow and sometimes, just refuse to give anything.

During a recent infusion, after repeated attempts with no success, she realized she was feeling cold. Christinas always feels cold – her core temperature seems to be low right now.  Well, the nurse brought in a portable heater and  cranked it up.  It made all the difference in the world.  Since then, she has had success at every infusion.  Her nurse warms up the room – and I mean WARM – and Christina holds her arm close to the heater. So far, things have been going much more smoothly.

If any of you have this issue, you may want to carry an instant hot pack, or even a heating pad.  Get your arm as warm as possible and hopefully you will see a difference.  It’s worth a try.

Hope it helps,


PICC Line Info

Hi everyone,

My daughter found this video of a girl who currently lives with a PICC line.  She provides very clear information regarding the practicalities of this device. She talks about lots of daily living details –  from how she wraps it for a shower,  to a special sleeve that she’s found.

The link is below, as well as on our newly-revamped Resources Pages.  Hope it’s helpful!

Living with EDS: All about my PICC line

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