REBLOG: But You Don’t Look Sick?! – A Letter On Why I Hide My Illness

I came across this post & had to add it to my list of great content to share.  It mimics how I’ve felt for several years, even prior to the transplant journey entering my life.

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(Archived) Webinar: Screening & Management of LAM in TSC: What’s New & What’s Needed

On August 11th, the American Thoracic Society (ATS) & the TS Alliance co-hosted this webinar.

I wasn’t able to join that day but I did skim through this & found it to be a good basic primer for people who know a little bit about both diseases but want to learn more.  Continue reading

Distance, Delays & Denial: The VA Organ Transplant System

I hesitated posting this when it came up in my news (from a few sources), but I couldn’t help it.  I was first made aware of the issue from this report regarding distance from VA transplant centers affecting survival rates in liver transplants.

But the problem is deeper than a single organ or a single parameter…

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REBLOG: #Spoonie Yoga Crew

I love this idea,  & have often felt the same way.   As my lung disease has progressed, certain positions have become harder to do & others send me spiking or cause intense pain.

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Is It Sad That I’m Showing Off A Concentrator Of My Own? Not Near As Glam or Exciting As a Gadget Or A Car…

After raising hell & a long few weeks, the concentrator for downstairs & travel is here.

My supplier wouldn’t allow me an additional one for the lower level of my house.

They said the reason for this was due to insurance (but that’s a lie, because the supplier that cut me off had given me two to use & I had no claims issues).

With only one unit upstairs in bedroom even when I was using the longest tubing (50 feet is the maximum you can have & get adequate delivery), it didn’t reach everywhere I needed to be.

Furthermore, who can or does want to haul this up and downstairs at least twice on a daily basis (so not practical or safe)?

I had to pay out of pocket but luckily found a place that I could get a used one (rebuilt) from.

When I ordered it, I didn’t realize how long it would take to get to my doorstep ultimately, but the main thing is that its here.

I’m relieved.  I was so afraid they’d try to deliver it on a day I wasn’t home.  Even part of me was starting to wonder if it would ever show up.

I hooked it up….& it works better than the one I’m renting from my supplier.

Good to have some flexibility back though.

This was an unanticipated expense, so I’m glad I did some fundraising because then I could use some of those funds to take the sting out of the purchase (10 Liter monster that it is.)