The increase in uncertainty

August 9, 2012 at 8:45 PM (Uncategorized) (, , , )

Ever since my time with lymphedema began, there have been some nagging uncertainties that recently got more nagging.  There have also been some positive developments…rather geeky cool velcro leggings custom measured and able to be put on by anybody without any fainting couches, pearl clutching, frantic denials or suggestions of placing me in a skilled nursing facility.

The only problem with these leggings is that they are not inexpensive and not covered by Medicaid…

I have been uncharacteristically quiet about the following, done more research and gotten some quiet off the record answers that don’t make me happy in one sense…but give me some relief in the other sense because in any medical situation….I just want the effing facts.  Right here, right now, right away.  Not so I can deny them or act like I can change them, but so I can know how to work through them.

For the last six months because of fear of being sued, or really not knowing,  no one has been able to tell me the effect of a rather uniquely unfortunate situation on how this is going to progress.

A lot of folk with lymphedema got it due to breast cancer…a cancer that tangetially got a hold of a lymph node and attacked it…and so ten or so years later the system is weakened,  lymphatic fluid is blocked and lymphedema shows up.

When I had Hodgkin’s lymphoma, the last cat scan before chemo showed sixty (count em’ ) sixty nodes as being affected by the cancer.  I don’t know what the chemo did to the nodes themselves…thankfully it knocked out the cancer.

When I got the lymphedema, it was explained to me that it is incurable.  Treatment can manage it, limit the open skin or infection that can come with it.

If no other causes intervene though, the endgame is congestive heart failure.  That’s not a maybe.  I do not have congestive heart failure at this time.

So…I asked, um, what does that mean

“You could have two years…you could have twenty.”

Inside my head, I investigated the two colliding facts that seemed to be running around in it taking up a lot of space.  One, my lymph notes were *already* beaten up twenty years ago.  Not one or two, but many of them.  Two, this is a clear signal that my lymphatic system is working poorly.  The conclusion I’ve drawn, that I’ve shared with a few medical people, is that I’m unfortunately on the shorter end of that timeline.  None of the ones actually responsible for my care will commit to a yes or no answer on this, for fear of being sued, or fear of being right or wrong….but there are some that became good friends during the very early going of this in rehab while I was still in the hospital.

Everyone who knows me knows that I have this unfortunate habit of standing on the last nerve of the worst case scenario…

but these friends of mine, (not anyone currently treating me for anything) when I gave them my “I’m probably on the shorter end of that timeline,” scenario, have looked me straight in the eye and said: “You’re smart.”

So, that’s annoying, this reshuffling about how is my life going to go…

And, there is a new paradigm about, if any of the current folk responsible for looking at my legs see any atypical swelling, anything that looks different fromwhat is ‘normal’ for them now. then it’s “call the doc right away, this could be an infection, go to see him or go to the er…”

Don’t be doing anything *important* because you might have to drop everything if there’s a two centimeter change in the size of your legs…then it’s all earnest medical testing and sudden alteration of whatever you might have planned.

I’m trying to normalize my relationship with food (and eliminate as much salt as is humanly possible) and there are many days I am not sucessful, in part because I’m so completely freaked out about this.

But, unusually for me (*very* unsually)  I don’t like talking about this out in the world.

Because it wastes any good times I have during the day.

Obviously that’s time that cannot afford to be wasted.

This is why I need everyone in my life, as I have asked before….to please handle their own freaking *lives* and let me manage this in relative peace,  so that when you visit or call I can (at least mentally) mostly be the person you remember, not let the Scary Lymphedema Stuff out of it’s prescribed area of my life,  and we can have a good time.


Thank you,

The Management.

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