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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Haven’t had a decent rant in a while…Updated4x

February 22, 2010 at 11:47 AM (Uncategorized) (, , , , )

But Bob Marshall state delegate from Virginia really peeved me out with the quote below…

And here is the audio

I sent this email this morning…

Dear Delegate Marshall (and/or the office staffer that reads this.)

I’m a person with disabilities.  I’m a widow of an Evangelical Pastor.

And I take great issue with your statement…

“”The number of children who are born subsequent to a first abortion with handicaps has increased dramatically. Why? Because when you abort the first born of any, nature takes its vengeance on the subsequent children,”

as well as:

“In the Old Testament, the first born of every being, animal and man, was dedicated to the Lord. There’s a special punishment Christians would suggest.”

This email will not be as courteous as polite discourse would demand, but frankly I don’t give a ____

First.

I believe quite strongly that putting the words out in public that disability is a revenge against Moms planned by God is sacreligious and blasphemous, and you know what they say about blasphemers.

Second,

To use your so called Pro Life position to publically conflate the very real struggles and emotional pitfalls that parents and children with disabilities go through with ‘vengeance’  is to suggest blame on the child and complicate the parent-child bond.

And if some emotionally fragile parent  with a disabled kid *agrees* with you enough, you’ve planted the seed that they may create a toxic home environment, or God forbid, harm the child.

It goes beyond irresponsibility.

I know many many other folks with disabilities….without exception, they are not punishments to their families.  No matter what the Mom did or didn’t do in the past.  These families have anguish sometimes.  That’s not revenge.  That’s living.

Caregiving is tough, yes, and they struggle.  Not because a loving and merciful and compassionate God is using them for revenge…but often because folks in the legislature love to cut Medicaid or Medicare funding, or vocational rehabilitation programs for adults with disabilities who’d like to become workers and taxpayers and eventually help pay folks like you a hefty salary.

I’d bet my power chair that most who cut these things at both the state and federal level are Republicans.

It’s amazing that many Pro Life voices don’t live up to the logic of the title.

By the way you practice it.  Mom’s lives aren’t sacred, but babies are. The beginning of life is sacred, but the entire span of life is not…people are only ‘sacred’ when they are infants…beyond that…forget it.

Babies with or without disabilities have sacred lives, but adults with disabilities are invisible enough to cut life sustaining support from, or institutionalize.

Third.  I’m not God’s vengeance on my family.  No one with my DNA has ever said that I was God’s vengeance for anything, sin, or abortion, or anything else. They respect my dignity as a person, and would never drag the idea of my disability into the public limelight to further a political agenda.

Let’s turn to Scripture (and to help your limited little head I’m using the King James Version which is doubtless the only one you see as ‘correct.’):

Mathew 7:23

“And then will I profess unto them, I never knew you: depart from me, ye that work iniquity.”

Your words work iniquity sir.

As my husband used to say:

Pray on this Scripture message.  Let it dwell in your heart and reveal it’s full meaning to you.

Jean M. Flynn

Update in the interests of  ‘fairness.’: The gentleman from Virginia responds to criticsim.

He is now saying he does not equate ‘nature’ with God.  In his belief system though, God made nature, and is the driving force of all things that happen in nature.  That still leaves nature, as a vengeful force in this world.  Nope.  It can cause human heartache on a massive scale, as in Haiti, but uprooted, wounded or lost lives solely due to earthquakes,  or tsunamis are intention-neutral.  They are most demonstrably not ‘vengeance.’  So his statement is still full of something.  I won’t say what.

The word vengeance is in the original statement.  Even if he does not use ‘nature’ as a dogwhistle for the word “God” in context, the false equivalecy of  children with disabilities with the word ‘vengeance’  remains an offense and an affront, and I still contend, blashphemy.

Hehe. Marshall made WPIW tonight on Countdown 🙂

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Before you watch this:

September 4, 2009 at 3:21 PM (Uncategorized) (, , , , )

Be over eighteen. Be somewhere to the left of McCain politically. Those who can drink I suggest you imbibe one of your faves before watching, and use the second to take a sip anytime you would normally say “WTF?”

Because the last time I made the kind of bizzare, World Net Daily, connective conspiracy tissue out of absolutely nothing that Glen Beck does it was fall 1991 and I was experiencing some truly scary and mindfcuking side effects from my chemo medication.

I admit, Olbermann goes a bit slobbering and wild eyed here. I admit that.

I also admit that I love the detail of this dissection.

And, Keith reminds me again he’s a sci fi geek. “Don’t get on that ship!”

Le Sigh.

Watch this and enjoy.

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This just kills me

April 17, 2009 at 2:28 PM (Uncategorized) (, , , , , , , )

the diary itself is good, a statement that overweight or obese persons are people too, and don’t need shaming….

But in the forest of comments, a commenter felt the great need to shame…

Ive met very few really handicapped overweight people. People who were born with defects.

EVERYONE has a goddamned sob story about how they were beaten or raised wrong, or stress, or blah blah blha

ya know what, So did I, I had all those things, and I also said “my weight and what i put in my body is at the end of the day ONLY MY responsibility”

end of story. no excuses. Im not as skinny as Id like to be, but I sure as hell am not the fat lazy bastard I used to be , who used every facet of my life to excuse why I was fat.

Screw that, you can either DIE or lose weight, that is your choice. I chose life.

For most people who are grossly overweight, here is something you probably dont wanna hear, but im going to say it: IF YOUR HEALTH IS NOT PRIORITY ONE YOU ARE KILLING YOURSELF.

your health comes before your children
your health comes before your spouse
your health comes before your career
your health comes before EVERYTHING , because otherwise your ass is dead and there will be no excuses then.

There are ways to fix it, my suggestion is find a good diet, and find a good outdoors hobby that keeps you active

Diet: STOP EATING DAIRY , we dont need it as adults, Cut down your Red Meat consumption, you dont need it as an adult.

Excersize:Find something you can and WANT to do everyday, find something you’d LIVE to do…and then do whatever excersizes help you with it. chase it like its going out of style.

Diet and Excersize are the only things that will ever save you, Dont for one second think some stupid lapband is your free ticket, our bodies were not intended to have our stomachs ARTIFICIALLY SHRUNK because our idiot asses will not stop stuffing food down the hole.

you wonder there’s a huge mortality rate on those things….think about it.

I called them out….

and they asked me to, and I quote. “Excuse” myself from the comment thread…..

Not Generally The Thing To Ask Me.

Heh

For the record, I’m all for exercise and a balanced nutritional plate. And any overweight person should admit to any addictive eating that *they * did that helped to get them where they are…

They should admit it to family and physicians and *not be ridiculed by strangers* because where will that send them…well, perhaps…to the refrigerator.

as Harlan Ellison said, “Everyone’s entitled to their own *informed* opinion.”

I’m glad the poor fool is healthy, now, if he could also learn prudent speech, we’d have the makings of a real human on our hands.

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I’m glad there are others who can do

February 27, 2009 at 12:26 PM (Uncategorized) (, , )

this, publicly rage against those abled who, sometimes get almost inarticulate with anger when they find they must accomodate us.

Obviously this place isn’t low on snarkage. But, my rage is *sometimes* tied directly to my bipolar, and I find that if I let it loose, it can lead to days (weeks) of my emotions running me, instead of me being in charge.

So this late in life, I have to learn to “hold back.’ Not because any particular inhabitant of the able world doesn’t richly deserve having their mental skin flayed off by a verbal cut or 100, but that in my case, there isn’t enough control on my side to guarantee that that barrage might not result in bad emotional balance for me.

Thank god for other blasters.  Go get ’em.

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