I’m Scared.

August 29, 2013 at 11:48 AM (Uncategorized) (, )

So for the uninitiated, before lymph-edema showed up, I already had cerebral palsy asthma, obesity and a few other prizes.  Lymph-edema, when received…is not unchangeable.  It can be slowed, it’s effects minimized…

But I’ve read about the endgame on other sites (that I’m not going to link to…)…

It’s important to say that the endgame could be a long way away for me, as long as 18 years away.  So I don’t see this as ‘terminal’ in the usual sense.  But ‘progressive and incurable’ is a true statement about lymphedema.

It involves increasing deformity of limbs…. also possibly back and neck…pushing on a track that feels to me away from being a woman and on toward the old, ugly designation of freak.

Yes, I know, no one in the disability community likes that language.  *I* don’t.  But it’s what I’m seeing and feeling, both physically and emotionally. This idea of increasingly obvious limb deformity over time is  particularly bad timing for my emotional life as well.

I had been quite accepting of my singleton status [relieved, actually.  Relationships are too damn much work.]  until recently when I realized I’ve developed something of a small crush on a distant acquaintance I’ve only met once…that now has utterly no chance of ever being anything else. Dammit.

Possible skin breaches unless I  am insanely vigilant about every red mark or pressure on skin.

Wide weight variation…sometimes *daily* as the lymphatic system labors to get the excess out of the system.

It’s going to interact with my existing asthma in such a way that eventually congestive heart failure is a possible end scenario.

I’m trying mild exercise and weight management as these do buy time and have critical positive effect.

I also use a pump, that is quite a symptom reducer, in partially mimicking what a fully functioning lymphatic system does, in moving the fluid out of the blocked areas of my legs, and into the better functioning areas of the body for processing.  Compression bandages hold the pumps advantages for twenty-four hours or so.

I am also considering weight loss surgery, because weight loss is such a positive for lymphedema symptoms,  but it’s my understanding that any surgical intervention for any reason runs the risk of further damage to lymphatic pathways both in the legs and elsewhere in the body.  It’s up to me to determine how much risk I can tolerate.

What I’m really frightened of though is that I won’t be able to keep up !positive attitude necessary to get through any and all of that.

I compare myself to others with multiple serious impairment with some sort of end date on the horizon.  And find myself wanting.

I just don’t think I can pull the ‘brave’ thing off, as regards this sh!t.

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Hobson’s Choice = Syria

August 27, 2013 at 2:09 PM (Uncategorized) (, , )

My ideas are so mixed on this…and will not line up easily with either my more liberal or more conservative readers. http://www.bbc.co.uk/news/world-middle-east-22557347

A violation of international law has been committed.

Eyewitness accounts from multiple sources and video appear to corroborate this.

One side or both sides are using chemical weapons in Syria.

Did the governmet do it, or did the rebels do it? (even though the victims were their own.)
It’s likely, in my opinon, that it was Assad, but *we don’t know yet.*

unidentified snipers fired on a convoy of UN weapons inspectors, impeding the UN’s ability
to get the facts on the ground, facts I would want before any sort
of military intervention took place.

I will presume that whichever side fired has weapons they don’t want the UN to verify.

Per USA Today, Some rebel groups are affiliated with Al-Quaeda.

One of the many unintended consequences of a Western intervention could be that the monitoring of these weapons
weapons is destabilized enough to allow the chemicals to fall into hands of terrorists interested in bringing this type of weapon to other
countries.  We don’t want that.

Whatever happens, I’m hoping for the “option” that includes the least number of deaths, military or civilian, ours or theirs.

Terrible.  Whichever choice.  Terrible.  If we don’t go in at all, we continue to look like the country that won’t stand up when international
law is transgressed, which could be seen as a “kill all the children you want, they won’t stop it,” card, i.e. more frequent and deadly use of chemical weapons.

If we do, which appears likely, will it act as a deterrent to further use of such unspeakable weapons, or make the users double down?

I’m afraid it will have the second result, not the first.

My emotions, when I see the video of those dead children, cry for an answer to that, for intervention.

But emotion should never be the reason to go to war.

Mixed feelings and no good options.

Sources:

BBC and USA today.

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Normally I would rant about this myself…

August 23, 2013 at 1:42 PM (Uncategorized)

But this blogger has it down so well, just go read his stuff.  It also disturbs me greatly that there are at least two more academics publishing in the Peter Singer crowd, touting the idea that disability should equal = death.

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Answering the Neanderthal, Knuckledragging Witch’s Pink Letter

August 22, 2013 at 11:44 AM (Uncategorized) (, , , , , , , )

Pink Letter  For those unaware, the family of a teen with severe autism got a letter telling them they were unwelcome in the neighborhood because of some effects of his disease, and in fact had no right to live in such a neighborhood, that in fact parts of his body should be donated to science and that the family should move or kill their child for the comfort of the writer of the letter to the left, signed “One Pissed off Mother.”  Here is my cleaned up no-cursewords response.

To “one pissed off mother.”

You do realize, don’t you ma’am that you and your children are one car accident away from possible quadriplegia?  One stroke away from similar debilitating physical changes, and/or cognitive deficits?  That you could be the mother of a child with disabilities as soon as tomorrow?

Young Max does the best he can with his autism.  Just as, I’m sure, your lovely children do the best they can without it.

Would you expect something so completely foul to be slipped under your door, should the symptoms of any complex impairment you  or your children might acquire become noticeable to the wider world?  Would you expect that your neighbor might suddenly declare you unwelcome?  Would you be pleased to comply if someone said the following about your child, if the child became disabled?

“Personally, they should take whatever non retarded [sic] body parts he possesses and donate it to science. What the hell else good is he to anyone!!!” the letter reads. “Do the right thing and move or euthanize him!! Either way we are ALL better off!!!”

I think not.  I think you would hope for the kind of support the rest of the neighborhood is giving Max  and his family right now, since you put that hateful excuse for communication under their door.

I’m not ashamed to say, I hope you are found.  I hope you are outed and have to answer for every single word of this offensive letter *in public* in front of Max’s family.

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Should I stay or should I go?

August 11, 2013 at 1:39 PM (Uncategorized)

Of course I’ll be the one making the decision, but it will come up sometime relatively soon (within the next year?) if I should stay in Lorain County or move to Cuyahoga when I am offered an accessible apartment there…(fairly high up on the waiting list at present)

I have a list of pros and cons for each place, for staying and going…  I just really need some input so it can help me be well decided before the call even gets made.  I’d appreciate anyone leaving their ideas and comments either here directly or on my FB page where this will be posted.  Thanks for taking the time to review and leave some input.  I’m especially hoping for ideas from other PWD’s I’ve ‘met’ online.

Lorain County (Present Home)

Pros:

Easily accessible grocery, pharmacy, haircut place, Subway, bank and church via a short short power chair ride.  I have a strong connection to that church.  It will be difficult to leave.

Quiet, safe, well maintained space in an atypically affluent neighborhood.

A really good home health care team/doctor

Prompt transport  to medical visits.

Usually great spring, summer fall weather. Milder winters because I’m outside of the ‘snow belt’ and in these areas being close to Lake Erie actually moderates the winter, doesn’t enhance it.

Cons:

No public transportation of any kind…private transport that is accessible is either insanely expensive( 150.00 a trip) or cannot be used with my powerchair…so visiting, socializing,films,dinners,plays,museums…all of which are kinda my thing…are not possible even in the limited frequency or duration allowed by the Medicare homebound rule.  There is little hope of the transportation issue changing in this county in the near future.

Friends and family have to commit to most of a day driving to see me since I am unable to drive.  (45 to 90 minutes one way for the nearest family.)

 

 

Cuyahoga County (Parma)

Pros:  Same accessible apartment type as I presently have.

Access to Paratransit (if eligible) or fixed route public transit. Means non medical transport possible, and transport likely available as I age in place and my family might pass away or move out of state…so even when ‘alone’ there would be some resource.

Many churches nearby

Closer to friends/family.

Cons

Grocery shopping will have to be either more structured (I go by bus and have to carry and handle items longer)  or the home health aide will have to go for me.

Would probably switch pharmacy to mail order (to make sure I can get meds without having to worry about weather etc.}

Have to rehire home health aide and nurse…and get a new primary care physician.

Less hanging outside in the yard etc because the grounds don’t feel like a small park like my present one does.

Worse winter weather.

 

As I’ve said, I’d appreciate any comments and opinion either left here in the comment section or in comments on my FB page.

Thanks 🙂

 

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