I’m Scared.

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

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.