Call Me Bigfoot!

  • I'm terrific at thinking up titles; sometimes it's hard to think up the text to go with one, but my titles are fantastic.  The one above would actually apply even if I didn't have lymphedema, since my shoe size is a 9 1/2 or 10, depending on the style, and I'm no taller than 5'3". 

    I'm only going to say a few words here...well, I'm going to try to only say a few words, since my clock is telling me to go out and get the cat litter and other things I need.  This is going to offend a few people, but I'm going to say it anyway: I'm really, really tired of hearing and seeing (in print, online, orally and in person) all those efforts to get people to "learn to live" with lymphedema.  I've had primary lymphedema since I was a cute, gangly, klutzy 10-year-old (if not longer than that); I saw it in my grandmother, who never smiled without a look of pain and never walked without difficulty; I've seen it in my uncle, who's been in bad shape for quite a while; I know of members of my grandmother's family who died from primary lymphedema.  I know how disabling, frightening, disfiguring, painful and even deadly it can be.  CDT is NOT treatment.  Call it what you want; I have a lot of medical problems and I know what "treatment" actually means: an item(s), procedure(s) and/or process(es) that, ideally, provide a remission if not a cure, or, at least, offer significant and/or lasting relief of symptoms WITHOUT putting the patient's health at potentially serious risk in some other significant respect.  What do I mean?  My compression devices, garments and accessories only work while I wear them, and they haven't done much for my toes.  Since the lymphatic system works in opposition to the laws of gravity, if my toes look the way the legs of someone with stage 3 LE look, my feet, ankles and lower legs are at risk, too, though I slave over them, so they look a lot healthier than that.  Slaving over them means I'm chronically sleep-deprived, since the slaving takes so much time.  I won't even mention the financial outlay...or the need to be hypervigilant about any scrape, scratch, pinprick or ray of sun that could touch my legs.  I will, however, mention the fact that treatment for bipolar disorder includes avoiding sleep deprivation (not just shifting from working nights to working days, for instance; it means getting enough sleep every night).

    Here's a comparison: I don't see perfectly with my glasses; after a total of three major eye-muscle surgeries, the first when I was three and the last two in the fall of 2006 and eleven months ago, my eyes are trying to work together, but I have limited binocularity because of my age at the time of the first surgery.  However, I do see clearly with both eyes, and if I can convince my ophthalmologist to add prism to my prescription (which he's been reluctant to do for fear that I'll use it as a "crutch"), I'll probably be able to eliminate the diplopia.  My brain will remain unable to fuse on its own the images sent to it by both eyes, but I won't have to worry about seeing double.  (Will I need prism?  I think so, since it's been almost a year since the last surgery, but I don't know yet.) 

    "Treatment" for lymphedema, as it stands, has been mired in the dark ages of the late 19th century since CDT was developed.  Sorry, folks, that ain't treatment.  Is anyone doing anything significant to develop something that will permit people to have lives and won't break their bank accounts?  Maybe, but the only trials I've heard of have excluded people with primary lymphedema.  Funding for such research and clinical trials being what it is, it's going to be a while before they can be done in any aggressive and productive way.

    Like anyone else with a lot of medical problems, I'd love to be relieved of one or two.  Life is complicated enough without all that stuff!  This one is certainly the most aggravating chronic condition for me, and for anyone who thinks I'm complaining too much or am "very angry," I've heard both before, so here's the whole list, in alphabetical order: anisometropia (that's an ocular disorder that means the eyes work very differently from each other), bipolar (mixed bipolar I, which is considered the most severe form), chronic renal insufficiency (early stage 3), hypermobility syndrome (some connective-tissue experts would call it a mild form of the hypermobile type of Ehlers Danlos Syndrome; others don't; take your pick), osteoporosis, nephrogenic diabetes insipidus (mine's acquired), primary hyperparathyroidism (mine's recurrent: I had a parathyroidectomy six years ago), primary lymphedema (at least since 1961, and progressive: diagnosed 2002 after cellulitis at late stage 2), secondary hyperparathyroidism (according to my nephrologist, but I'd love to believe she's wrong), sialadenitis (the result of radioactive iodine for nuclear-medicine tests and treatment), strabismus (severe) and thyroid cancer.  No need to count: it's an even dozen.  Obviously only a few of them are potentially life-threatening, though if my kidney disease hits stage 5 I'll be in real trouble as I have two rare blood factors including a para-Bombay red cell factor, which is the rarest group of blood types.

    There is only one thing in terms of lymphedema that will truly satisfy me: a cure.  None of my other medical problems is as aggravating, believe it or not.

    Time to go out and get what my kitties need...Barbara

     

1 comment
  • <i>Deleted Member</i>
    Deleted Member I am working to cure myself. I have been documenting my progress since January. At the point when I feel I have made significant progress I will reveal my methods in detail. For now I will say that my plan is twofold: get the bad stuff out and put good...  more
    May 15, 2009 - delete