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I'm addressing this plea to Kossacks in the Pacific Northwest, particularly.  However, anyone who can offer concrete referrals, please do so.  This is urgent.

As many of you know, our beloved Regina in a Sears Kit House has been battling severe health issues for some time now.  Things have worsened recently - dangerously so - as Sara R has noted in her recent quilt diaries on Regina's behalf.  I've just gotten off the phone with Regina, and she has asked me to post this on her behalf so that we can try to get her the real medical care she so desperately needs.

Regina has borreliosis (incorrectly termed "Lyme disease").  She has dealt with this illness for a long time now, along with an array of autoimmune diseases.  I know a little something about how difficult this has been for her, having my own firsthand, long-term experience with multiple autoimmune disease with no resolution in sight.

I also know more than a little about the dynamics underlying these illnesses.  We had a lengthy conversation about some of the driving factors underlying her condition, and we know the sort of medical care she needs.  

She's not getting it.

More background below the jump:

Currently, Regina is in Swedish Hospital in Washington State.  They have a "hospitalist" system, meaning that there is one staff member who serves as medical advisor for everyone.  I've dealt with this system with my parents; it's a horror show at the best of times.  In my parents' case, at least the rotating array of hospitalists were actual residents (i.e., fledgling doctors).  At Swedish Hospital, the hospitalist isn't even a doctor - it's a PA (physician's assistant).  Now, I'm not here to dis PAs.  Some of the best medical professionals I've ever had were PAs.  But this situation demands an M.D., and it's flatly absurd that there is no actual doctor to treat her.

Add to that the approach that much of our corporate health care system in this country takes toward diseases such as ours ("psych consult needed"; "hypochondriac"; "deep-seated psychological disorder"; nothing physically wrong with you"; yadda, yadda, yadda), and . . . well, I'm going to put it bluntly.  People die from this sort of [non]treatment.  I almost killed myself over it last year.  And Regina's in the terrible position of feeling that she needs to start making plans for hospice if she can't get the treatment she needs - when she should be getting medical treatment and then getting back to the porch of her beloved house, with her equally beloved husband and her animals and a glass of wine and a gorgeous sunset.  In other words, she should be making plans to LIVE, not be forced into making plans in case she needs to do the opposite.

My darling little sister, Kitsap River, has agreed to take on the thankless task of trying to navigate the UW hospital system on Regina's behalf, beginning Monday.  But there are certain things that we need to try to get in place over the next day or so, if at all possible.

This is where you come in.

Regina currently has a doctor who can and will treat the borreliosis.  He knows what he's doing, and is willing to do it, and she trusts his expertise, but . . . he has no admitting privileges at the area hospitals.  She needs a referral from a primary care physician - family practice or internal medicine - who is willing to provide the referral to one of the good area hospitals (UW or similar).  There are a couple of extra caveats:

1) It needs to be someone who will not abandon her.  To repeat:  She does not need this person to treat the borreliosis, but rather, to provide a referral to a facility that will run the needed tests and prescribe the necessary treatment to get her well again.  She's been through this treatment before, and knows that it works - but if she can't get admitted to an appropriate hospital facility, she can't get treated.  If she can't get treated . . . I really hope I don't have to finish that sentence for you.

2) She needs someone who specializes in inflammatory disorders.  Where she is now, they apparently aren't even running baseline labs for our spectrum of diseases.  [Hell, her inflammatory response is so bad that she hasn't been able to eat for 12 days - and they're still not testing her properly, much less treating her.]  Here's what I'd like for her, in descending order of appropriateness:  1) A dedicated specialist in the area of inflammatory diseases, disorders, and conditions; 2) a rheumatologist who truly understands the inflammatory spectrum and will act accordingly; 3) a cardiac specialist who understands the inflammatory spectrum and can bring in the proper consult for appropriate treatment.

If you are in the Pacific Northwest (particularly WA), and can recommend a specialist in one or more of these areas, please contact me with the information, which I will get to Regina and her husband.  Better yet, if you're a medical professional who specializes in these areas and is willing to help, please contact me so that I can put you in touch with her.

Again, two crucial points:  It CANNOT be someone who will dismiss this as all in her head (it's not, and I know all too well and all too personally the pain and frustration of being told that it is); and it cannot be someone who will abandon her.  She doesn't have that kind of time, and she has very little margin for error right now.

And, yes, I'm pissed.  So if your sole purpose in commenting is to dismiss the existence of such diseases or to belittle her situation, leave before saying anything.  I'm not in the mood to put up with that sort of thing tonight, and I won't.  A friend is in truly desperate straits, and getting her the care she needs is all that matters right now.

Originally posted to Aji on Sat Jul 28, 2012 at 07:54 PM PDT.

Also republished by Kossacks helping each other, KosAbility, CareGiving Kos, Positive Intention and Lovingkindness, SFKossacks, Native American Netroots, Lyme Disease Awareness, and Cranky Users.

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