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Reposted from aitchdee by mettle fatigue
To my kind and caring friends here on the GOS: I'm still recuperating from a painful bout of pleurisy (an inflammation of the lining of the lung, a common complication of the more severe forms of rheumatoid arthritis), but I didn't want to wait any longer to say thank you.

I simply can't begin to thank you enough for your kindness and generous support. In June it will be one year since I was diagnosed with RA and had to leave my job and go on temporary state disability--a leave-taking that resulted in a cascade of negative events and mental health-mangling financial woes. My state temporary disability benefits were terminated in November of last year, and yet I couldn't go back to work--in point of fact there were days I could barely walk. I was in terrible trouble, the worst I'd ever known.

In the midst my physical decline, I want to mention that in February of this year I also came within a hair's breadth of losing my house, but thanks to the good advices of many knowledgeable kospeeps, that nightmare was averted, and I remain in my home for now.

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Sun May 03, 2015 at 04:00 PM PDT

Silence Won't Stop An Epidemic

by Besame

MAYDAY! Take A Bite Out of Lyme and Thunderclap for ME/CFS/ME are some of the campaigns occurring in May for NEID awareness. Also new, a major lupus study seeks participants.

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Reposted from lisakaz by Besame Editor's Note: Retrospective advice of great value. -- Besame

[Note: A group asked me to write an article especially for Lyme Disease Awareness month, but I have not seen it, so I am putting this out (first or not) on my own blog. It's slightly re-edited from what I sent to the LDA group member who contacted me.]

There is so much I could say to my younger self that may have avoided Lyme et al. altogether or would have given me a real chance to be appropriately treated.

Many people with Lyme and/or co-infections think that they did something wrong initially and at least sometimes chastise themselves that had they pursued Lyme etc. from the beginning, they never would have had their debilitating conditions. Frankly, I am not certain of this. I was treated and at a point that was considered early at the time. The inadequacy is beyond question.

Of course, when that insufficiency happens and Igenex says you are CDC level positive 12 years later, the CDC/IDSA find an excuse to say it's a "false positive." It's funny how those groups can openly admit the inadequacies of present diagnostics yet use those tests, when negative, to say "You don't have it" and still say "You don't have it" when you test positive. I call that convenient and talking out of both sides of one's mouth. It's as if when they don't like the result, the test is wrong, but when they like it, the test has to be right. As Dana Carvey would say "Well, isn't that SPECIAL?!"

The other, related point is that doctors used to always tell patients to take all of a medication, because stopping just when symptoms cease can cause mutations and greater difficulties down the road. Isn't it soooo odd that this concept is never even suggested about Lyme et al. (or just con-veeeee-nient again)?

Given all the above background, here is my letter to myself and I'll choose to send it for receipt the day before I believe I got the tick bite that derailed my life.

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Reposted from Support the Dream Defenders by mettle fatigue
I visited BFSkinner in the hospital this afternoon. He is no longer bleeding.  

He did not have a vena cava filter placed, and there is no plan for him to have one implanted at this time.

He is back on Coumadin, which he has taken for many years for his inherited blood-clotting disorder. He has factor V Leiden thrombophilia, an increased tendency to form abnormal blood clots in blood vessels. Coumadin counteracts this tendency to clot too easily. He will remain in the hospital until his Coumadin level becomes therapeutic.

Gory medical details: The theory about what caused his recent bleeding episode: During the first hospitalization, about 15 days ago, he had surgery to remove a piece of his small intestine which was surrounded by a mass that was not cancerous. The tube had to be sewn back together. Apparently the scab on the inner side of the ring of sewn-together tissue broke loose about 10 days later, and he lost a lot of blood. After he received three units of blood, the bleeding stopped, and when they performed the super-duper bleeding test noted previously, they found no source of bleeding.

He is walking a little again, and he is eager to get out of the hospital.

This is my fourth diary regarding BFSkinner's hospital adventures. Feel free to pick up the backstory from my last few diaries.)

Blue cat dancing: Not sure if the cat represents him, me, or us.


Thu Apr 30, 2015 at 05:48 PM PDT

KosAbility: May Update

by postmodernista

Reposted from postmodernista by postmodernista

May 3 - Besame will be discussing her experience with at least one app used to track chronic illnesses
Also, May is NEID - neuro-endocrine-immune disorders/diseases awareness month. NEID includes CFS/ME/SEID, MS, Lyme, fibromyalgia, MCS, Gulf War illness and others, so discussion of those conditions are welcome as well

May 10
 Chronic Headaches and Botox - Kathy in ga

May 17
 Good Genes and a French Irish Temperament - drudau
We do not need to identify ourselves by the trauma we have experienced.

May 24
 Pain 101 - studentofearth

Reposted from Community Fundraisers by mettle fatigue
Heap of US pennies, nickels, and dimes
This is a followup diary to the one I posted last week, which was itself a followup to the one in January (please see these for more details). Longtime Sacramento-area kossack aitchdee found herself disabled by rheumatoid arthritis, unable to work, and facing immediate tax auction of her modest condo. Serious roof leaks had consumed her savings and now made it impossible to sell the condo for enough to pay the tax liability, so she turned to us fearing that she was about to become homeless.

The good advice she received here helped her file the correct form of bankruptcy just in time. This does NOT discharge her tax debt, but it forces the county to wait one year before the auction. Meanwhile, she's received assistance from another expert kossack in completing her application for SSDI benefits, and is thought to have a good chance of success (because she is so obviously ill in ways that interest SSA). Now, she needs financial help to keep going for the estimated 4-5 weeks until she gets a response. (If the response is negative, she's in trouble and she knows it, but if she is accepted, then she can figure out how to find a living situation that's affordable for her once she loses the condo.)

If you can help at all, now or in a week or two or three, please continue below the fold to learn how. She is so close to being okay, and even small amounts can help her eat, feed pets, keep the lights and water on, get the expired car registration renewed -- all life's expenses that do not wait just because there is no income. And if you have nothing to spare, please consider helping with recs, republishes, mention in open threads, and social media shares and tweets, to help us reach others who might have more resources.

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Reposted from Kitchen Table Kibitzing by mettle fatigue

Input for improvement welcome: comment or kosmail to diary writer. Revision is in process.

JOB  1:  Someone with permission of the kosak in trouble has written a diary stating who's the kosak in trouble, what help is needed, and what means are in place so help is receivable. Often you'll see the diary published by Community Fundraisers or a group the kosak in trouble is a member of (group publishing reaches friends immediately & makes updates possible by other group editors/admins in case the original diarist can't, says belinda ridgewood who magnificently writes a lot of them; also that anyone writing such diaries can kosmail to a Comm'ty Fndrsrs admin, ask to be made a contributor there, explain what your diary will be and when it needs to post; and group members there will help you if they can, if you keep communications open.)


JOB  2:  Go to the profile page of the kosak in trouble, find all groups in which the kosak is a member, and:

         2A:  Readers who are editors/admins there republish the diary to those groups.

         2B:  Contributors see if that's been done and if not queue it and kosmail repub requests "to help a member of the group" to 1 or 2 eds/admins at each whose profile page shows them currently active in DK.

               Don't bother with Message-to-Group: it won't put a New Message alert in any
               WELCOME BACK box & can go unseen forever. Don't worry if others are doing
               the same as you: together the bases get covered better than any 1 or 3 alone.

         2C:  Non-members check is it repub'ed at those groups? If not, kosmail the diary link to 1 or 2 active eds/admins at each, requesting repub to help group-member.  Don't worry etc.

JOB  3:  If the diary says where the kosak is, find groups in a 200-or-so mile radius in Where The Kogs Are — folks there may have friends/relatives nearer who might be able to help.
                  3A:  See 2A  ◄►  3B:  See 2B  ◄►  3C:  See 2C

JOB  4:  Check the DK Health-Med & Related Groups & Series to find groups focused on health or socioeconomic needs cited in the diary — members there may be knowledgeable about resources & coping.
                  4A:  See 2A  ◄►  4B:  See 2B  ◄►  4C:  See 2C

JOB  5:  Send the diary link to individual kosaks you know with expertise in that kind of emergency, or who are near it but not in a group where they'd read of it.

JOB  6:  Come back and recommend and tip the diary, and comment on:
      6A:  what groups you repub'ed or queued or kosmailed the diary to with reasons why, so readers who don't know The JOB will learn it from you.
      6B:  resources you have reason to know may be available where the kosak in trouble is, and how to reach those resources.
      6c:  offer whatever donations and words of fellowship as always.

Why not "6c" first? Because time is of the essence to spread word far & wide in DK which mobilizes fully effective help fast and gets the diary heavily rec'd and tipped so word goes even further.  But emotion can pull us so deep into events that we get sidetracked from what's personally immediately powerful to do, while every delay multiplies geometrically all along the line, and things get scarier and worse than maybe have to. Since forever, telephone-trees, amazingly global 'ham' radio (my heroes!), bicyclers town to town, foot-runners, drums — come fire, flood, famine, avalanche, bush-war — people send out the call. And stay connected to check on each other in case of emergency, like Itzel Alert Network (in the first of the 2 lists in DK Health-Med&Etc Grps). Like all of DK can. So, spread the word - that's why.

Later, Job 7: kosaks wanting to stay help-ready can republish this to your groups (the section above the green line will shrink as revision addresses omissions), and periodically Move To Top so even in disorienting emergencies Dk grps have checklists to help us come through for each other.

New folks join DK constantly. Let's give them opportunities like this to matter, by their actions, right from the get-go.

What other virtual first-responder actions and groups should we remember and/or include, and where in the sequence? Are there diaries good to link here and repub and Move To Top at our groups? What ways of spreading word and mobilizing help do you recall from when you were a kid, or how your parents or g'parents did it? Or thru'out history!

BTW, reading the please-help diaries, I kept thinking: "when [troubles] come, they come not single spies, but in battalions" ...from Hamlet, Act IV, Sc 5. This week we also had diaries on how Shakespeare continues to speak to our lives.  10-Q 4 the inspiration of all the diaries.

Reposted from guavaboy by mettle fatigue

My adult daughters, in a strange turnaround, keep demanding to know my exact whereabouts these days, since the earthquake here in Nepal.

I am fine and I was nowhere near the epicenter. My teaching project here takes me outside the Kathmandu Valley about half the time, and I was in the Terai, teaching at a medical school, when this happened. It's the hot flat part far from Everest.

My daughter asked how to show some visible solidarity with Nepal, and then she asked me a question that made a lightbulb go off...... step over the orange piece of earthquake rubble to read what it was.....

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Reposted from TexMex by mettle fatigue

A Response Team volunteer  message to donors.
ShelterBox Response Team volunteer Becky Maynard has a message for donors and supporters which we're releaseing as she's 30,000 feet in the air flying to join the ShelterBox relief efforts in Nepal after Saturday's eaarthquake.

 photo boxcontents_large.jpg

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Reposted from Support the Dream Defenders by mettle fatigue
BFSkinner in 2010
Sigh. Our friend BFSkinner returned to the emergency room on Friday due to intestinal blood loss and extreme weakness. He remains hospitalized at William Beaumont Hospital in Royal Oak, Michigan, north of Detroit.

He received three units of blood. His intestinal bleeding has apparently stopped for now. No site of blood loss was visible on a red blood cell nuclear scan. His doctors cannot determine if the tear has healed completely or if the rend is bleeding intermittently with a periodicity of one to two weeks.

Some of his doctors want to give him the blood thinner Coumadin to prevent blood clots being thrown to his heart or brain. He had a clot already which lodged in an artery on the surface of his heart, for which he had a stent placed. Other doctors reject Coumadin because of his risk of hemorrhage. Coumadin has caused him to hemorrhage in the past.

He told me he has to choose between death by bleeding and death by heart attack or stroke. Immediately after delivering this news, he made me laugh by telling me a funny story about an interaction with one of his doctors. We both laughed.

Looks like he will undergo placement of a temporary vena cava filter in the next couple of days. This filter will be removed in about 30 days.

His family is nearby. His sister lives in the next town, and his brother has not yet returned home to China.

I found out about his rehospitalization today. BFSkinner asked me to say his continued illness has kept him from participating at Daily Kos.

Again, he cannot view Daily Kos on his cellphone, but he can make limited comments on FaceBook.

Instead of creating another incredible collection of get-well notes for him, please take a moment as you hover over the Tip Jar to send him gentle but firm and certain healing.


A short introduction and then deeper into subject of making changes in your home and work environment. I have 30 + year history of providing and coordinating care for various elderly relatives. In my practice, I specialized as a consultant pharmacist. It has given me a front row seat to the changes in our medical care, how families and individuals cope with functionality changes in their lives, the various levels of community support, social safety net changes in the states and the caregivers.

I believe that good medical care is important. BUT, an individual’s quality, participation and enjoyment of life is more dependent on the attitude of the individual, living environment and social network surrounding them (including pooties and woozels). Medical interventions such as drugs, surgeries, therapy, nutritional/herbal supplements are a double-edged sword. The can be of great benefit or the proverbial stick on the camels back that causes everything to collapse.

Making changes to ones environment to accommodate a physical or mental challenges tend to be viewed from polarity of two perspectives and we shift back and forth along that spectrum. First, it is giving in to the situation to alter a home to accommodate life changes and it is a sign of weakness or lack of competence. Second, our total environment and personal interactions should be altered to accommodate life changes. My first experience into these different approaches was at two different great-grandmothers houses.

Great-grandma M kept her house in perfect order and the lawn extended straight to the street. When we visited as small children it was our parents responsibility to keep us from touching or damaging the crystal figurines on the coffee table, sit quiet for a multi-course meal and not run into the street. She was rigid in her approach to life. The only time I remember her being overjoyed at seeing two little girls and didn’t say “quiet your too noisy” as we giggled was at the nursing home.

Great-grandma L had a nice house, lawn and vegetable garden. When we were too energetic, we could play outside in the fenced yard. When she could no longer run the wringer washer on her own, Mom would come over and help. Later Mom would just pick up the laundry, bring vegetables from our garden and Great-grandma had toys and games for us to play inside with her. After her last heart attack, a woman was hired by the state of Oregon for assistance, which allowed her to live at own home for the remainder of her life.

Below the fold I am going to list accommodations, I have seen used for different issues to either help the individual or the caregivers (we do not want them exhausted). I encourage you to share your experiences or challenges in the comments. (Occupational therapists, caregivers and individuals who have made changes please give us your input).

a block of nine abstract depictions of disabilities
KosAbility is a Sunday 4PM leftkost/7PM east volunteer diarist community of, by & for people living with disabilities, who love someone with a disability, or who want to know more about the issues. Our use of disability includes temporary as well as permanent health/medical conditions — from small, gnawing problems to major, life- threatening ones. Our use of love someone extends to cherished members of other species.

Our discussions are open threads in the context of this community. Feel free to comment on the diary topic, ask questions of the diarist or to everyone generally, share something you've learned, tell bad jokes, post photos, or rage about your situation. Our only rule is to be kind; trolls will be spayed or neutered. If you're interested in contributing a diary, contact series coordinator postmodernista.

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Sun Apr 26, 2015 at 02:00 PM PDT

My Superpower

by The Gimp

Reposted from The Gimp by mettle fatigue
Making others feel good about themselves is my superpower. I don’t do it consciously - it’s more of a part of who and what I am.

I’m Larime Taylor, and I was born with Arthrogryposis, a condition that leaves me with little use of my arms and legs. I draw with my mouth. I’m a caricature artist and comic book cartoonist (that’s the fancy term for creators who write AND draw their own stories). I've lived in poverty on Social Security for most of the last 14 years, and only after moving to Las Vegas in June on ‘14 have I really had a means of making a living.

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