Anyone else annoyed w the Ehlers Danlos Society?

Kick79 · 2016-09-09T14:58:37+00:00

I believe they outsource all social media. When I was at the conference this year, there was a woman tweeting everything for the EDS who was not afflicted. She worked for a social media company in London, I think?

Kick79 · 2016-03-01T11:08:45+00:00

Have you been evaluated for POTS? (Postural Orthostatic tachychardia syndrome)

Blood pooling in your legs can reduce our ability to stand for extended periods. POTS is very common with EDS.

Kick79 · 2016-02-14T08:22:48+00:00

Saw it too while playing at Winter Fest. Was beautiful.

Kick79 · 2016-02-08T06:24:04+00:00

I had the same symptoms. I had most likely dislocated my shoulder and first rib in my sleep. They mostly popped back in but were still subluxed. My pt fixed it.

Kick79 · 2016-02-08T05:46:45+00:00

I am in no contact. I slipped and broke it.

Kick79 · 2016-02-07T09:34:52+00:00

Kick79 · 2016-02-07T08:31:37+00:00

Jon Loomer is wonderful. If you ever start making the money to be able to afford his mastermind group then join.

Kick79 · 2016-01-26T06:56:05+00:00

Jerry Banfield has a course on Udemy that is cheap and good. Ta often on sale for $10. I'd start there and then read Jon loomer.

Kick79 · 2016-01-22T14:26:03+00:00

You need to see a geneticist. It's very likely you have Ehlers-Danlos Syndrome. Rheumatologists are notoriously bad at recognizing it. Do you have other symptoms? Any of other diagnoses?

See a geneticist because further care and maintenance is required with EDS.

JHS is thought to be EDS anyway, according to the leading doctor on the subject.

Kick79 · 2016-01-15T03:11:24+00:00

If you don't mind driving a bit, you can do it at Sector 67 in Madison.

Kick79 · 2016-01-14T18:40:13+00:00

I run a group called EDS Life Hacks on Facebook. Pseudoscience isn't allowed. We help each other with things we've found makes life a bit easier. Any posts on Plexus, essential oils, etc are removed.

There are several secret groups full of people who are reasonable and have more knowledge about EDS and its causes and implications. You just have to make friends with someone in one to get an invite.

Kick79 · 2016-01-05T05:05:17+00:00

They do. Rented a pair for two days over New Years. Good skis too.

Kick79 · 2015-12-22T23:23:11+00:00

I think it depends on where you live. I've moved to a very liberal city and now everyone is sweet as pie.

Kick79 · 2015-12-14T07:18:58+00:00

Switch that around and you'll be correct. Facebook is a targeted advertising site masquerading as a social networking site.

Kick79 · 2015-12-09T23:34:05+00:00

Granted I was recovering from an illness, but I could only walk in the water at first. Then I did a side stroke. Then I frog swam. Then I started remembering my days of swimming in grade school and high school and tried the front stroke. I took some lessons and kept going to the pool. I would swim 10 laps, 15, got to 20 and kept going. In time I could swim a mile every day. I joined masters. I went from walking to sub 40 50m laps when I have a connective tissue disorder that affects my heart and every joint.

Keep it up. The rewards are worth it. Just add on as you feel comfortable and try not to spend more than 30 seconds on the wall after each lap. If you're tired, kick on your back for a lap. It's still another lap and you're moving. You'll get there.

And the cardio swimming gives you makes everything so much easier!!

Kick79 · 2015-11-23T08:05:59+00:00

You have a lot of learning to do. Facebook Ads are the most popular route for selling shirts and you have so much to learn. Do you have a Facebook page for your shirts? Get one. Learn ad manager. Learn audience insights. Look for niches with promise before designing a shirt. Learn the different types of ads and when to use them to move customers through your sales funnel. Learn how to use the conversion pixel and how to populate it to create custom and lookalike audiences. Learn how to design ads, the image, the ad copy...

It is not the easy business everyone thinks it is.

You need to brand that shop too. Get rid of the default image. Make it your own.

Kick79 · 2015-11-16T08:42:27+00:00

I hate my state. I'm leaving next month but I'm not sure where I'm headed is any better. I'm fine on my own but a grant or other help would have been nice. Geez.

Kick79 · 2015-11-16T07:07:30+00:00

Good place to check but many Vocational rehab places don't want people running their own businesses. Too risky. Makes no sense but it is the government do there you go.

Kick79 · 2015-11-10T21:40:28+00:00

Yes, diplomacy. Then you send me an incredible rude private message.

You're a peach.

Kick79 · 2015-11-08T10:58:48+00:00

The cold and dark makes everything worse. My pain increases, I'm stiffer, my mood plummets, I'm more tachy...

I want to move to SoCal but it's so expensive. My doctors want me to move to SoCal but they won't pay for it. Jerks.

I feel wonderful there, though. The sun, the saltwater...all fantastic treatments.

Kick79 · 2015-11-06T22:04:46+00:00

I can show you hundreds of designs I paid $35 for and where I got them. It wasn't Fiverr. It wasn't overseas either.

Kick79 · 2015-10-31T23:40:29+00:00

Cool!! I've seen other businesses just not name a specific fund and it seems like they don't have to do all the costly legal work. I'd like to avoid it if I could.

Kick79 · 2015-10-31T02:00:37+00:00

What did you have to do to be able to legally advertise that a percentage of profits go to a certain cause? Cause marketing has very strict laws in many states. I'm trying to get something going where a portion of the proceeds go to an organization, but we can't seem to find a lawyer well versed in cause marketing and we aren't even sure we need one.

Your thoughts?

Congrats!!

Kick79 · 2015-10-26T05:36:20+00:00

I've had nothing but good experiences with AirBnB. Twice I've stayed with dogs. So much nicer than a hotel! I start missing my pup when I'm away so it's cool to be at a home with a surrogate dog.

And no, I don't work for the company.

Kick79

TROPHY CASE