My Life with Ehlers-Danlos Syndrome

Fresh Look and Fresh Outlook with Dr. Brad Tinkle

2011-11-16T07:23:00.001-08:00

Hey, everyone, it sure has been a while! I have been so very busy this summer, but am back in action with the blog now, and hopefully will have some good medical news soon, too. As you can see, I have done a complete revamp of the website, which I hope you find to be user-friendly and full of the information you crave. Please take a peek around...

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Smiles and Pajamas

2011-07-10T22:29:00.000-07:00

Hi, friends! Sorry for the break in posts, it has been a very busy few months. I have lots of updates and posts I am working on and will get them up soon, but until then I may just post a few random things. Today's randomness: zebra pajamas. Target (United States) currently is carrying these adorable (and ridiculous!) zebra PJs by Nick and Nora. I...

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Natural Treatment for POTS

2011-06-21T11:37:00.000-07:00

One of the sites I really like for all things natural, NaturalNews, posted a great article today about Postural Orthostatic Tachycardia Syndrome and treating it with exercise. While, in my opinion, this article is specifically for those with stand-alone POTS and not POTS secondary to EDS, we can all take the advice from it. We can work within our...

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Easy to Read Blood Pressure Chart

2011-06-08T11:37:00.000-07:00

I came across this blood pressure chart a while back and I think you all would like it. For those of you with POTS, especially those just diagnosed, it makes understanding changes in blood pressure a bit easier. Hope it helps! Click here to view full page image. xodaniSubscribe to My Life with Ehlers-Danlos Syndrome by Email

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Yoga for Ehlers-Danlos Syndrome

2011-06-01T13:16:00.000-07:00

Hey, friends. Hope you are having a nice day! I am very excited about my topic today, so without further adieu... I have shied away from doing yoga my entire life. The few times I have tried pilates I have dislocated my shoulders and that was enough to keep me far away from anything similar. I also was under the impression that yoga would be...

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What to Do When Your Friend Has an Invisible Illness

2011-05-31T19:17:00.000-07:00

Hey, friends! I wanted to do one more quick post as EDS Awareness Month comes to a close; I found this video to be quite accurate and wanted to share. It is the perfect piece to pass along to friends and family....

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May is EDS Awareness Month in Ohio! Sweet Treat!

2011-05-24T13:49:00.000-07:00

As you all know, EDS Awareness Month is upon us, and my goal of getting Nevada to pass a Proclamation came to fruition this May. You might not know, however, that I have a connection to Ohio, as well. Girlfriend lives in Columbus, OH and I have had my eyes on the prize of a Proclamation in that state, too. I went to work a few weeks ago and just...

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Random EDS Posters Around Northern Nevada

2011-05-23T13:47:00.000-07:00

The rest of the EDS posters and flyers found random homes in the Silver State... I got 2 sizes: 11"x17" and 13"x19" Dr. Killeen's office stuck one up, and I had too much fun while I was there. Lol! Got one up at City Hall in Sparks. I was able to stick some flyers on the tables at this random doctors'...

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Got an Article in the Nevada Appeal

2011-05-21T21:03:00.000-07:00

A local paper, the Nevada Appeal, did an online piece on EDS after receiving my press release on May being Ehlers-Danlos Awareness Month in the State of Nevada. How exciting! "This month is “Ehlers-Danlos Syndrome Awareness Month” in Nevada, thanks to a proclamation by Gov. Brian Sandoval. The proclamation comes as due relief to...

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Washoe County Schools Approve EDS Posters!

2011-05-20T11:59:00.000-07:00

Part of my goal for Ehlers-Danlos Awareness Month was to get posters put up at the schools in the area. In order to put a flyer or poster up at any school in the district, the school district's communications office must approve them first. My goal was also to get them up as soon as possible, since some of the schools would only be in session for...

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Open Letter to Those Without Ehlers-Danlos Syndrome

2011-05-03T23:54:00.000-07:00

An EDSer friend shared this with me, and in honor of EDS Awareness Month I wanted to pass it along. The original author is unknown, but it is a perfect way to describe our lives to those without EDS. Perhaps, you might want to send it to some of your friends and family, as well. I know in my circle, I have a few people that I think really should...

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May EDS Awareness Month: How to Help!

2011-05-01T22:42:00.000-07:00

My darling friends and family, Happy Ehlers-Danlos Awarenss Month! This post is dedicated to ways we can all help those with EDS by doing things like raising awareness and helping with funding. Yesterday's exciting post about Nevada's 2011 Proclamation included info on how to work on getting a Proclamation passed in your state. The first...

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May is EDS Awareness Month in Nevada Again!

2011-04-30T19:14:00.000-07:00

All over the country, EDSers are trying to make their mark by getting their states to make May Ehlers-Danlos Syndrome Awareness Month. Last year, I was able to get Governor Gibbons to make Nevada May EDS Awareness Month, but as some people don't know, it doesn't stop there. In most states, Proclamations are only good for one year, so in March I...

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Spinal Cord Stimulator: Final Outcome

2011-04-30T00:54:00.000-07:00

Hi, lovely friends! It's a tad late, but I have just been getting up to the "norm" and feeling able chronicle this entire experience. Just to recap, for those of you who mentioned you just found me and this info, here are links to the other neurostimulator posts, in order, with this being the fifth and possibly last: I Need Your Opinion:...

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House MD's Exec-Producer Gave Me a Jingle...

2011-04-27T23:52:00.000-07:00

I watched an episode of House that fired me up a week ago, so I wrote a little blog post. Little did I know that post would make its way around the interwebs so quickly, nor did I know it would cause such a commotion in the world of forums, Twitter and Facebook. But, when I got word of the buzz, I decided I wouldn't stop there. For me, stopping...

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Spinal Cord Stimulator: Psych Eval and Approval

2011-04-17T21:32:00.000-07:00

In order to get approved for the Spinal Cord Stimulator, as I mentioned before, I had to undergo a psychological evaluation. I went to the psychologist's office 2 weeks ago, went through the charade, and went home to wait. A week and a half later, I was notified that I passed the evaluation, and therefore would be allowed to continue on to the...

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House M.D. and Ehlers-Danlos Syndrome

2011-04-12T23:29:00.000-07:00

If any of you caught last night's episode of House on Fox you are probably as irritated as I am. The episode ended with a diagnosis of Ehlers-Danlos Syndrome, which under most circumstances would be an amazing thing. I am usually thrilled to pieces at the thought of EDS being mentioned on a mainstream show; we EDSers benefit highly from the public...

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Is that a Bullet Proof Vest or a Heating Pad?

2011-04-02T14:58:00.000-07:00

As you know, I am hoping to get the Spinal Cord Stimulator implanted soon, which will hopefully help the pain in my lower back and flank area. However; I have lots of pain in my upper back and neck area that won't be relieved by the SCS. Ehlers-Danlos Syndrome is to blame, of course. Lots of pain in the area is in the form of muscle spasms that...

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On with the Spinal Cord Stimulator and Off to the New POTS Doctor

2011-03-29T13:00:00.000-07:00

After hours upon hours of wracking my brain, scouring the internet, watching YouTube videos, talking with family and friends, emailing with people who've undergone the surgery (both positive and negative encounters) and reading all of your comments (thank you for the many responses via email and posts), I have decided to go forward with the Spinal...

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Q and A: Neurostimulators

2011-03-23T13:27:00.000-07:00

As you know from the last post, I am considering having a Spinal Cord Stimulator (SCS), aka neurostimulator, implanted in my back to help with my flank pain. After I researched the neurostimulator on my own, read the packet provided by my doctor about the device, trial period, and the surgery, and watched the video from St. Jude Medical, I was...

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I Need Your Opinion: Neurostimulator Implantation

2011-03-21T22:55:00.000-07:00

Hi, everyone! It has been a few months since my last post. There has been a lot going on; there was a death in the family, a new relationship, lots of doctors appointments and lots of flank pain. In addition, there has been a lot in the news, and everything in my life's been overwhelming and has been causing lots of anxiety. Needless to say, ...

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12 Days of Christmas, Chronic Illness Style!

2010-12-15T14:36:00.000-08:00

xo daniSubscribe to My Life with Ehlers-Danlos Syndrome by Email

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Lavender Calm and Tincture Healing

2010-12-04T11:10:00.000-08:00

Back when I had bronchitis in September and October, I was feeling pretty ill. Between the normal pain and being very sick, I was in bed for the majority of 7 weeks. I thought it was never going to end. I really didn't want to go to the doctors and have them try to give me antibiotics for a viral infection, nor did I want to waste my money and...

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Oxycontin, Trigger Point Injections, and the Bowels of the Earth

2010-12-03T17:53:00.000-08:00

Hope everyone is well and enjoying the start of December! Last week, I worked on getting a new patient appointment at a different pain management clinic, one where the doctors hopefully have better bedside manners than the one I saw a few weeks ago. Unfortunately, I got the call that I won't be able to get in for 2 months. I was all set to wait...

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Left Foot, Right Foot, Feet Feet Feet!

2010-12-02T14:15:00.000-08:00

Does anyone get foot twitching and spasms? For years I have been getting these awful foot spasms that are completely disabling, and I have no idea what to do about them. Sometimes they occur in my arch, sometimes in my toes, and sometimes both; everything balls up all at once and the worst stabbing and shooting pain immediately deadens me...

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