FredFriend

Welcome ToebeanS!
I hope that you look around the site and explore all of the great resources, references and blogs that are housed here. It is an amazingly supportive and informative group.
Hope to run into you again here soon.
FredFriend

Welcome Snow,

I too have Hypermobility Type Ehlers-Danlos syndrome.

Finding the joy in each moment and my mantra “Keep moving forward” are at the top of my list of how to cope with the torturous pain. In some ways aging has made it worse and in others I think aging makes it better.

As I age (I’m over 50) I’m less fearful and less guarded so the…[Read more]

BD,
I’ve enjoyed your updates from the dock and am sorry to learn that the dock drama sucked you in such that you are suffering for it. I think you are coping beautifully and adapting to the changes around you as well as within yourself.

Living for Right Now is the thing that so many proponents of meditation and CBT are extolling as the primary…[Read more]

Hello MDMC and welcome to the discussions. Sounds like you have a good plan going. I include DARK chocolate in my pain management toolbox because of the many health benefits. A square or too in the late morning and/or early afternoon is a great way to inject a few moments of pleasure to distract from the pain. It is believed to be a natural…[Read more]

I find that communication with my partner is key to heading off misunderstandings. I fight to overcome my tendency to go quiet when in pain AND when something is bothering me. A few years ago we scheduled a sit down meeting to come up with mutually agreeable “rules of engagement” around things that bug us. A big thing was that when I “hermitized”…[Read more]

I agree, Noki. It is almost like we are trying to get away from the pain that is chasing us. As long as we are moving forward we keep it at bay. As soon as we stop (by choice or not) that stiffness and pain sets in making it more difficult to get back in front of it.
Happy walking!

Dear FortunateOne,
You really have a lot going on and have done a wonderful job of writing it all down to look at as a big picture. I hope you have shared that list with your doctor to consider. With so much going on in so many parts of your body it sounds like there are some nerve stimulation messages that are not getting through.

What does…[Read more]

Wow! Miss Kitty, you really are a great help for BD. I hope he understands and appreciates all of your hard work. You have very beautiful colors in your fur. It would be lovely to see more photos of you and your favorite spots on the boat.

When I was unable to walk on land I discovered that I could walk in the pool. In the summer it is easy to pop next door to my neighbors’ house and spend 30 minutes walking around their pool. Just making laps around the perimeter with the varying depths. Very soothing as well as being exercise. Still haven’t found an affordable indoor pool for…[Read more]

Keep moving forward! That is my mantra. One step in front of the other since walking is the most accessible exercise. Wearing a pedometer full time makes it possible track those steps between the bedroom and the kitchen or bathroom as well as the ‘exercise’ or ‘workout’ steps. One of my biggest excuses used to be that the actual movement of…[Read more]

December and January is that time of year when people of many different faiths celebrate. So many opportunities to join groups in houses of worship. I just want to say that it is okay to go and okay to skip. Just make sure your physical comfort/support is addressed to keep your pain managed while pursuing your spiritual needs of community and…[Read more]

Here is a link to the Defense & Veterans Center for Integrative Pain Management. It is an excellent model that isn’t widely available in the civilian healthcare systems. Maybe this will be so successful that civilian systems will be clamoring to offer Integrative care as a matter of course.

http://www.dvcipm.org

A couple of months ago I had the honor of being the bedside advocate for a friend with MS. While she was in the hospital for 4 weeks I joined family members and other friends in rotating shifts to make sure that she had her communication tools available because she had long since lost the ability to vocalize. She used eye movements to look at…[Read more]

BD and Noki,
I am so sorry for your loss. It is so hard to lose a close friend/family member. I was really touched by your words, BD, “She won her fight. She no longer hurts. She is free. She isn’t gone. She’d here in my heart, here on my shoulder,”

What a great tribute.

Artificial food coloring is a trigger that I’ve been pretty good at avoiding. Artificial sweeteners is another trigger that many people overlook. No matter which artificial sweetener it is, I feel like I’ve been smacked in the head within 15 minutes of ingesting it. Then the nausea comes on and I find myself with an overwhelming headache…[Read more]