Wednesday, May 28, 2008

And the Pain Goes On

I fell. Plain and Simple.

I was trying to stand up off of a couch and my knees didn't work and so I toppled over to the side and half on my wife and half on hard surfaces. Subluxed my right shoulder and boy did I yell on this one. Probably scared the neighbors. I couldn't even use the arm for a while. The funny thing is that I had breakthrough pain relief med in my mouth dissolving and so it shouldn't have hurt so much - so that makes it even more scary because what would it have felt like without the pain relief already in motion. I don't like to cry from pain but I managed to on this one. I recovered my dignity quickly, but hombre, for those few minutes until everything was back into place...it was bad. Even a small manly scream escaped me on this one....

Man what a night. I just can't wait to see what the next three days hold in store as the damage starts to REALLY manifest itself now that the initial event is out of the way. Oh boy. Good energy sent my way and prayers are always appreciated all the time, but especially over these next few days as I heal.

Thanks for letting me vent.

Love to you all,

-sjb

Wednesday, March 28, 2007

Progression: Disease Degeneration and Group Growth

So there are some good and bad things to report this blog time. If you see the time stamp I'm not really sleeping so much tonight so I'm spending a little time on the computer writing. I've missed writing so this is a nice outlet. Unfortunately the first bit of bad news is that the EDS in me has been progressing. I am not helpless or anything like that, but there have been some emotional and physical craziness as the dislocations continue and the pain levels are literally a pain. I have however found some help from my Church, which is wonderful, in a way to deal with the pain on top of the pharmacological approach. Thanks to my Father J. for the help.

The good news is that the local EDNF group has had some nicely successful meetings recently and I hope that the trend will continue. It is nice to be part of a support group that has a lot of people (in my world three or four people is a lot) working together to the best of their abilities to make their lives better in as many ways as possible. The feeling of being alone is suppressed and a feeling of control in one's life is increased. No, it's not a cure, but the emotional support of having others like you meeting with you and helping you to take care of yourself mind, body, and spirit is a great thing. The local group brought in some great speakers the last meeting and that is exciting in itself. I think the group learned a lot from these guys and gals. Hopefully any future speakers will be just as, of dare I say even more!, helpful to the prople who drive from many hours away to spend these few hours together once a month. That is a good thing for us: the group has been steadily gaining more interest from EDSers or possible EDSers from the region and they are becoming more active - if in no other way than to show up and give an opinion and story or two, or two even just be an email member who talks to the rest of us by their email stories and ideas and opinions. Regardless it is wonderful to watch the group support itself and continue to grow through its work investing in itself.
Ok, I know that was more than a bit wordy, but it is late and while I am not medicated, I am tired! I recently started a new treatment and dropped another and that is helping me so far with my energy levels which were at 0 - I was just sitting in bed watching life pass me by - now I am able to at least get up in bed and maybe even get around the house - if things stay stable here's to even being able to get up and around and out of the house for more than just very urgent or emergent happenings!
Strength and love to you all! Keep the emails and calls coming as we all share our EDS lives with one another and in deeper levels with ourselves as we learn from one another!
-sjb

Friday, May 19, 2006

The Ehlers-Danlos National Foundation - Chronic Pain is a Manifestation of the Ehlers�Danlos Syndrome

The Ehlers-Danlos National Foundation - Chronic Pain is a Manifestation of the Ehlers�Danlos Syndrome

Wednesday, May 03, 2006


Stephen Close up! 2006
posted by SJ via Hello

Monday, January 23, 2006

We're Married! Presenting Mr. and Mrs. Stephen and Anna Bell!!!

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Rich and Barb: 40 Years of Wonderfully happy marriage, EDS present thorugh it all: a shining example to us all that happiness is there-take it!!!

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Stephen With a big smile at mini golf.Some days just can be fun. Remember that!
posted by SJ via Hello

Thursday, November 10, 2005

Local Meeting Held in St. Louis this Sunday!!

There will be a meeting of the EDNF Local Connection this Sunday. Please bring family and friends and food! We will have a small bar area for serving food and we will work on community building actiivties as well as some short business topics. We will welcome some new members and welcome back our old friends as well. Many thanks to Anna Korn for coming up with this most excellent meeting place. Email Stephen or call for more information if needed. Mapquest seems to have an accurate map of how to get here from Il at least if the emailed address is used for the destination. The Village is a closed, gated community so there will be signs directing you on how to proced to get into the welcome area and to pass the security checkpoint unmolested! :) I look forward to seeing all of you there! Especially our neweset recruit Katie!
Yours,
Stephen

Awakening and Growth

Hello all. There is a great set of retreats coming up that I am very excited about called Awakening and Growth. They are in St. Louis and are sponsered by the Washington University Catholic Student Center. However, it doesn't matter if you are religious or not, the retreats are open to everyone and are not attempts at conversion or anything like that. So this the weekend after next both Anna (my fiance) and I will be traveling into the countryside outside of Saint Louis to attend: she on Awakening and me on Growth. The purpose of the retreat is to learn to accept love into your life. Not just from those close to you, but from all sources that surround you. Learning to let love in can be a hard lesson to learn and so several super concentrated days are spent delving into oneself, one's Faith as it is/or isn't, and one's heart to try to learn how to accept love into one's life. It is a wonderful experience ( I went through it last year). If you are ever move to or are living in the St. Louis area I highly recommend that you consider going on a retreat like this if not this very one. Just get in touch with me and I will hook you up! Talk to me! It is designed for 18-30 year olds (as is the second retreat, Growth).

Now, I will be going on Growth. This retreat is linked loosley to the Awakening
retreat. Where Awakening is based upon learning to be loved and to let love into one's life, Growth is about learning to become love and to express it in all aspects of one's life. It is really a completely different journey and is a journey that calls for much self examination and concentration on self, faith if present and important to you, and one's heart and its use. Growth uses the Awakening retreat as a pool of people to begin to learn to love and serve as the lessons are expanded upon to encomass all people around us everywhere in society and the world. I don't know to many other details because I have never been on the retreat, but service and love are the main themes as far as I can tell.

It really looks to be a very intense but wonderful weekend for us both. I may not particularly like sleeping on the floor (having EDS makes things like that rather uncomfortable, but with my meds and determination I will try to let go of the physical limitations, discomforts, and distractions and concentrate as much as possible on my introverted discoveries and studies and extroverted loving expressions). When I went on Awakenings the communal living did not bother me but with EDS I do need enough sleep and that is in short supply on the retreats and the furnishings are very sparse and it is cold this time of year so the painful moments tend to be more pronounced with excess cold and hardness of floors,chairs, etc. plus there will be long times spent on our feet, not to mention time spent kneeling (not so much here!) and sitting on floors. All in all it is not the most physically desirable environment for me with EDS but it is something that I know I will be able to deal with if I really work on distracting myself from my physical pain and also in accepting the assistance that others offer me (putting aside my pride and actually accepting the assistance is something that I have had to work on...and continue to work on - I like doing things myself unless I absolutely can't do it! Can you relate?

I will, as ususal, temporarily lose those parts of my body that I use the most and will have to recover for several days after all the excertions, but I think the learning of self and others, and overall growth will not only benifit my mind, but will also help me to cope better with my EDS by having a stronger connection between my mind, heart, and spirit. In my case the strengthening of my faith will also be a big plus for my dealing with EDS and its many effects in my life. The new coping options of distraction, service to others, and relying on faith and active and applied love in life with help me to have the other options besides the often present depression, anger, and other negative emotions that come with my dealing with EDS.

The point of sharing all of this with all of you is because by building strength in my mind and spirit I have been able to better cope with EDS. Instead of useless frustration or anger I have been able learn to better direct my feelings to the support and service and even love of other people. It is a good way to feel good about yourself and also the effort involved and the strength gained can help to distract you from your situation, your pain, whatever it is that is ailing you at that particular time. I know sometimes the list of ailments is quite long, but with work I have found that I can, for at least short periods of time at this point in my life and growth, distract myself from the frustration and pain and put my energy into more positive activities. I hope this gives you all some kind of ideas about things you can do, I realize this is mostly in the abstract, but I hope it can help alleviate your negative emotions, thoughts, and even physical pain by diverting yourself into the love and acceptance of self, the love and service of others, and ultimately in the love and service to yourself.

Thanks for listening, and, as always, I look forward to hearing back from all of you with ideas, feedback, stories, ... everything! Take care, peace and love to you all, ><>

Stephen Jacob

Wednesday, November 09, 2005

This Blog

This is just to let you know, if you are new to this blog, that there are several blogs that my attention is spread out across so you may find long gaps in time between posts. But if you are looking at this particular blog be sure to go back to the beginning where you will find more information specificaly about EDS and not about my whims of family, friends, cats, etc. :) Also check out my (and others') EDNF Blogs that are just about EDS and living with it located at the Ehlers Danlos National Foundation Web Site . Just wanted to let you know what's up with this blog. Take care and stay in touch. Love to you all.
Stephen