Ehlers-Danlos Syndrome

And the Pain Goes On

2008-05-28T00:19:00.000-07:00

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

Progression: Disease Degeneration and Group Growth

2007-03-28T01:35:00.000-07:00

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

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

2006-05-19T08:09:00.000-07:00

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

2006-05-03T20:16:00.000-07:00

Stephen Close up! 2006
posted by SJ via Hello

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

2006-01-23T23:07:00.000-08:00

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!!!

2006-01-23T22:42:00.000-08:00

2006-01-23T22:37:00.000-08:00

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

Local Meeting Held in St. Louis this Sunday!!

2005-11-10T22:08:00.000-08:00

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

2005-11-10T15:28:00.000-08:00

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

This Blog

2005-11-09T16:02:00.000-08:00

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

Ehlers-Danlos National Foundation

2005-11-06T07:59:00.000-08:00

Ehlers-Danlos National Foundation

Check out this site where you can view the blogs I posted on my other EDS site found at ednf.org. Here's a copy and above is a link to the main page on the ednf site. Go the to Recently posted Blogs Section and I'm usually there - otherwise you can do a search on the internal search engine for Stephen Bell and Blog and my - at times long winded - blogs should come up. Thanks for reading.
Stephen

Social Security Disability - Finally

2005-08-18T19:36:00.000-07:00

Well, it has finally happened, thank God! I received a letter today letting me know that I have a fully favorable decision by the ALJ (Administrative Law Judge) on my appeal attempt to receive Social Security Disability. Sigh. Finally. It is also retroactive to the first of my disability in 2003 which is also a relief. See!? It is not futile - it just takes patience and eventually these things do work themselves out! Of course, in my case, "working out" included the use of a great law firm that turned my initial denial of my claim into a rather speedy review and approval. If you need a good national social security law firm please let me know and I will put you in touch with Mr. Albret, Esq.

Peace,
SJB

Paperwork

2005-08-13T21:17:00.000-07:00

It's hard enough some days just getting up and going, but when adding all the doctors, meds, and related PAPERWORK things start to get really annoying. Trying to get one's disability information together is always a chore, but when you add multiple claims to multiple companies, not to mention the government for SSD, then it gets darn near to overwhelming sometimes. This isn't just a complaint blog day, mostly one that says to you, " stay on top of paperwork, don't let it rule you, but keep it up and going or it will swamp you " . Moral for the day. Now if I only would just listen to my own advice wouldn't life be sweet... :).
-SB

Up and Coming Meeting

2005-08-05T21:22:00.000-07:00

There's another meeting coming up for the local EDS Group in St. Louis (August 20th, 1pm). For more information contact me and I will fill you in!

EDS Hypermobility Commonalities

2005-01-29T23:41:00.000-08:00

Symptoms - Figure 1
Here is a great picture showing the kind of hypermobilities show up in EDS in joints such as the wrist, fingers, knees, etc.

Ehlers-Danlos Syndrome - About Ehlers-Danlos syndrome

2005-01-29T23:34:00.000-08:00

Ehlers-Danlos Syndrome - About Ehlers-Danlos syndrome

Just a quick note for you all to check out this website on EDS. It is great just like th EDS home page in EDNF.ORG is great, but some of the wording is different and some of the stats listed are a little different as well: all in all I think it just gives a bit more perspective on the same topics. Anyhow I think it is definitely worth checking out. I haven't read all of it - just the first few pages, but I definitely will be back!! Take care to you all!
- Perchik (EDS Classical Type with III Overlay).

2005-01-25T13:57:00.000-08:00

Best Friends are a great way to keep your spirits up even when you may be having a down time with your EDS. Thank you Susan! (www.skinnywhitechick.com).
posted by SJ via Hello

2005-01-25T12:52:00.000-08:00

Here is a cute picture of my mother, Rolanda. She too is a wonderful and amazing influence and inspiration in my life. She and my Dad have both taught me so much about living life and dealing with the ups and downs that come with it. I could never express the depth of our family's internal love - but trust me that it is a wonderful thing to behold. I love you Mom and Dad! Thanks for teaching me so many things about living happily in this crazy thing called life!
posted by SJ via Hello

2005-01-25T12:49:00.000-08:00

Here's a great picture of my dad, William. He's been a wonderful inspiration to me in my life and I love him dearly! We may not agree on everything, but the most amazing thing has happened as I have gotten older: he has definitely gotten more and more wise! What an amazing thing! :)
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A word on Rx (Perscriptions)

2005-01-23T03:15:00.000-08:00

Ok, since it is coming 'round to tax time I thought I would get a start on gathering my health expenses into one convenient little spot. Today I added my perscriptions to the spot. Well, I still need to gather January through April, but for April through December I believe I have set a new record. The value so far for all my scrips is just over $16,000. I am really glad to have my insurance - that goes without saying, and I paid much less than that out of pocket, but I just thought I'd share this for those others of you out there who have a love-hate relationship with your pharmacy too! It also highlights how much trouble anyone with EDS could be in in a short amount of time if stuck without health insurance or perscription coverage while trying to manage EDS and complications or other health problems. ><> Stephen

2005-01-22T18:35:00.000-08:00

Stephen Sending a Big Smile to you All!
posted by SJ via Hello

SSD - What an interesting and long ride...

2005-01-22T17:53:00.000-08:00

Well, I just received a letter today from the Social Security Disability people. After all these months of waiting it seems that they are, at least, not dismissing me outright. They want me to go and visit with one of their doctors in order to be evaluated - they don't know enough about my disease in order to make a decision. Go figure! Well, wish me luck!

Peace, Love, & ><>,
Stephen

EDS Group Meeting Today...

2004-11-06T20:48:00.000-08:00

Today was a really great day. Today was the regular meeting day of the St. Louis Regional EDS (EDNF "local group") education and support group. We always have a wonderful group of people that gather for these groups - but today was extra inspiring when our guest speaker, Alberto, gave us a new message (at least to me it was new!). The message was simply that we CAN do many things that are usually considered firmly in the "can not" column for folks with EDS. Not that training your body to have better strength, balance, awareness, etc. (no, I can't just reprint his entire talk - but how it hit me I can go into a bit - but it did give me new hope for the future. Today was also "gadgets" day where everyone brings in something that is helpful to them in dealing with EDS in everyday life - thanks to everyone for the great ideas from Shoes, to pillows, to finger braces (getto professor look and all!), to the nifty big, thick catalogues with a little bit of everything in them! I still think the message gloves were the the best next to the really pillow/bed sets :). Anyway, thanks again to everyone who comes to the meetings for making it a nice, safe place with familiar faces, understanding, tough love if needed and love love as a rule. Love to you all from Perchik and Raven!! More soon...

2004-11-04T18:07:00.000-08:00

For detailed further information visit: WWW.EDNF.ORG!!
posted by SJ via Hello

Cutis Laxia

2004-11-04T17:59:00.000-08:00

Cutis Laxia (i.e. loose skin) is also an EDS trait. My laxia is minor compared to others, but still present. On the thumb of the left hand you can also see some scarring from a minor papercut that failed to heal properly, became infected (despite antibiotics), and scarred an area about the size of a penny or so.

posted by SJ via Hello

2004-11-03T08:26:00.000-08:00

The joint hypermobility and slow healing, heavy scarring is a common mark of EDS Classical Type (Type I & II).
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Normally I wouldn't include random images

2004-11-02T21:27:00.001-08:00

Ceileigh the Cat: Companion feline the great! Normally I would not post random fun images from my life, but this one is imporant. I have been housebound for quite some time as a result of my EDS and other complications. With my wife working full time I have a lot of time to myself that I must fill in fulfilling and worthwhile ways. Some days, however, there is simply too much physical pain or limitation to get any of these things done. It can be very, very lonely. So, I adopted Ceili to help keep me company when I am alone. I was against the idea at first - but Anna convinced me to adopt him. I am very, very glad that I did. There have been many times when I very much needed a person in my life devoted to me (most of the time!). He came through. We laugh and play on the good days - and on my bad days he stands guard over me at the end of the bed. It is important to have friends - human and animals - I believe, IMHO, if you are going to get through your severe EDS disabilities with your sanity intact and your emotions healthily emoting away. So, everyone, again, meet my buddy Ceili Rain. - SJB
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2004-11-02T21:27:00.000-08:00

SJ and Fianceé Anna in 2003 (engagement pictures).
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Time for bed...

2004-11-02T21:24:00.000-08:00

It's time to take my meds and try to get some sleep. For those with EDS there are many obstacles to getting a good night's sleep. Joint dislocation, severe muscle spasms, bruxism, spinal subluxation, knee subluxation, general pain from all these and other sources, are just a few of the problems. In my case it takes some pretty heavy duty medications to help me get to sleep. I work on blocking the pain out by doing meditations and prayer with a good dose of a synthetic narcotic. A strong muscle relaxer helps calm the spasms and allow me to lie still long enough to sleep, and various other meds all contribute. It's not a perfect system, but it does work to an extent. It is different for every patient and what works today may not work tomorrow. One must adapt and do so often. A healthy and open, honest relationship with one's doctors makes this journey a lot less painful than it could be if the patient were to be left alone. I know that without my doctors, just as if I didn't have my family or Anna, I would not be able to do nearly as much as I can currently (even if that level of activity is still considered disabled). So hopefully, good night for tonight. If not, I'll be back to talk some more soon. (small grin). - SJ

Friends and Family are Vital

2004-11-02T21:12:00.000-08:00

My Fianceé Anna is a Godsend. She doesn't enable me in bad habits physically or mentally, but rather she helps me to see the good things in life even with a debilitating disase. She helps me to keep a positive outlook on my body despite the many scars I have from frail tissue tears or from minor injuries or infections that scar over after taking months upon months to heal. She also suggested my buddy Ceileigh Rain (the Cat). We rescued him from the shelter and now he helps keep me sane on those particularly dark days when the pain levels are high and all my friends and/or family are at work or can't be around to help distract me. He even guards my bed on those times when I absoutely have to just say, "ok" to the day, and head for bed to let the 'bad day' pass. His picture is posted up above this post.

Welcome to an in-depth look of living with Ehlers-Danlos Syndrome

2004-11-02T20:45:00.000-08:00

Welcome. First a caveat about the nature of this page. Ehlers-Danlos Syndrome aka Ehlers-Danlos Disease is a rare inherited connective tissue disorder that causes a disruption at the DNA level of the Collagen coding proteins that are essential for healthy skin, eyesite, joint stability, overall body strength, and any other aspect of the body, which is to say most all of it, that is affected by a weakening of the "glue", collagen, which holds the body and all it's parts, together. People suffering from EDS have a variety of symptoms beginning with Pain, arthritis, joint and disk instability, etc and can even lead to death via heart failure, orgain failure, and many other complications. I have Ehler Danlos Syndrome/Disease and will be quite up front and personal about the disease, it's effects on the body, as well as coping strategies, and other resources. Some pictures will be graphic in showing the deformation or malformations that can result from this disorder. There will be no nudity or other such nonsense on this blog - but some of the skin symptoms such as difficulty healing leading to large, hypertrophic scaring can be less than pleasing to the eye. It is also important to note that I have a very severe form of my specific classification of the disease. There are several different classifications of EDS: Type I, II, III, IV, and others. They are also known as Classic Type, Hypermobility Type, Vascular Type. I will include resources URLs in order to help you find more information on the other types. These four are the main types that are seen when this rare disease does become known as it runs through families - or as it shows up as an entirely new mutation within a family tree as more than 50% of new cases are known to be. This Blog, having said all of that, will concentrate on me, my daily struggles to deal with the disease. I will be frank with my problems and also with those things that go well. Triumphs and failures. It will all be here. I urge you to look at the Ehlers-Danlos National Foundation at www.ednf.org for more helpful, easy to read information regarding signs and symptoms to look for if you are worried that you or a loved one may have a type of EDS rather it be a very mild case or a very severe case. The best defense and hope, currently, against the future of someone who is diagnosed with EDS is an early diagnosis. While the life expectancy doesn't decresase very noticably for most types of EDS, the quality of life can vary drastically depending upon when the disease is caught and safety measures are taken to protect the delicate connective tissue as much as possible. One reason I am such a severe case is because I was not diagnosed until I was 20 years old - after many years of football, soccer, weight lifting, gymnastics, yoga, martial arts, and other high impact sports that have a high rate of injury wether it be many instances of microtrauma (Say a pitcher in a baseball team) or it be a football injury separating the collar bone or disoacting the shoulder and doing irreperable damage to the connecting tissue. Sadly surgery is usually contracticted in people with EDS. I found this out after three reconstructive surgeries on my shoulders each successively failed leaving me worse than I was before the surgery and after the injury. Not a happy picture to contemplate, but one that is all too common. I will try to also add levity to these blogs to help keep the macabre from getting out of hand, but the truth as it relates to me is my main focus. Hopefully others will be able to find understanding and even some knowledge that will help them lead a life with a higher quality level than is currecntly available to folks like me. Thank you for joining me. I look forward to hearing from you with any questions you may have and to posting more information here as my muse takes this in hand. God Bless You,
SJ Bell
remember: Ehlers-Danlos National Foundation (WWW.EDNF.ORG). Email me at: sjbell1203@charter.net