Where have you been???? - where are all the posts?

It seems in the transition all the posts are gone from the last year. Bummer.

I have been so wrapped up in getting the new website taken care of, as well as medical stuff, moving to a new city, and so many other things, that I didn't notice that the blog posts had disappeared for the last year!!! It was only after Cathy wrote me to ask why I hadn't been writing anymore. (Thanks Cathy!)

Oh well, so much amazing stuff. I will try to reconstruct it someday perhaps.

Let me catch you up.

It is July 25th. 2011.

Ok, you are caught up.

Seriously, we are FINALLY ready top unveil the new website! Yippee! Yahoo! Google! Oh sorry, got carried away.

It should be opened sometime this last week of July, 2011. We are just testing the store program to verify it works correctly. You might wonder why it took so long for this project?

Well, we originally tried to hire someone to do the job of re-writing the website. The site was originally written in MySql, database driven, stack upon stack of information. Basically meaning it was originally never intended to be as large as it turned out to be. We built a one story shack and kept on putting on additions without changing the foundation. Eventually that little shack became a skyscraper and it was leaning badly. It started crashing a lot due to hackers who found a lot of security holes. We knew we had to make some major changes.

The people we talked to looked at the size of the site and said they would not even touch it. Too big a job, too time consuming. We would have to do the majority of the work before they would get near it. I even tried a few colleges to see if they would take it on as a project. No dice.

In the end we had to bite the bullet and do it ourselves. My computer guy built the bones of a new site on weebly, setting up some of the basics for me, and then for the past six or eight months I have been re-writing a section at a time and moving it over there. We also have eliminated quite a few sections as you might have noticed (if you have been there already).

What we have attempted to do is streamline the website, make it solely about CRPS, information, education, and understanding the disease. we eliminated many of the sections that did not directly hit on CRPS itself since now there are hundreds of support websites out there that touch on these areas.

For some people the new website will be a shock, they are so used to the look of the old one. But we think they will get used to it quickly. It is far more easily navigated, information is easier to find, once you get used to the lay-out, and we believe it will be used by more medical professionals as well (especially the ones you send there), and that will help your cause a great deal, because it does look more professional.

So let us know what you think about the new website. Be kind, it took a great deal of work ;-)

It does get difficult to do such things when you are limited to working an hour here and there because of your pain, the amount of time you can sit, how much your eyes hurt that day, what your pain level is, how asleep you are, etc. You guys know what I mean since you also live through this every day.

So, enough on the new site.

What topics do you want to cover over the next couple of months? Send me an email and let's debate some.

Thanks for listening!

Peace, Keith

www.rsdhope.org

idle no more

Sorry for being so idle this year folks. I will be be back posting this week and get back being busy again here. We have been working on retooling the website and it has been keeping us very busy. It is getting a major overhaul and that isn't easy when you have a site with thousands of pages! Plus, because it is so busy we have been keeping it live during the overhaul so that has made it doubly hard.

But I have been neglecting this blog and that isn't good.

So updates are coming this week, June 23, 2010, promise!

Peace, keith

American RSDHope

Response to Robin - What specifically ...

Robin;

If you go through the blog it gives great detail as to the steps they took for the HBOT, it was pretty explicit I think, at least I tried to be, as to what they did each treatment. It is a fairly long and involved process and it changes every few treatments. In other words, your techs need to be able to adjust as you go along. It isn't set in stone the exact depth and so forth with CRPS patients because everyone is a little bit different. You may need to adjust a little up and down, the length of the time you need to take to achieve depth, to come back up, and of course the exact depth that works best for you.

Also, the exact depth you go to will change slightly depending on what treatment you are on. You start at one depth then that will change as you go along. That method seems to work the best. if you use the exact same depth the entire 20-40 dives, the likelihood of achieving much relief is pretty small.

What really concerned me about your comment though was your description of the therapist using, insisting, on the use of ice packs to treat the CRPS. If they KNOW you have CRPS and STILL insist on the use of ice packs, they do NOT know how to treat the disease and you need to find a new place to be treated. Not only can you do long-term damage to the protective sheaths surrounding your nerves, but you can accelerate the disease through the stages and/or cause it to spread.

Please go to our website and read the section on Physical Therapy and specifically the parts that discuss the use of ICE. PLEASE! ASAP

PHYSICAL THERAPY AND CRPS

If you have any further questions, feel free to email me directly at our website or at rsdhope@mail.org

Peace, Keith

American RSDHope

www.RSDHope.org

HOW DO YOU EXPLAIN THE EVERYDAY UPS AND DOWNS OF LIVING WITH CRPS / RSDS ?

How do you explain how everyday life impacts Complex Regional Pain Syndrome to your friends, family, co-workers, loved ones? How do you explain it to those people who you see far less often like the people who handle your Workman's Comp claim or Social Security Disability determination?

How do you even go about trying to get across to your boss, if you are fortunate enough to still be able to work, that due to the changes in the barometric pressure I can't come in this week? That it makes your pain worse? If you have even been able to share with them that you deal with pain everyday (I know some people are concerned if they share that they may lose their job and/or benefits).

Do you simply say "Sir, because the weather has gotten extremely cold this last week and the barometric pressure has been going up and down like a ride at a cheap amusement park my pain has been off the charts." And then hope they don't fire you when it turns into many, many days in a row?

Or how do you explain to your friends that you can't go out with them, again, because the weather has been so cold every night? They tell you to just put on a jacket and deal with it and you try to explain, again, that a jacket doesn't really help, that the cold affects your blood vessels and it is more than the cold it is the change in pressure and once your pain starts going up it is like trying to catch a train that has left the station. But you know your words fall on deaf ears.

How do you explain to that WC or SSD representative who filmed you coming out of the place you volunteer once a week, or the restaurant you just visited with friends, or maybe a ball game you went to with your kids, that now it will take you the rest of the night and the next day to recover from an event that "normal" people take for granted; and only if you take a few extra meds and make sure to do not much of anything during that rest time?

Or that the only reason you were able to handle that event in the first place was because you took your meds in the first place and made sure to get extra rest ahead of time and still knew you were going to pay the price in extra pain by going, but that having a disability doesn't mean you have to shut yourself off from every fun and enjoyable thing in the world. It just means you have to be smart about the choices you make.

No one can know what it is like, no one can truly understand, no one can make those judgements about you, not even those people who are paid to make them and really think they understand, unless they walk in your shoes.

We have an article on our website written by a former insurance adjustor who later ended up with CRPS. He writes how crushed he felt when he looked back on the judgements he made on people by only looking at snapshots of their lives without realizing the impact his decision had on them and how until you looked at the totality of their days and weeks you could not comprehend what it was like living with this disease, or many other chronic pain diseases.

If someone has a lot of time on their hands and wants to search for it, please do.

I don't remember the link off-hand, there are so many articles on the site :-D

So how then do we help our loved ones, friends, and co-workers understand that we are more than what they see? That it takes a great deal of effort to participate in the events we do attend and that what we need most is understanding and acceptance?

One of the polls American RSDHope took asked the question, "What one thing would you like your Family to know about RSD? The pool was taken way back in 1998 but I think the answers are pretty relevant still today;

SEE THE ANSWERS HERE

And then we asked "What one thing would you like the Public to know about RSD?"

SEE THE ANSWERS HERE

I think you will find the answers to these questions interesting and might want to share some with your family and friends.

Also, if you haven't read the "LETTER TO FAMILIES AND FRIENDS OF RSD/CRPS PATIENTS", or passed it on to your loved ones/friends, you might want to check it out. I haven't updated it in a few years and there are a few people on the internet who have tried to copy what I have done but this is the original :) It has been downloaded and/or forwarded almost 7,000 times already and who knows how many times it has been read. So it must be fairly helpful! If you have any suggestions on how to improve it, please pass them along and I may include them in the next edition.

BTW, there is an option on all of our webpages at the top left-hand corner to "refer this page to a friend", that sends the url of the page to whichever email address you like and lets you include a short note as well.

What else can you do?

If your boss knows about the disease and you think it might help, maybe you could sit down with him and give him/her a quick tour through the website, pointing out the basics; CRPS description, definition, signs, symptoms, etc. This way they might be more understanding when you do have those bad days and offer you options such as working out of your home, taking work home during bad weeks, or offering a more ergonomic work space, etc. Perhaps sharing some brochures with your office partners would be helpful? Maybe they would allow you to set up a CRPS information table at the next health expo your company hosts?

CRPS BROCHURES AND OTHER MATERIAL

There are always options if you are able to open a window of communications. I do realize though that sometimes you cannot share this information, that you may not feel your job would be safe if you did.

How do you improve understanding among your friends/family, besides sharing the website, friends/family letter? Again, share some brochures, maybe mail them to them or bring them by to lunch and take a quick minute to go over them. I have done that with some new friends and they were happy I did. They had no idea the disease was so involved and actually had it confused with Fibromyalgia. It also allows them to ask what they might otherwise had thought to be "stupid questions" or maybe even what they were worried might be embarrassing ones to you. This gives them a venue to do so. Let them know that they can always come to you with any question they have about the disease, a symptoms, or even if they think someone they know might have the disease.

I also try to explain to them what I have to do the day before and the day after a big event, such as going to a ballgame with them, including the extra pain I will be in by going, BUT making sure to add how I still go because I WANT to, I enjoy it and realize that there is a price to do so. That I would be in pain whether I go or not and that as long as I prepare my body before and take care of myself after, I can manage.

Look, a diabetic manages their disease and their life with their disease. Someone with arthritis does as well. If you lost a limb and were in a wheelchair because of it, you would have to make allowances as well. If you had a vision or hearing loss, you would make lifestyle adjustments.

Living with chronic pain requires adjustments to how you approach life. Unlike most other physical disabilities and diseases it usually requires constant adjustments, granted. And you may have to cancel events at the last minute, but if you manage your medications, your diet, your exercise, your mind, and your overall health you can have a real life; with friends, family, outside interests all involved and in an enjoyable way. It takes time to determine the proper balance and to get everyone on the same page but it is worth the work.

Life is too short to spend your life stuck at home. There are far too many wonderful experiences and people out there waiting for you to enjoy!

Just my two cents :)

Peace, Keith

American RSDHope

CRPS DOESN'T MEAN YOU HAVE TO STAY AT HOME

I wish to suggest that a man may be very industrious, and yet not spend his time well. There is no more fatal blunderer than he who consumes the greater part of his life getting his living. All great enterprises are self-supporting. The poet, for instance, must sustain his body by his poetry, as a steam planing-mill feeds its boilers with the shavings it makes. You must get your living by loving.

I often get the question, "Now that I have CRPS what am I supposed to do? I can't work anymore, I have most most of my friends, many of my family doesn't understand ... all I want to do is stay at home because I hurt so much and the less I do the less I am going to hurt more."

I do understand. Having had this disease for 3 1/2 decades now, as well as other forms of CP, I know all too well the social issues that go along with having a chronic disease enter your life;

1) Friends fall by the wayside as you are no longer able to do the fun things you used to do together.

2) Family members who may not take the time to learn about your disease may feel you are "letting your pain control your life", or even that you are exaggerating your pain. Especially when it comes to a disease like CRPS that is so little understood.

3) Many patients lose their home and/or much of their life's savings due to medical bills, lost wages, etc.

4) Struggles within the family unit as the stresses due to all of the above and the actual disease itself impact the family like an atom bomb going off.

It is easy, considering all of the above, to let yourself curl into a ball, hide in your home, stay on the couch, and hide from the world. But thinking that by doing so you will be in less pain, by avoiding any possible behavior that could increase your pain will only serve to further insulate yourself and could put you into a deep depression.

Your pain will be there, still be there, whether you leave your house or stay. Whether you venture out into the world or stay and watch ten hours of TV a day. So you have a choice;

1) Get involved somewhere, out there.

2) Stay in your cocoon and build more layers of protection, further separating yourself from life.

If you do venture out it is true, you will probably increase your pain somewhat, for a short time. But it may just improve your quality of life. So now you may ask, What is I can do? My pain doesn't allow me to do much of anything for any length of time? I can't work, I can't do the activities I used to do? What's left?

A good way to get back involved in the world is to volunteer. Volunteers are needed all over the country, the world. In every aspect of your community. Do you like animals? Volunteer at an animal shelter. Belong to a church? There are many opportunities there. Like working with kids or young adults? Talk to your local school or community center. Have business experience to share? Talk to your local Rotary Club or Community College.

There are some wonderful reasons why volunteering works for people with chronic illness;

1) You can almost always set your own hours, how much you work, how often, which days, etc. Volunteer as little as two hours a week or three days a week, whatever your pain will allow you to do.

2) You are able to work with the volunteer coordinator, explaining your disability and why you are limited in the time you can volunteer. They are used to working with the disabled and working around your limitations.

3) These types of organizations are extremely appreciative of any assistance you can provide.

4) It is a very rewarding experience.

5) It gives you a mini-vacation from your own pain.

6) It opens you up to a whole new group of people who don't know you as that "person with CRPS" but rather as that new volunteer with the great attitude. And usually the other volunteers are also very nice people with very positive outlooks.

All these thing combined help to give you a more positive spin on life in general, even if you are only there a few hours a week.

I volunteer, not only with American RSDHope but with a local organization. It isn't easy and it is only for a few hours a week. There are many weeks where the day after I volunteer I am in a great deal of pain. But even with the extra pain, it is worth it.

My parents always taught me; Gods gift to me was my life, my gift to God was what I did with it. Whatever your religious beliefs, man has a debt to his fellow man. And if if it helps you in the process? More the better!

peace to you this holiday season. May you start out the new year with a renewed sense of purpose!

Keith

American RSDHope

www.RSDHope.org

HOW TO COPE WITH CRPS / RSD ON A DAILY BASIS?

Hello Everyone!


Back to School time for many of you, either for yourself or your children/grandchildren means some added stress. Remember that that can also mean some additional CRPS pain, especially if you don't allow some extra down-time. Find some quiet times and some quiet corners during your day and evenings where you can be by yourself or at least where you can exert a increased level of control over the sound, noise, and vibrations and thereby reduce your pain or at least keep it from spilling over the top :)


Practicing these techniques and actively thinking about them each day can help you significantly. Try to make it part of your PCP; Pain Control Package;

1) DIET - Certain foods can make your pain better or worse, check out the chronic pain diet.

2) EXERCISE - especially aqua therapy in a warm water pool. The wrong types of PT an do a great deal of damage.

3) MEDICATION - The right combination of medication that addresses all your symptoms, just enough so you can function but not so much that you are sleepy.

4) ATTITUDE - How you approach your disease, how you decide to live with it, in spite of it, makes all the difference.

5) MEDICAL TEAM - Having a good physician, pharmacist, and for some, a psychiatrist, is very important in the management of the disease.

6) MANAGE YOUR ENVIRONMENT - This simply means BE AWARE of what in your house, workplace, friends home, etc. causes your pain to increase or decrease and adjust accordingly; A/C, fans, noise, dogs, children, TV, rest, neighbors, loved ones, stress, etc.

7) EDUCATE YOURSELF AND YOUR LOVED ONES - Use sites like American RSDHope and the RSDSA to learn about the disease. Arm yourself with the correct information and beware of sites with outdated and incorrect info.

The bottom line is that even though CRPS is ranked as the most painful form of chronic pain that exists today, if managed well, CRPS isn't a death sentence, don't live your life like it is.

NEW ARTICLES

For those of you who are new to the website, we don't normally send out many bulletins. People pretty much know where to look on the website for the latest additions to the website. We have MEDICAL ARTICLES sections, COPING WITH PAIN ARTICLES sections, etc. Inside those are many, many sub-sections and hundreds upon hundreds of articles with some of the latest information including the source URL's.

We put some of the new articles in the WHAT'S NEW section at the top of the website but not all so be sure to check into your favorite sections at least once a month or every couple of weeks. If you come across a chronic pain or CRPS article you believe fits on the website please email it to RSDHope@mail.org for consideration.

We also have very popular sections on Poetry by CRPS patients, humor sections and more. if you have submissions for those sections please send it to the same place :)

We have an on-line catalog where you can buy CRPS/RSD Awareness items with the profit going to American RSDHope's awareness programs or to sustain our organization. We have everything from T-shirts and sweatshirts with the national CRPS/RSD Awareness ribbon on them to national awareness bracelets and the national CRPS/RSD Awareness ribbon magnets for your car, and much more. Just pop by the website and you will find the link at the top of the page.

www.RSDHope.org



MENTOR PROGRAM

Our Mentor program is always looking for new Mentors. It is one of our busiest programs and if you are interested in helping your fellow pain patients, drop Karen and/or Lynne an email RSDHope@roadrunner.com

You can read more about the Mentor program on the website :)


ROCHESTER, NEW YORK - PHYSICAL THERAPIST

If anyone lives in the Rochester, NY area we have a patient who is searching for a Physical Therapist in the area who has a very good knowledge of CRPS and how to treat it. As we all know there is a world of difference between someone who knows how to treat CRPS and someone who doesn't. Far too many patients have been advance through the stages of CRPS by incorrect physical therapy; such as the use of ice, ice packs, hot/cold contrast therapy, etc. The damage to the nerves becomes so extensive the patient not only has their pain worsen but many times it spreads as well.

So if you happen to know of a CRPS-experienced physical therapist in the Rochester, NY area, please send an email with their information to RSDHope@mail.org and I will pass it on to them.

QUESTIONS ON MEDICATIONS, NERVE BLOCKS, TREATMENTS, etc.

We get lots of emails from patients concerning which medications they should be taking, what nerve blocks they should try and when, which treatments help, don't help, questions concerning physical therapy, etc. While we enjoy hearing from everyone most of the questions we get have been answered in great detail on the website and so we usually end up referring people back to the website.

The information there has been gone over by physicians, checked, re-checked, and is the most up-to-date available. We also tried to put it in very understandable language. Sometimes these things are written so only those with Phd's can understand them, which is fine if you have one but if you don't you are SOL.

There are separate sections on the website for everything from Drug Therapies to Nerve Blocks, CRPS Descriptions to Stages, to the latest articles on everything from Medication to those standing strong in the struggle. Need a boost? Check out the Poetry section. Need a laugh? Check out the humor section.

Information regarding this disease has come a longer way and we are blessed in that we patients and loved ones can educate ourselves a hundred times over what used to be possible. Take advantage of it.

So always check the website first. Use the Search box if you aren't sure where to look or use the link at the top of the website (navigating the website). You will learn your way around pretty quickly. You can send any page on the site via email to your friends and family as well. Doing it this way saves you time and you can get more concise answers.

American RSDHope

But don't forget to drop us a line once in a while too. It gets cold and lonely up in Maine in the winter time!


SUPPORT GROUPS

We have been getting a lot of emails from people wanting to start a local support group and not sure how to go about doing it. Having worked with a local group for about a year now I can tell you first hand it isn't an easy thing even if you have a great group of eager individuals. It takes a key group of dedicated people to get it off the ground and then to keep it going.

So, we need some of the long-lasting groups out there to send us your suggestions; what have you done to keep your meetings interesting? To keep your members coming every month, or other month? How did you get your group started and what would you recommend yo someone else who is just starting? What mistakes did you make they should avoid? What special events have you held that were successful? What else would you care to share?

Send these tips to RSDHope@mail.org and we will place the best ones on the website in the Support Group area for all to enjoy and benefit from! Thanks everyone!

That's it for now!

Thank you,

Have a wonderful day everyone! Thanks for visiting American RSDHope and for all of your kind emails, post cards, and letters and of course, your very generous donations. We survive on your donations, they keep us going and help us to provide our information to the thousands who visit our website every month! Eleven Million hits and counting!

You can make your donations directly to the website American RSDHope

All tax deductible of course!

Peace;

Keith, Karen, and Lynne!

American RSDHope

www.RSDHope.org

NOVEMBER IS NATIONAL CRPS/RSD AWARENESS MONTH

JUST A REMINDER !!!

SEPTEMBER IS PAIN AWARENESS MONTH

September is Pain Awareness Month and the American Pain Foundation is asking everyone to help spread awareness by signing a petition.

Here is a quote from the text on their website;

" In recognition of September as Pain Awareness Month, the American Pain Foundation (APF) announces the launch of the Conquering Pain Together project (www.conqueringpaintogether.org). “Conquering Pain Together” is an exciting new public awareness campaign that will be the focus of our efforts during the month of September—there are ways forEVERYONE to contribute to this campaign! Professional presentations and community events are planned in communities throughout the country to highlight the need for improved access to appropriate and effective pain care. The Conquering Pain Together site directs visitors to an online “I COMMIT” petition (don’t wait, sign on NOW!) and features a list of planned local activities to bring the topic of pain to the forefront. The site also includes an easy-to-use toolkit with materials to raise awareness about pain issues in communities and information about what YOU can do for the first-ever National Day of Action scheduled for September 26th. WE ENCOURAGE YOU TO TAKE ACTION AND JOIN THE MOVEMENT. "

If you visit the American Pain Foundation website you will see the story on September being Pain Awareness month and the link to the Petition. Pass it along to your friends!

In other news, we just sent out a little news bulletin, not really a newsletter just a few simple thoughts we wanted to pass along. I will share some of them in the next blog, which I will publish in a few minutes, in the hope that they will help some of you.

Peace,

Keith

American RSDHope