Communications

Unfortunately, we just discovered persons were posting “comments” on our pages. Pages will not alert us that you are asking for help. If there is a form on the page (such as the chat sign up on http://www.rcdom.org/chat) you can reach us through these.

The page comments function has now been deactivated. You may still post comments on articles such as this, but please try to keep to the topic. If you are needing to reach us there are many ways to do so but “public at rcdom.org” email is often times the best way to reach us.

Chat Schedule Annoucement

Chat

As some know for some time we’ve run Saturday chats (Sunday for our Aussies and Kiwi’s who come in) for a few years.

Well officially, this week we have started our split chat. Where we have 1 hour that is European friendly, and 1 hour that is Australian/New Zealand friendly. This will allow our administrators to only need to do 1 hour blocks as 2 hours has started to fatigue some of our longer standing members. Lets face it. This monster doesn’t even give us enough spoons for 2 hour chats.

So at 6 PM UK time (yes, it will fluctuate based on the UK time zone and how they deal with daylight savings times) which for us Americans will be around noon. And again at 7 PM CST to accommodate our family on the other side of the globe which also seems to be the best time for members of our current chat to pop in.

Now our chat site has also changed, so please be aware you will want to go to http://rcdom.slack.com to join chat. The issue is that our chat now requires invitation, so you will need to fill out the form on http://www.rcdom.org/chat to be added to the list. The official chats will be at those times, but the moderators always have access to this so responses may come before chat and not during the set times.

If you are considering attending, you will want to try to do this before chat time on Saturdays to avoid your request being missed.

Be Like Bill…..

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This is Bill.
Bill isn’t part of the CRPS community but he told that his Aunt had CRPS.
Instead of judging her for her sudden inability to join family functions he is empathetic.
He calls his Aunt and asks how he can help.
He asks her questions about her condition. He makes others aware of CRPS.
Bill is helping and making a change.
Please Be Like Bill!
Please share awareness of CRPS.
No Judgement! No Hate!

Just Hope!

I am a Liar

Liar

Liar

I am a liar…

In day-to-day life there are so many roles we have to play. For me these are wife, daughter, sister, aunt, niece, employee, advocate and one I feel is a “dark mark”, patient.

Most of these roles depend on me falling into parameters and meeting obligations. I must do what I have to in order to fulfill my roles in life.

But I sometimes can’t.

 

I am a Liar….

I lie to myself, I lie to my boss, I lie to my parents, I lie to my family.

I lie…..

I tell myself that I can do it all alone.

I tell myself that no one cares about my problems, that no one will be able to handle them and be there for me. I tell myself that my parents and my family are too burdened with me and they would be better off without me. I tell myself that my husband would be more successful and happier without me around to bug him.

I tell myself that my friends would have more fun, and do greater and better things without me. I tell myself that my boss would be better served by an employee with a better skill set than mine.

I lie…..

I tell myself if I only would shut my mouth and be submissive people would like me more.

I tell myself not to complain so much because my problems aren’t important and my pain will not be empathized with.

I lie….

I tell myself that I am unworthy of love.

I tell myself I am unworthy of growth, professionally and personally.

I tell myself that I deserve the pain that I am going through.

I lie…

I tell myself that some unknown sin or past ill deed is why I am in this situation, that I am to blame for all my trouble and every tear on my pillow will not pay the price for my past.

I lie….

I lie because the truth is so hard to face.

 

In truth..

My Husband loves me dearly. He calls me beautiful and holds me when I feel weak.

In truth….

My Mom loves me more than the sun, the moon and the stars combined.

In truth….

I still have my Dad wrapped around my little finger at 28.

In truth…

My Friends are loving caring people who truly care, who drop whatever they are doing to talk on the phone and always seem to have some heartfelt advice to share.

In truth…

I rock at my job.

In truth…

I am loud and boisterous. I speak my mind. I laugh too loud and cry too often. I wear my heart on my sleeve. I feel deeply.

I love. I cherish. I empathize.

 

But yet I lie….

 

I lie because at some time or another we forget our worth.

We stray from seeing life as a miracle and start seeing it as a curse.

Less like heaven and more like hell.

I cannot put into words exactly why that is, because it is different for all.

For me, my self-worth has always been contingent upon how I think the world sees me.

 

In truth…

I am a miracle.

In truth…

I am blessed

In truth…

I did nothing that caused me to get CRPS.

In truth…

I am worthy.

 

My name is Christa Whightsel.

I am a recovering Liar.

It has been an hour since my last lie.

I will lie and I will tell the truth.

But I will not allow the lie to become the truth.

Update your bookmark

UPDATE NOTICE:

As some may have already noticed, we have had an update to the site to make it easier to type, RCDOM.org.

But some sites and links are still pointing to our old domain address. I’ll attempt to contact those I can find, but for those users who have it bookmarked I wanted to make sure we tried to update you about this change.

We’ll be sending out a second notice the day before it cancels, to make sure you’re reminded a second time before your links go silent.

Happy New Year

RSDAngelStrong

May the 2015 year bring you many new and wonderful opportunities to share your joy with friends and family. Take every chance to fly high with making every moment the best it can be. Don’t give up when things get rough. If you’re having a hard day, reach out to your fellow sisters and brothers in pain. We want you to be with us to bring in 2016!

Volunteer Opportunities Opening Up

Pain Family Tree

Want to volunteer? Don’t know how or where?

As we grow and service more and more of the community we have found ourselves with more who want to help others or find a way to make a difference.  As such, we are going to be launching a page for people to sign up to volunteer through by the end of the year. We will have a list of items that we currently provide and opportunities for you to add ideas of what we could add to the team with your help.

Offering a Helping Hand
Offer a Helping Hand by Volunteering an Hour a Week

For example, you can volunteer your time writing articles, researching new treatments. If you are comfortable with writing you can help with sharing the anonymous “RSD Angel” posts for the community to answer. Or if you enjoy creating artworks, you can volunteer your time doing that. And if there is something you think you bring to the table that we are lacking, you can suggest it to us, and help us with that instead.

So if you are interested in helping RCDOM, please start thinking about what you would like to do and how much you’d like to be involved (how many hours a week you’d like to donate). Even one hour a week by 40 people can make a world of difference for other patients who fight this same battle.

Pain Family Tree
If we volunteer just a little time, with every root our pain family tree can go grow stronger.

There will be rules and guidelines we all must follow, but with any group that stands the test of time you will find these. So with that in mind, know you are always welcome to bring discussions and ideas to the table, but ultimately, we work as a team for one goal: To help the fellow global pain community have a chance for answers, inspiration, and hope.

You can help us grow and make us better, all you have to do is put in a little bit of your time. We don’t ask for a lot, just a bit of dedication. (Please know other obligations such as other support groups run by you or with your assistance should never go without you. This is meant to be a community effort with many roots to help hold up the tree.)

Sign up for volunteering here.

 

Meet the Staff!

February 5, 2014

RSD/CRPS is the most painful rated disorder on the McGill Pain Scale Index, a little gem of knowledge I am sure you never forget! Sometimes it is hard to remember the other people without our condition who also suffer a great deal. I find I become so drawn into my own pain that I often miss things happening around me. I may miss the first bloom of spring or maybe a child crying because they have lost their parent. No matter how “significant” we perceive the item we missed, it may be the world to someone else. This is why it is important to make sure we also take a minute to look at the world around us.

The admin team at CPRS/RSD Doesn’t Own Me is a family in itself, with our own trials and tribulations. There are times we share the information publicly and other times we feel it would pull away from the importance of support we provide for our members. Despite these choices, we feel that you the members need to know who we are. We want to share a part of our lives with you. Every person on the admin team survives with a debilitating chronic pain condition! Many of us survive the roller coaster we call RSD/CRPS. We have our highs and lows, and days when we must step back to take care of ourselves so that we can be here to take care of you.

Over the coming weeks, we will feature different people from the admin team and some small facts about us. We volunteer our time and spoons to you and want you to feel you know who we are and what we are here to do! Please watch the Facebook page starting today to see our admins highlighted in all of their glory sharing a piece of their soul reaching out to all of you! You are the reason we do this! Never forget how important you are to us all!

Holiday Cheer

Happy Holiday wishes

I want to wish a Happy Holiday to the RSD family. I need to apologize to any of you who follow my Facebook posts and blogs which have become very irregular. You are probably aware that I have been busy with appointments with various specialists. Some days I have to check to make sure I have not turned into Raggedy Ann. My posts have been more sporadic as I get passed from specialist to specialist for more testing in an attempt for the doctors to give me a diagnosis they understand and can treat. At this point I am still unable to find a doctor specializing in RSD to treat me. I have to find new doctors to replace those that no longer want to treat me. A new round of tests begin when I find a new doctor. This last month I became so ill that my mother was not only taking care of me 24 hours a day, but she also had to provide transportation to the 40 hours a week of doctors appointments. I feel like she got a glimpse of what it is like to be in my shoes! I have now added guilt to my list of complaints, now I was robbing her of her independent life too! I remain with my caregivers (parents) as I do my best to successfully make it through this holiday season and have enjoyable memories to look back on. I have decided to use the next few weeks to let my body rest and recover from the constant bombardment of tests and treatments that have been hurled at my poor abused body in the past few weeks. It is my hope that during this holiday season my body will calm down and heal some of its wounds. With rest and recovery I will hopefully be able to communicate more effectively. I am planning to try to keep active; I do not want to lose the progress I have made but I need to remember to appropriately pace myself. 

We come from many backgrounds and have many different ways we celebrate the holiday traditions that we partake in. We need to take a break to care for ourselves so we can enjoy these times and traditions we share with friends and family. Our body needs this quiet time to rest and recover. This can be difficult because family members that do not always know what RSD does to us and are unable to relate with us. You need to make yourself a priority! Make sure that the preparations you make will allow you to enjoy this holiday time with those you love. When you go visiting prepare an “emergency bag” that has your essentials. This survival kit may include medications, iPod, ear plugs, a specific blanket or whatever you need for you. If you are traveling with medication remember to use a lock on the zipper, especially if you are going to be visiting people with children and pets. Keep your drugs locked at all times, you do not want an accident to happen because a curious pet or child thought it was candy. If you are traveling make sure you pack at least 1 week of medication in your carry on. Lost medicines equals increased stress levels.

 

 

I am wishing you the strength you need to have the holiday that will fulfill your childhood dreams. I am praying that our army of angels will help lift you to your feet when your wings are having trouble to fly. May you and your families enjoy a safe and joyous Christmas and New Year.

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