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.

Maria – RSD Changes Everything, Even our Shoes

RSD Angel Express Newsletter

I’m Maria; I’m a wife and mother, fashionista and shoe enthusiast.  Not all of my days are bad, but no one knows about the really bad days because I hide them. Often, I feel like my CRPS has stolen my sense of self. I have a great doctor and on my good days I really enjoy life. My family knows what my battle with CRPS is like, but no one else really has a clue, until now.

I have Complex Regional Pain Syndrome CRPS. This is #myinvisiblefight.

When I worked for a school district, I  prided myself in my dress. I identified my inner self with sense of style and always being well put together. I owned stylish clothes, a mountain of shoes with cute heels; wedges, stilettos, strappy shoes, mules and all in different colors. I adore shoes. I love jewelry and always accessorized and coordinated my outfits with my jewelry. I could never wait for pay day!loved browsing my favorite local boutique and more often than not would pick up a new set. I wore my makeup tastefully to highlight my eyes and hair. I loved dolling  myself up everyday so that no matter what the situation, I felt like I was ready to tackle anything.

When I was diagnosed with CRPS in April of 2010, I was not prepared for the life changes ahead of me.

CRPS is the most pain neurologic disease that can be diagnosed. On the McGill pain scale, CRPS is listed above a first birth, kidney stones and having an amputation. This is daily pain, inflammation, and swelling that never lets up. It is always there. The symptoms never subside completely. CRPS typically occurs after an injury or surgery, although spontaneous cases have been reported.

CRPS is a non-discriminatory disease.

The sympathetic nervous system runs through the nervous system, the bones and all the organs. It puts the body in constant “fight or flight” mode so swallowing; digesting food and even the resting heart rate can be affected.
The first things that begin to happen to my body were severe allodynia, or extreme sensitivity to the lightest touch. Even the air from a ceiling fan would cause extreme sensations and pain. I had to change what clothing I wore, some fabrics were simply to harsh and uncomfortable and painful on my skin.  I went from tailored clothes to loose fitting because of the extreme sensitivity.

I did not yet know right away but CRPS was affecting my legs, it had started in my upper torso. My cute shoes turned into flat loafers and I could barely walk by the end of my work day. Still, I had to fulfill my contract through the first week of June with the school district. So on I carried, in my flat loafers as best I could, until summer break.

I spent the entire summer having tests run, and by the first week of August it was official that the CRPS  had spread and the symptoms continued to progress. It became painfully obvious that I would not be able to return to work. Within months I became homeboundand unable to drive.

Here is what I want you know about my invisible illness:

  • I don’t ever go out without makeup and a cute maxi dress or capris and cute shirt. I may look cute but I am always in pain.
  • When I am at home, I do not wear makeup. I wear a tank top and underwear.I am never cute or put together.
  • If someone drops by unannounced, I am embarrassed.
  • My once immaculate house is no longer pristine. I can not do housework. I can not afford to hire help. My daughter and husband do what they can when they get off work from their demanding jobs. Occasionally I put dishes in the dishwasher or a load of clothes in the wash.
  • My carpets used to be impeccably clean.They are now in desperate need of cleaning. 
  • I am on Medicare at the age of 46, and have been unable to receive SSI Disability because I worked for a school district and they paid into an alternative retirement system.
  • My 24-year-old daughter stepped in to help pay bills and support me. Everyday, I fear that I am halting the progression of her independence.
  • My son moved out at the age of 21- he could not stand to watch this disease progress.

You can not see the tears and heartache of a family that no longer depends on me for anything. They don’t call me for anything. They call to check and see if I am doing alright. My son calls and asks how my day is going.
You can’t know the toll this on taken on my intimate life. My husband and I have been married 26 years and are still very passionate about one another. Except, either I can’t or don’t want to be touched. It hurts.
You can’t see the days I can not bathe. I towel off, don’t smell fresh, hair unkempt, teeth not brushed because it hurts too much. The fatigue can be overwhelming and I sleep for 16-18 hours a day.
You can’t know the frustration of having a husband sleep in another room because I am awake 2-3 hours in the middle of the night watching tv, or on social media on my phone. Sleep eludes me or pain won’t let sleep so I am awake disturbing him.

It may sound like my marriage is unhealthy, but it is just the opposite. It’s better than ever. I never knew how much he loved me.

My husband has climbed in the shower to help me bathe, calls me to see if I have eaten and brings me food, he calls me from the grocery store to get a list. If I’m having a flare in the middle of the day, he or my daughter will leave work to be with me. They worry when I cry because I never cry. If I wake him at 2 am and I need to go to the emergency room, he is dressed in record time. That has happened a dozen times in the last 5 years. If he wasn’t able to take me for some reason there is always my daughter. She has given up days of work for me. Her boss understands and works with her.  For all of this, I am so grateful.
You can not see how much I miss driving to the store or taking myself to a restaurant. I have to wait for someone to pick me up be home. At this age I feel like a teenager waiting on my mom and dad.I have watched my daughter take on an authoritative role and I am the dependent. I hate this but at times it is what is needed. I am dependent on my family. They are #myarmy. 

You can not know how it feels not to be able to bathe myself or comb my own hair. This is not an all the time thing, but there have been spans of time where this is my reality. From totally put together to completely disheveled.

My despair is not constant, but when the depression settles in it comes with some dark thoughts. I have found myself thinking, Why am I here? What do I contribute? Am I a burden? Do I want to live?

That last question worries them the most. They assure me that I am wanted, loved….From what do they draw that conclusion? Don’t get me wrong, I am not suicidal but learning to be me in this skin has been tough. I will always share a smile, and a positive thought or phrase because I do believe better days are ahead. I do have faith and a belief that God and my family are reason enough to be here.
But my private thoughts aren’t always so bright.That is why you will never know how much I depend on a laugh, kind word, social media post a message on my phone….It is the simplest of gestures that get me through. They mean so much because someone took their time and energy to think of me when I can not always give in return.

So, that has become my purpose.  To be a beacon of happiness as best I can; to give back to others and to remind them of how they should be happy! There is so much to be thankful for and happy about. Lifting someone’s spirits because the same has been done for me is my mission.

“Never ever think your voice is lost in the universe….It is unique and needed…..You don’t know but I am listening for it.”
~Maria Anne Tripp Martinez

Reshared with Maria’s permission. Originally posted on patientworthy.com