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

Cliff Ansteth

RSDAngelStrong

Who is Cliff?

My name is Cliff Ansteth, I am a 31 year old father of 4 great kids and a husband to a loving wife. And I once loved to work with my hands, but I have a rare autoimmune disease known as CRPS (Complex regional Pain Syndrome) also known as RSD (Reflex Sympathetic Dystrophy). I have it in both of my hands and arms but it can spread anywhere it wants.. including organs.  I will share a paragraph from RSDHOPE.ORG  to better explain this disease.


“Complex Regional Pain Syndrome, or CRPS, formerly known as RSD or Reflex Sympathetic Dystrophy is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. The pain is characterized as constant, extremely intense, and out of proportion to the original injury. The pain is typically accompanied by swelling, skin changes, extreme sensitivity, and can often be debilitating. It usually affects one or more of the four limbs but can occur in any part of the body and in over 70% of the victims it spreads to additional areas. CRPS is ranked as the most painful form of chronic pain that exists today by the McGill Pain Index .”

So what’s happened so far?

I have been out of work on doctors orders (3 separate doctors) since October of 2012. My case of CRPS developed after a work related bilateral Carpal Tunnel release surgery. I cannot use my hands for a simple everyday tasks without making this excruciating pain worse. There are treatments available that can help, but the insurance company is denying my right to treatment. I cannot collect unemployment and I cannot collect disability without a fight. All I want is to feel normal enough to go back to school to find a way to provide for my family again, but these days I find it tough to get out of the house.

My condition has tested me and my family in more ways than I can ever explain, but we need help now more than ever. The insurance company has given me the opportunity to appeal their decision to halt treatment. But it is at my expense and I have no income. My wife has returned to work so that we may survive, but it does not cover the expenses to pay my attorneys and doctors for their depositions in court to speak of my condition.

I can no longer burden my family financially and I am hoping that there might be some people out there that know what it is like to have a painful disease, and not be able to get proper treatments. I can bear the pain but it is destroying me inside, and my kids deserve their fun daddy back. Anything will help us at this point, But what I am seeking is my right to be treated by the proper doctors, that will help me live a “normal” life and achieve my goals in life.



The pain has recently shot up all of my fingers causing swelling and bulging veins. I cannot bend my fingers or straighten them out without paying a toll.


Loud noises, excessive movement, or just plain old-fashioned stress can trigger the FIRE to ignite from within. 


While my hands may seem “normal” to some, in this picture the swelling is somewhat reduced so that you can see the atrophy and pitting where muscle is depleting.


Want to know more?

Anyone that wants more information on CRPS can click the links that I have provided. Or if you have a strong stomach, you can Google image search “CRPS” to see what the prognosis typically is. If you want to know more of my story or would like to share your own with me, I have provided a link to my Facebook at the top. Just click on my name.  

Thank you all for reading my story and God bless you all.

(This was shared at Cliff’s request via a copy and paste from another site. So if some sentences seem non-CRPS familiar focused, it’s because he’s trying to educate as well. GO CLIFF!)