Be Like Bill…..

3843727 (1)

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!

The Wings of Strength

The tough week found me back to back for about a month. I became angry at myself, the world, the flares. They took me down into a dark place that I hadn’t visited in years. My anxiety flared. My anger became worse. I began to hide from everyone.

I experienced my first “freeze”. My left leg engulfed in ice. My right leg engulfed in fire. I began to realize this is a sign of the monster getting worse. The almost falls at home or in the store. The pushing myself through my day because I wouldn’t accept what is happening. Only to find myself laying in my bed on weekends and not wanting to move.

But last night I realized that while my anger and sadness are justified as I reel from losing my old life. My new life which is full of pain is also full of strength. Because everyday I win even if I feel like I am losing. I win because I keep moving. I win because I keep getting up. I win because when I am about to fall or I do fall, I pull myself up and keep going. I win because I laugh. I win because I am alive.

We all have those Wings of Strength. Let them help carry you through the day and keep fighting my fellow Warriors!riseabove

And a Gold Medal for Team USA (& Pain Warriors)

Paralympics USA Gold

On September 8th, the U.S. Women’s Wheelchair Basketball team started the Rio Paralympics with a record-breaking win. And yesterday, they took their trip to Rio another step further, they also took the GOLD.

Paralympics USA Gold
USA Women’s Wheelchair Basketball Team takes the GOLD

With every team are individuals who excel in their particular aspect of the games. And with individual of that team is a person who came to participate in the sport for one reason or another. And one of those who participated in this years US Women’s team this year, is Abby Dunkin, a fellow pain warrior from Texas.

Both Abby and Rachel Morris have done something that most American’s are brought up to identify as being the best of the best in their sport. They became part of an internationally recognized event and they have CRPS. Now maybe this was not what they expected to do when they grew up. But as Rachel discussed just two years ago after getting bronze in London weeks after her injury during training,

“They believe I can do something in the sport. I’m on the talent transfer for the first six months and then hopefully after the Worlds I can go through as a rower to Rio 2016.”

 

We will fall down, we will have challenges, but we can keep fighting to make that change in our lives. So remember these two. That they are proof when someone gives themselves a goal, they can achieve greatness. And while it takes time, effort, dedication, and most of all a great team of people supporting you for when you fall down, we can do amazing things.

Now, I may never win the gold at the Olympics, but I sure will win the gold of achieving my goals of helping support others. And that is all the winning I need.

Morris shines as Britain claims 3 rowing golds

CRPS Gold Medalist

Britain enjoyed a golden morning in the Paralympic rowing, picking up three gold medals. Rachel Morris is a Paralympic champion in a second sport after claiming rowing gold in Rio yesterday, while Lauren Rowles and Laurence Whiteley also won the double sculls, before the mixed coxed fours completed the run of success, to make it 18 gold medals at the Games for Paralympics Great Britain.

CRPS Gold Medalist
Rachel Morris celebrates after winning the ASW1x Final A gold in Rio de Janeiro yesterday. (AFP)

The 37-year-old Morris, from Guildford in Surrey, won a road cycling time-trial gold in Beijing eight years ago. She was third in the road race on her hand bike at London 2012, six weeks after being hit by a car in training.

Four years on Morris won the women’s arms-only single sculls with a perfectly timed surge in the second half of the 1,000 m race. Farnham’s Morris, who had both legs amputated because of complex regional pain syndrome, finished ahead of China’s Lili Wang, while Israel’s Moran Samuel took bronze.

She switched to rowing in 2013 and now has three Paralympic medals across two sports, adding to the hand-cycling time trial gold she won in Beijing in 2008 and bronze at London 2012.

Rowles and Whiteley then led from the start and held off China in the double sculls, before Pamela Relph won a second gold in the mixed coxed fours, having won the same event at London 2012. James Fox, Daniel Brown and Grace Clough, plus cox Oliver James, celebrated with her on a memorable day for British rowing.

Theirs was a fourth British medal from the morning at the regatta, after Tom Aggar had to settle for bronze in the men’s arms-only single sculls. Aggar won gold in Beijing and was unbeaten in four years until London 2012, where he was bitterly disappointed to finish fourth. He dug deep to return to the podium in Brazil.

Para-triathlete Steadman, who was born without a lower right arm, had been favorite to add Paralympic gold to her 2013 and 2014 world titles. But the 23-year-old former swimmer from Peterborough lost out to the USA’s Grace Norman by one minute and four seconds.

In the velodrome, London 2012 gold medalist Fachie, who has a congenital eye condition, and his pilot Pete Mitchell clocked a time of one minute 0.241 seconds to take silver, 0.419 seconds behind winner Tristan Bangma of the
Netherlands.

Originally posted on Gulf Times September 11 2016 08:25 PM (Author not credited)

CRPS and the Snowball Effect: Depression

Pixabay Public Domain

After discussion with a life long migraine sufferer, my step mom, about the snowball effect with eyes; she not only could agree, but also pointed out the direct correlation of the “Snowball effect” and depression.

  • : a state of feeling sad

  • : a serious medical condition in which a person feels very sad, hopeless, and unimportant and often is unable to live in a normal way

  • : a period of time in which there is little economic activity and many people do not have jobs

 

Depression under the second definition is a significant issue for many chronic pain patients. And can be caused by a multitude of factors we all have in our lives varying from medication side effects, to sleep deprivation, pain itself, or even a combination such as sleep deprivation caused as a medication side effect.

While yes, medicine can be a huge help for us, depression is often something many don’t want to discuss, admit, or treat. We hesitate talking about it because we dread the doctors will force yet another pill on us, it’s just ONE MORE PILL none of us want to take in the first place and we’ll be less human with it. So we don’t treat it. We don’t talk about the things that make us sad. Which that silence in turn makes us feel more hopeless. All the while adding to that alienation feeling we already have dealing with our pain and inability to easily socialize.

In early 2000’s, research started investigating the ties between pain and emotions. This led to a publication in 2010 that found in fact “Negative Emotions Increase Pain.” With that thought in mind, our medical professionals are only now starting to recognize our depression adds to our pain. Which again can add to problem of feeling isolated. This depression increased pain can also add to our problems sleeping, even need more medicine, which again could add to more problems sleeping. All the while decreasing our mood…

As you can see this snowball slides down the mountainside picking up speed, sometimes even risking becoming a full-fledged avalanche. But we can slow this down, we all have tools available that can help.

  1. Seek medical help:
    1. if you think it can be managed without medicines, seek out a psychologist.
    2. if you think you may need medicine, find a psychiatrist.
    3. better yet, seek an office who has BOTH. This offers you the help finding which (medicine or no medicine) is better for your situation and promotes options where you come off when you’re feeling more you and the doctors think it’s safe to come off together.
  2. Talk with friends about things, we all know that sometimes someone who understands, we feel better
    1. Remember to listen to those friends, if they think you need to see professional help, then they care enough to urge you to take care of you
    2. Remember good friends LISTEN back, so don’t neglect your friendships because you feel miserable. Sometimes just listening to them can help you feel like you’ve accomplished something so don’t forget this important part of being a friend.
  3. Make a private blog to just vent both the good and the bad.
    1. US Pain just the other day shared a great reminder on this:
  4. And if you are at the edge, if you only see the blackness of the negative emotions around you, PLEASE call the suicide hotline.
    1. NOTE: We previously wrote about calling Suicide Prevention to help remind people to make sure to clarify things so there isn’t a miscommunication. Because if we need to call, we NEED to talk to someone. And just having that person to listen, to talk with about everything going on to get us through until we can get to our doctor. Sometimes that is the one grounding we need.

So no matter what you choose, or how many of these ideas you choose, DON’T try to do it alone if you have harmful thoughts about yourself or others. You are not alone and don’t have to be. Depression can and WILL snowball, but we can try to keep it from becoming an avalanche.

CRPS and the Snowball Effect

With CRPS there are so many systems that can be effected and so many ways it can manifest uniquely for each patient. Making identification and treatment plans to be difficult to identify.

According to Wikipedia the snowball effect is:

a process that starts from an initial state of small significance and builds upon itself, becoming larger (graver, more serious), and also perhaps potentially dangerous or disastrous (a vicious circle, a “spiral of decline”), though it might be beneficial instead (a virtuous circle). This is a very common cliché in cartoons and modern theatrics and it is also used in psychology.

One system that can be affected that has been asked about recently is the optical. The eyes can be affected in varied ways. Everything from just blurry vision, to reports of early onset of cataracts, right down to needing 20% or less full wrap sun glasses to address severe light sensitivity.

The reason I mention the snowball effect is that while we might not want to accept or acknowledge our decreased vision. We are putting ourselves at risk and not even realizing it. If we have decreased vision, we might purchase or prepare food that is moldy. We might wash dishes and not see the food remains that have not come off the dishes.

Life is full of different challenges and we must find ways to overcome. Even if we don’t know we are dealing with them yet. So consider this a little reminder

  1. Make sure you have REALLY good lighting when washing and inspecting dishes both. Suds (invisible to us but other family can see) can hide debris when rinsing is completed as far as we can see.
  2. Soak your dishes before washing to help get off anything that might be dried on, off easier.
  3. Consider keeping a magnifying glass by the kitchen sink.
  4. If you have glass dishes, consider switching to plastic.
    1. Many get shaky hands and makes easier to drop.
    2. Many have difficulties identifying where their hands are and might grip too tightly.

And lastly you might want to consider doing this for yourself, because if we eat bad food, on dirty dishes, we increase our risk of getting sick.

And for those who have heard rumors, soon we’ll be launching our recipe site. Things you submit to us that you have found making is easier for you, or that can be bulk prepared and made for those REALLY bad days where even microwaving is the bare minimum you can do.

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.

Pain Community Stuck In Another War

It’s recently come to light that pain patients aren’t just fighting a war against the US administration for our medicine, but now  Facebook Pain Groups are being targeted by Hackers. So we’re taking a moment to help educate the community.

Research your websites

As you notice below  in the light grey text above is a website domain name is provided: “personalhealthrecords.in”. This is going to be our example to find the answers for you to help avoid infecting your fellow members of the community.

RCDOM members could be War Casualties
RCDOM members could be War Casualties

Go to a browser and use a search engine to search for “whois personalhealthrecords.in” which will give you this selection on google. Please note whois is all one word not two separate words.

googlelinks
When looking at the first link there are a few key things you want to look for. First off the website’s “header” says a fairly recent date.

websiteInfo

Next critical piece of information is registrant information found under “Registrant country” which here it says PK. PK is short for Pakistan, NOT India (which is what the .IN in the address stands for). Finally add in the fact it was purchased late last year. The combination of the three create a trinity of warning signs to avoid. whois

Don’t share if there is red flags

Red flags are

  • hidden registrant information
  • registrants from foreign countries that don’t have English as a base language
  • sites less than a year old
  • registrants in countries other than the domain ending suggests. (.in is India .pk for Pakistan)

Please be very careful of the sites you share. As we mentioned even we were hit, so please know that this is the only way to verify if a site is safe. There is no set time frame, but I think articles like the one that got us, which were initially published the first time over a year ago suddenly reappearing on a page, is a safe bet it is not a valid website.

These sites are including viri and key logging applications. They affect both computers and phones. If you opened links, like the one we posted above, anti-virus applications MAY NOT FIND them yet as they appear to be very new. So please be VERY careful what you share and even more importantly what you open.

How to tell you’re infected

The only way I could tell I was infected was that my keyboard on my phone was responding slower than before and occasionally would open and close randomly for no reason I could explain. Sometimes until there is an issue or the virus is found by an antivirus applications like this can hide and run in the background for some time. Leaving your personal accounts vulnerable. So please if you have ANY CONCERN about what websites you’ve opened, consider carefully what you are using for antivirus software and if behaviors of your machine are not appropriate for standard use, then you may have an issue.

CRPS: The true cost of an incident?

CRPS: How can one begin to explain chronic pain?

For those who have never experienced constant chronic pain typically seen in CRPS, it is a foreign language, always just around the peripheral but never omnipresent. It serves a purpose to keep us safe, but it is never intended to stay for long. The injury heals,time moves on and so does the pain. That is the way it has always been.

Until one day it doesn’t, instead it lingers and invades every aspect of your daily life.

There are two different ages in my life that I mark as before and after being diagnosed with CRPS. Before diagnosis, I could outrun circles around a circle. After diagnosis, I am lucky if I am able to put my own shoes on.

It is hard for people who have never experienced this constant nagging, burning pain to comprehend this.

So many times that I have lost count I have been told that “These things take time, you will be better by (time frame).” That time frame always comes and goes as a minor blip on the calendar and I am worse, not in any way better.

I was made aware of an interesting case of a woman who claims to have been injured by a wine bottle whilst out shopping. She claims that a result of this injury is that she has developed CRPS. She says that because the wine was not placed in a double bag that the bag tore resulting in her injury. As a result of this belief and due to the nature of the injury, she has decided to file a claim against the store for 8.3 million dollars. 

Woman Sues for 8.3 Million

I shared this story with friends outside of the CRPS community and got reactions in a large range.  Many called her greedy and selfish and some commented that she didn’t need that amount of money. Some also said that she was making it look worse by complaining about the use of a crutch.

I will not deny for a lot of reasons we are a “sue for no reason” type of society at times, but this is the one time where this Author believes this is a justifiable number that covers the need.

Imagine that you are middle aged and you have been putting what little savings you have aside for retirement with the rest eventually going to your kids.
One day you do something you have done a million times before and go to the store. This is something we all do almost every week, only for this lady fate had another idea.
A wine bottle breaks through a plastic bag and lands on her foot creating a series of unfortunate events leading to the development of CRPS.

Suddenly all of your carefully laid plans are uprooted and dashed to the four winds. You can’t work, can’t care for yourself let alone others. A well provided family can turn destitute almost over night due to this disease.

Suddenly you have to account for paying for medications, doctors, co-pays and specialists that you never knew existed. Your days become a mix of taking medications for pain, having procedures just to keep minimal function, taking more medication for the side effects of the procedures and yet more medications for the pain. These are just the minor things and already the bill has steadily begun to increase, soon becoming very high indeed.  Eventually you have to move on to surgical procedures that often stretch to the tune of hundreds of thousands of dollars at a time.

All the while there is still the family to provide for,  but how is this even possible?
In today’s society we cannot go like our past ancestors and live on only one salary. More and more families now depend on having two bread winners to ensure stability in the home.
What if suddenly one of these crutches breaks?

Let’s do a bit of Math:

  1. Average Income of a Family in the United States- $51,939(1)
  2. “Annual premiums for employer-sponsored family health coverage $16,351 this year, with workers on average paying $4,565 toward the cost of their coverage” (2)
  3. Average Mortgage per year- $12,876 (3)
  4. Cost of Food (Low Budget, for One Year) – $7228– about $139 per week (4)
  5. Co-pays- Four Appointments a month (PT, GP, Specialist, and Pain Management.) Average is about $20 an appt.- $960 a year.

Let us start there. Let’s cut the average income in half since we are all for equality- $25,969.50

Minus Insurance-$21,404.50

Minus Mortgage- $8528.50

Minus Food- $1300.50

Minus Copays-$340.50

We are left with $340.50
That is $28.37 a month and we have not even covered taxes, car insurance, utilities and other necessities.
CRPS truth about income

Suddenly we can see the dire situation we are in and we are headed into the red pretty fast.

According to the article they say the lawsuit is:
“seeking non-economic damages for pain and suffering of $4.2 million, plus nearly $4.1 million in economic damages from $74,048 in medical expenses plus expected future medical expenses, loss of earned income and other expenses.” (5)

She is asking the highest number hoping to reach the stars below. I know I would do the same if someone asked me, “What is my life worth?”
She is doing the best thing that she knows how to do, with the ability she has left. Provide for herself and her family, it is just in a different way to somebody else.

What are your thoughts on this case and do you believe that the amount being sought is excessive? 

Please leave a comment below and let us know your opinion as we love to read your comments!

Sources:

  1. https://en.wikipedia.org/wiki/Household_income_in_the_United_States#/media/File:US_Real_Household_Median_Income_thru_2014.png
  2. http://www.ncsl.org/research/health/health-insurance-premiums.aspx
  3. http://www.fool.com/investing/general/2015/03/23/heres-the-average-americans-mortgage-payment-by-ag.aspx
  4. http://www.usatoday.com/story/news/nation/2013/05/01/grocery-costs-for-family/2104165/
  5. http://www.mailtribune.com/article/20160201/NEWS/160209975/101033/NEWS