Monday, October 20, 2014

I am a normal person

For the past few years, I have been a co-admin of a Facebook support group.  I have this blog and I have written a book:  CRPS/RSD Facts, Fiction and Feelings.  I try to be accessible to the members of my support group but some how that doesn't come across.  I find it very frustrating that I am viewed as inaccessible.

I can't get used to people knowing who I am when I have never met them.  Two weeks ago, I was sitting with a friend who was getting ketamine at Florida Spine Institute in Clearwater FL.  Crissy, one of their fantastic nurses, asked if I knew "Mary".  I said that I did not.  Crissy wanted to know if I would talk to her.  Of course I said yes.  Crissy checked with "Mary' to be sure that she was okay with it.  "Mary" shouted out "I have her book!".  We spoke for a while, I gave her a hug and went back to my friend.  "Mary" started calling friends/family to tell them that she met me and I gave her a hug.  I appreciate that she purchased my book as all royalties go to my non-profit CRPS Partners In Pain, Inc.  It felt weird to me that someone would be excited to meet me.

I am just a normal person with CRPS who wants to use my nursing education to help others with this monster disease.  CRPS Partners In Pain, Inc is my baby.  The founding mothers saw a need to help those not getting treatment because of financial issues needed treatments.  There are non-profits that promote CRPS Awareness (I whole heartedly support them) and non-profits supporting research.  There was no one helping the educated getting the treatment that research has found helpful.  This is why we started CRPS PIP.

I don't see anything special about what I am doing.  I don't think of myself as inaccessible yet that seems to be the perception of others.


October, November and December hold a lot of memories from 2001.  It was October 26th 2001 that I was put into a Ketamine Coma in Germany.  At the time, we thought that this would cure CRPS.  That was not the case.  As of this post, ketamine coma is not available anywhere.

As a RN, I knew what the risks were of any drug induced coma:  respiratory illness, infection, blood clots, etc.  If I were presented with the opportunity to get ketamine coma treatment now; with the ketamine options available now that were not available then, I would not take the risk.  We now know that ketamine is needed on an ongoing basis and that it is not a cure.

I arrived back in the US on Veteran's Day.  My father, who was dying of ALS, went into a nursing home for two weeks, so that my mom could accompany me to Germany.  The entire time that I was awake, I was concerned that we would get a call telling us that he was gone.  It did not happen.  November 26 2001, my father passed thinking that my CRPS was cured.

December 14 was my father's birthday.  All special events are difficult once you loose someone.  This was particularly difficult as his birthday was just after his death.

Monday, September 1, 2014


Today, September 1, 2014 is the start of Pain Awareness Month.  Most people are unaware that chronic pain is a diagnosis of it's own.  Doctors blame the pain on depression; however, in most cases it is pain that causes depression.

The most common type of chronic pain is the migraine.


Migraine is a headache with pain that can last from 4 hours to 3 days.2
  • Pain is usually moderately to severely intense, pulsating, and often occurring on 1 side of the head
  • Telltale signs of migraine may be nausea and/or vomiting, and sensitivity to light and sound
  • Changes in vision or hearing, called aura, may come just before or just as the migraine begins2
Migraine can be defined by how often headaches happen.
  • One type of migraine occurs with fewer than 15 headache days per month, some of them being migraine. This is called episodic migraine
  • The second type is when headaches occur 15 or more days per month with headache lasting 4 hours or longer for at least 3 months, some being migraine. This is calledChronic Migraine2-4

Sunday, June 15, 2014

How do you do........?

I am often asked how I can do so many things with full body CRPS?  How do I go to Orlando attractions with my husband Jim or travel to DC to see my grandson?  I was 38 when I was injured.  My girls were 11 and 13 years old.  I made a decision way back then that I could sit at home and not participate in family activities or I could swallow my pride and use a wheelchair.  I walk within the house but when we go out anywhere, it is done in a wheelchair.

To prevent atrophy due to non-use, I ride an exercise bike daily.  This is non-weight baring but it helps keep my muscles strong and increases blood flow to my foot. I've tried weight baring exercise which is better for you but my foot can not tolerate that.  The crush fractures of my foot and subsequent fusion surgery are what caused my CRPS.  The orthopedic injury was bad enough to have disabled me even if I never got CRPS.

This is not always easy.  Sometimes, like everyone else, I over do it and pay big time for it.  Other times there is something that I really want to do but it isn't feasible even in a wheelchair.

I choose what activities are important to me.  I can't do everything and if I try I will end up not being able to do anything.  When my children were young; I asked them; what event that you have this week or this month is most important to have me attend?  I made sure that I had rest days before and after those important activities that they wanted me to watch.

My husband likes to plan surprises.  He gives me dates to reserve.  Again I plan days before and after to rest.  He knows my limitations.  We use the wheelchair.  If I can't do everything that he has planned; we just skip it.  When we are away, we go out in the morning to do things and spend the afternoons in the hotel/timeshare so that I can rest before we go out to dinner.

I know that some have injuries that a wheel chair won't help.  When I had my back injury; I could not sit in a wheel chair.  I was only comfortable when I was flat on my back.  That year between the injury and surgery; we did very little.  I get it that not everyone has something like a wheelchair that will allow them to get out and do things that they enjoy.

With ketamine infusions, I am also able to do more things.  The LDN reduces the frequency, severity  and duration of my flares.  I still get them.  Earlier this month I had the worst flare that I had had in 10 years.  Why? Because my adrenals decided to stop functioning and my May ketamine did not help.  It is a huge emotional set back when something new crops up.  We have figured ways to deal with our main health issues.  When a new one pops up, we feel defeated.  Instead we need to try to stay positive, to look for answers as to what is going on with this new symptom and not automatically assume that it is CRPS related.  Not everything that happens to us is CRPS related even though it feels like it is.

I try my best to keep a positive attitude.  That is not always possible but I have always been a glass half full person and have tried not to let CRPS change that.

Wednesday, April 16, 2014

Tough Time

I have encountered a new health problem.  My adrenal glans are not producing normal amounts of cortisol.  Lately I have had no energy and an increase in pain in areas where I didn't have pain before.  My doctor suggested a saliva test.  It showed that I am not producing cortisol.

I have been trying to push through this but it is very difficult.  Some times this disease can be overwhelming.  It seems that every time you think that you have established a new norm, something new pops up. I am trying not to let it drag me down.  It is a tough fight.

We also lost another CRPS Warrior last week. I met Lisa and her partner at our CRPS PIP symposium last November.  It is so sad to loose such a vibrant person. I always wonder if there was something more that I could have done to get help for her.

I am trying to eat a healthier diet and have added resistance to my exercise bike.  It is really difficult to get motivated to ride it but I have making it a priority.  I have given up diet drinks.  I am trying not to eat processed foods.  We are getting organic fruits and veggies.  I even got Jim to buy free range chicken.

Thursday, March 27, 2014

Justice For Justina

Recently I learned of a teenaged girl who is in the middle of a custody battle.  The battle is not between her parents but between Boston's Children's Hospital and her parents.  Justina and her family live in CT.  She was diagnosed at Tuffs University Hospital with a rare genetic syndrome.  Justina's parents took her to Boston Children's Hospital for treatment.  In February of 2013 DCF of Mass took custody of Justina.  .  Justina's parents took her to Boston Children's Hospital for treatment. Instead doctors there over ruled Tuff's diagnosis and diagnosed Justina with a psychiatric disorder.  She was locked up in the psychiatric unit in spite of the fact that she was there to be treated for this genetic disorder.

This tuesday, the judge awarded permanent custody to DCF of Mass.  In his four page decision, Judge Johnson faulted the CT's child protective agency for it's failure to get involved. He wrote that Justina's parents of having haphazard decision making regarding their daughter's care.

How would you react if your 15 year old daughter was diagnosed with a rare genetic syndrome?  You would seek treatment.  That is exactly what Justina's parents did when going to Boston's Children's Hospital.  How would you feel if your daughter was diagnosed as having a psychiatric illness rather than a physical illness?  As someone with CRPS, I have heard over and over again that my CRPS is all in my head or there is no such thing as CRPS.  I was angry.

If my teen had a rare illness and was then told that her symptoms were made up; I too would be furious.  How would you feel of your child was taken from you and given to DCF and locked in a psych unit getting no medical treatment? How would you feel if your daughter went a year without a court appointment advocate (Gardian ad Litem or GAL)?  I know that I would be furious.  I would do everything in my power to fight to get my daughter back to Tuffs and get treatment for her medical condition.  This is exactly what Justina's parents are doing.

How can you help?

Learn more about this case,html

Go to

Sign a petition:

I can not understand why DCF of Mass sees it as their duty to take custody of Justina when her home state Conn and Tuffs University Hospital do not see this situation as child abuse.  What gives Mass the right to limit contact between Justina and her parents.  To have supervised visits fearing that her parents would discuss things that DCF deems inappropriate.

Help Justina get the medical treatment that she needs and has been suspended for over 13 months. Get involved.  This could just as well be your teenaged child.

Thank you Sue Pinkham for bringing this to my attention.  As a former pediatric nurse and as a GAL in FL; this situation infuriates me.  We all need to help Justina get the treatment that she needs and reunite her with her parents.

Wednesday, March 12, 2014

First Birthday

A year ago at 8:25 p.m. the most amazing person came in to this world.  Although his birth was not what we anticipated, he could't have been loved more.  I have watched Kim and Bennett evolve from a couple to a family.  At first Kim would ask Ian if he wanted to go to Bennett.  As the days passed, Bennett was daddy and Kim was mommy.  The normal sleepless nights have been handled with grace.  There couldn't be any  two people more dedicated to being sure that Ian is a healthy happy baby.

This year went by so quickly.  I go back and forth from Orlando being a wife to DC where I am grammy.  It is so rewarding seeing that big smile and his face light up when I come to visit.  Being a grammy with CRPS has it's challenges.  Challenges and all, it has been a great year as Ian's grammy

Sad Day

Yesterday I resigned from Ketamine Klub.  There was too much stress and bullying.  K Klub has gotten too crazy with people worrying about who is friends with whom.  Although I will miss my friends in K Klub; I can no longer be involved.  This has me sand and depressed.

Friday, February 28, 2014


Next week marks the 18th anniversary of the injury that caused my CRPS.  Last year at this time, it didn't even pop into my mind as we were waiting for Ian to be born.  I was feeling so positive and all was going well. Even the past years, this anniversary did not cause me to stop and rethink what I was doing.  This year is different.  I am questioning everything.

There is so much going on within the CRPS community that saddens me and sickens me.  We have lost so many CRPS warriors in the past 12 months. Was there something that we as a community could have done to prevent them from taking their lives? Is there something we can do in the future other than continuing to post suicide prevention hotlines?

We have seen attack after attack between one "organization" and another as well as within organizations.  I do not understand why this drama is necessary.  Why can we not all do what it is that we do best whether it be awareness, research, or funding treatments?  Why is it that their is a need to compete with one another.  We all have the good of the CRPS community in mind.

As people with CRPS we all have slightly different symptoms and respond to different treatments.  We have so few physicians treating the CRPS community.  Why are we arguing over who prescribes what to whom?  I have voluntarily been involved in multiple medication studies over the years.  How do we know what treatment will work unless we study it?

I do my best to try to help those who need information, referrals and financial assistance to get treatment.  I get so frustrated that I have to walk on pins and needles, worry about personal attacks and worse yet, personal attacks on those who I am trying to help.

What can we do to get everyone to work towards a common goal?    I guess I am just naive to think this is possible.

Friday, February 21, 2014

CRPS: The Suicide Disease

In a few days, it will be the 18th anniversary of the accident that caused my CRPS.  Over the years, I have talked to hundreds and hundreds of people.  My doctor's office had me talk to people going for the coma ketamine treatment.  Then I was a pain mentor with RSDHope and currently I am a pain ambassador for US Pain Foundation and run a support group on Facebook.

In my 18 years, I have not seen as many suicides as I have in the last 12 months.  Some I met in person others I only knew via Facebook.  I understand depression.  I've been their.  I understand the pain both physical and emotional that this disease inflicts on us.  I do not judge these people who could not take it any longer.  That is not my place.  What bothers me is that people are using these tragedies to voice their own agenda.  These families are hurting,  Suicide is very hard for the ones who are left behind.

I will miss these CRPS Angels.  I will speak to the families that reach out to me but I will not engage people who are using these tragedies to voice their own agenda.  I'm sure that these people are passionate about their agenda.  There is no evidence to back it up.  The people I knew who took their own lives did not take this medication so it can not be the cause of their death.


You are no longer in pain.  Our thoughts and prayers go out to your families.  Your loved one is no longer in pain.

Saturday, February 8, 2014


This month has had it ups and downs and we are just over a week into it.  CRPS Partners In Pain was able to send one RSDer to a top notch doctor for a pain consultation.  Tomorrow another is going to Clearwater for ketamine.  While we are in the midst of doing what we feel is important work; there have been attacks on three of our board members.

First there was the WEGO Health Activist Awards.  One of our ketamine klub members nominated me last year.  Endorsements ended January 31.  When some of our members looked at the judging process, they found that nominees in one category can be judges in another.  When ketamine klub at large heard this, they began writing letters to WEGO in protest.  Naturally the people who have been harassing us for several years, assumed that I was behind it.  Well you know what happens when people ass-ume.  I wrote to WEGO and asked them to remove my name from the nominees.  I never heard back.

I do not want there to be discord within the RSD/CRPS community.  In an ideal world we would all work together.  If someone I speak to needs a service that CRPS PIP can't provide, I would like to be able to refer them to another group that can help them.  If someone else speaks to someone with CRPS and their needs fit better with our business plan and philosophy then I would hope that they would send them our way.  Unfortunately, this isn't happening.  It is a great disservice to the CRPS community that we can't always get along.

Facebook has me frustrated even more.  To run a Facebook group, you need to be able to message and friend perspective members.  Evidentially Facebook has other ideas.  Once again I'm in Facebook "jail" unable to friend or message people who are not on my friends list.  We have often thought of taking the group off of Facebook but the decisive feelings of our members is that they don't want to have to go to multiple places for multiple groups.  Only 6 weeks into the new year and I'm already in jail for 7 days.  Grrr

CRPS PIP has some exciting events coming up.  This fall we are going to do a 5K walk/run.  Miss DE will be handing out metals.  Her platform for the Miss USA competition is CRPS.  How great is that??  We will also be having a silent auction with some gorgeous stain glass items, water color prints, etc.  We have set a goal of raising $8,500 per quarter.  In January we met our goal of $2,100.  I'm hoping that we will be able to do as well this month.

On a personal note; Ian will be 11 months next week.  Where did the time go?  He is the most amazing little guy in the world (ok I'm prejudiced)

Tuesday, January 7, 2014


Yesterday I learned of yet another loss of life within the CRPS community.  Some of the six people who died in the past 12 months were straight up labeled suicide. The others, no other cause of death was given.  I am struggling to think what could we as a community done to prevent this loss of life.  I interact with about 600 people with CRPS.  To loose 6 of them is devastating. I am at a loss as to what to do.

There needs to be some way that these people can reach out to another with CRPS.  Yes their are suicide hot lines; but if you don't have CRPS you have no clue what it is like day to day.  We publish suicide hot line numbers everywhere.  How do we help these CRPSers know that they are loved, that there is hope and they are not alone?

I am open to any suggestions.  I am thinking that before I write my pediatric book, I need to write something for both caregivers and people with CRPS about suicide...more that what is in book 1.

Monday, January 6, 2014

A New Year and New Goals

As we begin the first full week of 2014, I have set some goals for this new years.  Here are my hopes for 2014

First and foremost, I need to stay healthy.  If I am not healthy, I can't help anyone.

2.  Spend time with my grandson Ian!

3.  Raise money for CRPS Partners In Pain, Inc.  Our first quarter goal is to raise $8,500.  This will permit us to provide ketamine treatments to one person for one full year.  That includes the loading dose (5 days at $500/day) at $2,500  and boosters every other month at $6,000. In 2013, we were able to help one person pay their COBRA Health Insurance so that they could continue to have treatment for their CRPS.  We funded 2 people's ketamine treatment, boosters for 2 people and medications that were not covered by insurance for another.  In order for us to help more people in 2014, I need everyone that I know to donate just $10 and share our donation requests with their friends.  Donations  can be made by going to and click on donate.

4.  Write a book on Pediatric Pain for children and their families.

5. Continue as a co-admin of Ketamine Klub

6.  I so much want to find a place where those with CRPS who either live alone or with elderly parents can pull their resources and live together.  Most are on fixed incomes that barely cover the basics.  If you took 5 people and their incomes the standard of living would improve for all.  They would be able to support each other emotionally, help with treatments and know that they are not alone in this battle.  The problem is finding an organization willing to donate a house in a warm climate and near a reputable CRPS doctor.

I know that it is unrealistic to think that I can meet all of these goals in 2014.  Goal 1 - 5 are very doable but I fear it will take more time to reach number 6.

Please share my blog with your friends and family.  Hopefully it contains information that is new to you.

HAPPY NEW YEAR to you all!!