SEPTEMBER IS PAIN AWARENESS MONTH

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.

From www.migraines.com

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 Migraine^2-4

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.

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.

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

www.bostonglobe.com/lifestyle/health-wellness/2014/permanent-custody-justina-pelletier-awarded-state-massachusetts/puyPhesGkKE6GLid2VM2L/story,html

Go to www.justiceforjustina.com

Sign a petition:

https://petitions.whitehouse.gov/petition/we-petition-doj-criminal-investitation-boston-chidrens-and-massachusetts-dcf-abusing-justina/jgdThjc

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.

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.