Moving Forward

Well week 2 of gluten free went better than the first.  It is so much easier to do it when you are eating out.  My husband could eat what he wanted and I could choose gluten free.  This week I had nothing made of gluten and had no desire for it.

When I am back home, I will have to purchase some gluten free things.  Last weeks cinnamon raisin bread that I made was a hit with my husband as well.  This gives me hope that I can stock the kitchen with things we will both like.

There have been some toxic people causing drama and pulling me away from the work that I love to do.  I will move on.  I am excited to be going to see my grandson in a couple weeks.  I'll be going to RSDSA's conference in Ft Lauderdale Sept 28 so I have so many things to look forward to.

I lost it yesterday.  I should have just walked away but I didn't.  My pain levels were soaring.  I shut off my computer and just enjoyed time with my husband.  Now I have a new outlook on things.  There are people who depend on me and I depend on them.  I can not allow myself to be sucked into their drama again.  I need to delete it and ignore it.

I am sad that my daughter had to see what was written publicly but she knows her mom well.  She was upset for me.

Meanwhile, Ian now has two bottom teeth.  He is starting to work on the top ones too.  Even in this short period, I've missed some milestones.  I'll be going back up soon and will enjoy my time with him.

Thank you to all who have supported me though this difficult week.

Unitity

Earlier this week, I posted that I wanted harmony among the organizations and Facebook groups that help people with CRPS.  I have to admit that after a while, I could not contain myself and was drawn into the mess.

I am truly sorry for getting involved.  I removed it all from my wall.  I can not control what others do but I can control what I do.  It seems that other innocent people were dragged into all of this who didn't know what they were posting was hurtful.

I have a duty to those involved with CRPS Partners In Pain, as the Executive Director, to lead by example.  I did not do that this week.  I let myself get dragged into it all.

Let me clarify a few things.

• CRPS Partners In Pain, inc is a Florida Corporation
• We have our EIN
• Our non-profit status is under review by the IRS and as it usually takes up to a year, by law we can say that we are a non-profit as the status will go back to the beginning; up to three years.

I will hold myself up to a higher level and will not let myself be drawn into these cat fights.  I wish that I had been strong enough not to involve myself from the beginning  These instances have forced me to resign as an admin for my teen to thirty group (not mind but theirs) and has caused me to be removed from the only other group that I was a member of (other than my own) because people feel the need to attack my credibility.

My actions were counter productive in helping the CRPS community work in harmony.  This will not happen again. No matter what they post about me, I will not respond and will continue to ask my friends and colleagues to do the same.

Thank you for your support

Nancy

Pain Awareness Month

September is Pain Awareness Month

We are just ten days from the beginning of September.  September is Pain Awareness Month.  What can we do to spread the fact that pain itself is an illness and not just a symptom of an illness?

• Ask your local library if you can set up an information booth.  Print out some of the flyers available from different non-profits such as: RSDSA.org, crpspartnersinpain.com, US Pain Foundation, etc.
• See if your local pharmacy will allow you to put fliers near the pharmacist counter.
• Talk to people about your pain syndrome
• Have a T-shirt made about your pain condition and use it as a conversation starter.

It is important for those of us with chronic pain conditions to help to educate the general community.  There may be someone that you reach out to who has an undiagnosed pain syndrome.  There may be someone you can educate.

It is difficult for some of us to get out and about.  If you have others in your community with a chronic pain syndrome, see if together you can man a booth at a health fair, county fair or in some of the locations mentioned above.

If you have awareness ideas, please share them with me and my readers.

September 28, 2013 at Great Event

September 28th, 2013 RSDSA.org is sponsoring a wonderful conference in Ft Lauderdale FL.  Such distinguished speakers:  Dr Pradeep Chopra, MD Dr Phillip Getson and Kaitlyn Stevens will be speaking.  The cost is only $25 to register.  I for one am going and would urge anyone in FL and neighboring states to register now. Go to www.rsdsa.org to register.  Don't let this great opportunity pass you by.

The Facebook support group that I administrate has people coming from TX, PA, RI, NC, etc making the trip.  You can get a great hotel rate at the Residence Inn Ft Lauderdale.  Their phone number is 954-723-0300 for a weekend rate of $99 a night.

I hope that you will join me in supporting this wonderful organization and these great speakers.  I can hardly wait to meet them all.

Nancy

Harmony

I do not understand why everyone with organizations helping people with CRPS/RSD feel that it is a competition.  Why can we not work together to help one another?  Why attack others who are trying to help those with CRPS/RSD.

I know that the CRPS community is a representative of society where unfortunately there are people who are nasty and unscrupulis.  You would think that because they know how difficult it is to live with this monster, that they would have more compassion for one another.

I could sit here writing and name names of those who are making it their mission to try to stop CRPS Partners In Pain, Inc and our board from helping others.  I will not stoop to their tactics.  I will not give them the satisfaction of affecting the good work that we are doing for others.

Everyone associated with CRPS Partners In Pain, Inc volunteers their time.  No one take a salary.  We all either have CRPS or have a family member with CRPS.  Every donation goes directly to help those who otherwise would not be able to get treatment.  Additionally, we try to provide information on CRPS/RSD.  RSDSA.org has great research articles and information on learning more about CRPS/RSD.  I support their efforts 100%.  The board of CRPS felt that there was no need to duplicate the fine work that RSDSA.org is doing with research funds and education.  They also have a small fund to help people with RSD catch up with bills and assist with treatment.  We felt that we could be more effective just trying to get those with CRPS who otherwise would not be able to afford treatment some financial assistance.

There are several CRPS/RSD non-profits.  We each need to work together toward the betterment of the CRPS/RSD community.  I freely vow to help any of the other organizations that represent chronic pain patients or specifically RSD.  Some of these organizations are:
www.rsdsa.org
www.rsdhope.org
www.forgrace.org
http://powerofpain.org
US Pain Foundation

As members of the chronic pain community, we need to work together.

Going Gluten Free

Well today I am starting a gluten free diet.  It isn't because I have celiac disease or any known gluten sensitivities.  My PCP suggested going gluten free and preservative free to help with my joint pain.  I was eating preservative free during the four months that I lived with my daughter, son in law and grandson as they eat preservative and organic.  I did all of the cooking.

I ordered a cookbook that arrived today and did some grocery shopping as well.  I am not much of a bread eater.  So cutting out wheat bread shouldn't be a problem.  I actually made a gluten free potato muffing for my "kids" last week and it was very good.  I make a to die for pumpkin cookie recipe which I think that I can substitute the wheat flour with another.

The hardest thing for me to give up is my coke zero.  I brewed a large batch of green tea and started drinking that this morning instead of my morning coke zero.  I hate coffee.

After going gluten free for 8 weeks, I am going to add PurePea which has also been recommended.  I do not want to start both at the same time as then if I feel an improvement, I won't know which one it is.