Monday, May 18, 2015
CRPS Study
For the fist time in a long time, a clinical trial is taking place around the country. For more information go to www.studycrps/com for additional information
Documentary
Great news for those of us with CRPS!! Charles Mattocks is doing a documentary on CRPS. The link to his blog is:
http://www.caregivingcafe.com/blog/2015/05/trial-by-fire-caregiving-for-mother-with-crps-ignites-passion-for-world-advocacy/
I had the honor of having Charles come to my home to interview me and some friends with CRPS/Caregivers. As we all know, we desperately need to get information out there about CRPS that are true. Many doctors, nurses and patients do not have accurate information. This is our chance to get some attention paid to this monster we call CRPS.
http://www.caregivingcafe.com/blog/2015/05/trial-by-fire-caregiving-for-mother-with-crps-ignites-passion-for-world-advocacy/
I had the honor of having Charles come to my home to interview me and some friends with CRPS/Caregivers. As we all know, we desperately need to get information out there about CRPS that are true. Many doctors, nurses and patients do not have accurate information. This is our chance to get some attention paid to this monster we call CRPS.
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.
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.
Memories
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.
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
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
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
- 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.
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.
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.
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