Wednesday, December 5, 2012
I have been home now for 2 1/2 weeks. Still on a steady course - which is so wonderful.
These past couple have weeks have been like a Caribbean vacation. You arrive at your tropical resort. You see all the great new things the island has to offer that you generally can not do at home. The food prepared by the local chefs tastes better, the lavish gardens contain exotic flowers, the plush towels in your guest room are so much softer than those at your home. At the silky, sandy beach you slowly ease into the beautiful, crystal water. It is a little cold, so you back out a bit, but then inch back in hesitantly and then swim off. However, every so often while you are reading out by the pool, dark grey clouds roll in and a brief shower puts a damper on the day's activities. From then on, you wonder each time you leave your room if the weather will hold out for you while on your excursion. On the whole, you are enjoying your time, but the "what-if the weather ruins my plans?" thoughts are in the back of your mind.
I have been doing so well. (I am almost scared to write this- I do not want to curse myself) So many things that I have always done I feel as if I am experiencing for the first time. My meals actually do taste better. I have an appetite again. I guess eating without a fire inside my body is enjoyable. Hugs-- I know sounds strange. What can be different about a hug? Before a month ago, I would be scared of hugs. People's touch on my body really did hurt. But I never felt comfortable telling everyone -- don't touch me. With each encounter I had I would try to prepare and almost brace myself for a hug. My children's hugs feel like magic now. I almost get chills. Their touch brings me pleasure instead of pain.
The "Caribbean Storm" - I still cannot do it all. (I know no one can) What I mean is I have to really, really pace myself. This is something I do not like doing. When my pain level was extremely high, it was easier to pace. (I didn't like it, but it was blatantly obvious, so really there was no choice) Now, the pain has subsided - it is like a day at the beach - and I can almost pretend to be "normal" I have to continue to keep stopping myself or I really wind up suffering. The pain will return, my knee will swell, and becoming burning hot and change to a weird reddish-purplish color.
If I go to the grocery store - well, that was my activity for the day. No grocery shopping and then browsing the local Bed, Bath & Beyond. If I did the result would that I come home, and it as if I can hardly walk. I think in my head because the pain has subsided that I can do these silly things. I forget - I still have RSD. That has not disappeared and until we discover a cure it never will be out of my life. So nowadays, as much as I do not want to admit it - my days are very carefully planned out. One activity or outing a day - no more. Last week, I was going to go to concert that began at 7 pm. Knowing this, I spent the day quietly at home. That is frustrating to me -- but if I do it this way, I get to go to the concert and really enjoy it.
I am SO VERY grateful for feeling as good as I do right now. It is an amazing high to be able to walk without the feeling of a burning axe in my knee.
When those grey storm clouds are coming over me - I do not know. But for now, I will enjoy my Mai-Tai and soak up the sun.
Wednesday, December 5, 2012
Saturday, November 24, 2012
Home for a week....
Saturday, November 24, 2012
I have been home now for a week. Things are different.
My pain has definitely changed. I know it is there, I can feel it. However it is as if someone has hit the mute button over it. It is just so incredible that I do not feel that I am being doused with gasoline and set afire.
I have been getting around mostly without my cane -- what a freeing feeling.
I have gained a lot more self-confidence. I hate walking with a cane. Being without it one step closer to being "normal"
For reasons I can not explain, my sleep has gotten worse - something I never thought I could say since it was so poor from the start.
I can no longer sleep for more that an hour and 1/2 at a time. That is extremely frustrating.
And I will take the big assumption that this is the reason why I am extremely tired all day.
Now here is the difficult part of being back --- There is not much known about the Calmare treatment. No doubt, I am having a wonderful, positive result. However, the uncertainty of the therapy is making me wild.
It is so hard to be comfortable and happy with my reduced pain when I am constantly thinking of "is this going to last?' "how bad is it going to feel when the pain returns?" "when will that be?"
I used to shake my head and question how could people who found a treatment that helped (no matter what that therapy was) be negative. I could not understand why those people were not jumping for joy at the idea of their pain being reduced. I always said, I would be shouting from the rooftops and dancing until dawn when my pain became more bearable. the idea of being pessimistic about being well seems ridiculous.
Unfortunately, I understand this now.
All I have know for 16 years is pain - extreme pain. Now that it has diminished, it is almost too good to be true. I want it to last - but I know it will not forever. The uncertainty of that time frame can be maddening.
Here is the other tough part -- I feel as if everyone is watching me. My children ask me constantly "are you good?" My friends call and want to know my status daily. Family wants me to do daily check-ins.
Now, I realize all of this comes from people loving me and caring about my well-being. It is so soothing knowing that I have so many people in my corner, rooting for me everyday.
The flip side is that I am getting stressed out answering my loved one's questions. I will tell the members of my village "that I am doing well, and no I do not know when this will wear off."
I have been noticing that every time I have to answer these type of questions, my body starts to stiffen up. Any good feeling I may have been experiencing certainly seems to then dissipate. So, for now on - please do not take offense, but I going back to a standard, "I am doing well, thank you"
Please know I so do appreciate everything you have done - from providing rides for my children, to just a "like" on my facebook status.
I just want to try and make this treatment last as long as possible -
I promise to give status updates.
You can still talk, chat, etc with me -- just let's not lead off with "how is your pain today?"
Have a great weekend.
I have been home now for a week. Things are different.
My pain has definitely changed. I know it is there, I can feel it. However it is as if someone has hit the mute button over it. It is just so incredible that I do not feel that I am being doused with gasoline and set afire.
I have been getting around mostly without my cane -- what a freeing feeling.
I have gained a lot more self-confidence. I hate walking with a cane. Being without it one step closer to being "normal"
For reasons I can not explain, my sleep has gotten worse - something I never thought I could say since it was so poor from the start.
I can no longer sleep for more that an hour and 1/2 at a time. That is extremely frustrating.
And I will take the big assumption that this is the reason why I am extremely tired all day.
Now here is the difficult part of being back --- There is not much known about the Calmare treatment. No doubt, I am having a wonderful, positive result. However, the uncertainty of the therapy is making me wild.
It is so hard to be comfortable and happy with my reduced pain when I am constantly thinking of "is this going to last?' "how bad is it going to feel when the pain returns?" "when will that be?"
I used to shake my head and question how could people who found a treatment that helped (no matter what that therapy was) be negative. I could not understand why those people were not jumping for joy at the idea of their pain being reduced. I always said, I would be shouting from the rooftops and dancing until dawn when my pain became more bearable. the idea of being pessimistic about being well seems ridiculous.
Unfortunately, I understand this now.
All I have know for 16 years is pain - extreme pain. Now that it has diminished, it is almost too good to be true. I want it to last - but I know it will not forever. The uncertainty of that time frame can be maddening.
Here is the other tough part -- I feel as if everyone is watching me. My children ask me constantly "are you good?" My friends call and want to know my status daily. Family wants me to do daily check-ins.
Now, I realize all of this comes from people loving me and caring about my well-being. It is so soothing knowing that I have so many people in my corner, rooting for me everyday.
The flip side is that I am getting stressed out answering my loved one's questions. I will tell the members of my village "that I am doing well, and no I do not know when this will wear off."
I have been noticing that every time I have to answer these type of questions, my body starts to stiffen up. Any good feeling I may have been experiencing certainly seems to then dissipate. So, for now on - please do not take offense, but I going back to a standard, "I am doing well, thank you"
Please know I so do appreciate everything you have done - from providing rides for my children, to just a "like" on my facebook status.
I just want to try and make this treatment last as long as possible -
I promise to give status updates.
You can still talk, chat, etc with me -- just let's not lead off with "how is your pain today?"
Have a great weekend.
Sunday, November 18, 2012
I'm home
Sunday, November 18, 2012
My flight home on Friday was uneventful - just the way I like it.
Steve met me at the airport with flowers. I am so excited to get home and see my kids.
As soon as I opened the door - there stood Alana & Landon (each one holding one of the cats)
I got hugs, kisses and a beautiful card.
I missed home.
Even though I was so anxious to sleep in my own bed, I did not sleep very well. I am not sure exactly why.
Saturday started off lovely - breakfast with my family, couple quick errands, and a trip to Target.
The trip to Target was a milestone for me -- I walked in without my cane!
After a little bit, I did use the cart to lean on but still no cane. The strange part as Alana kept pointing out - I am not sure where to place my hand. I have walked with a cane for so long - that it felt like my left hand was missing something without it. Not to worry - I will get used to it soon.
I may have overdone it a little; I was very worn by late afternoon.
Tomorrow, will be better I am sure.
Saturday night, I fell asleep within minutes of climbing into bed. My sleep lasted for only an hour and 15 minutes. Then I was up until 6:30am. Grrrrr.
Now, I should report - that my pain level is still down. It has not been eliminated. It feels as if someone has hit the mute button on the RSD pain. I hurt, but there is a lot less burning, stabbing pain.
Sunday, picked up kids from religious school with Steve and proceeded to drive to Costco. On the way over (a 10 min trip) I began to feel sick, very sick. So ill in fact that I could not go into Costco. My family went in, and I fell asleep in the car. After a bit, when they came out of the store and woke me I did begin to feel a lot better.
I am starting to realize that maybe the Doctor was right. I need to take things slowly and not overdo anything. I am going to go slow this week - or at least try to. I have cancelled a lot of my plans for the next couple of days - as to be sure to go easy.
I feel as if I am in an awkward situation now. So many people want to know the results of this treatment. I can not give anyone a full report yet. Without a doubt, the Calmare treatment does something. It did lesson my pain, and at times almost eliminate it. Now I just need to hope that this continues on for sometime.
My flight home on Friday was uneventful - just the way I like it.
Steve met me at the airport with flowers. I am so excited to get home and see my kids.
As soon as I opened the door - there stood Alana & Landon (each one holding one of the cats)
I got hugs, kisses and a beautiful card.
I missed home.
Even though I was so anxious to sleep in my own bed, I did not sleep very well. I am not sure exactly why.
Saturday started off lovely - breakfast with my family, couple quick errands, and a trip to Target.
The trip to Target was a milestone for me -- I walked in without my cane!
After a little bit, I did use the cart to lean on but still no cane. The strange part as Alana kept pointing out - I am not sure where to place my hand. I have walked with a cane for so long - that it felt like my left hand was missing something without it. Not to worry - I will get used to it soon.
I may have overdone it a little; I was very worn by late afternoon.
Tomorrow, will be better I am sure.
Saturday night, I fell asleep within minutes of climbing into bed. My sleep lasted for only an hour and 15 minutes. Then I was up until 6:30am. Grrrrr.
Now, I should report - that my pain level is still down. It has not been eliminated. It feels as if someone has hit the mute button on the RSD pain. I hurt, but there is a lot less burning, stabbing pain.
Sunday, picked up kids from religious school with Steve and proceeded to drive to Costco. On the way over (a 10 min trip) I began to feel sick, very sick. So ill in fact that I could not go into Costco. My family went in, and I fell asleep in the car. After a bit, when they came out of the store and woke me I did begin to feel a lot better.
I am starting to realize that maybe the Doctor was right. I need to take things slowly and not overdo anything. I am going to go slow this week - or at least try to. I have cancelled a lot of my plans for the next couple of days - as to be sure to go easy.
I feel as if I am in an awkward situation now. So many people want to know the results of this treatment. I can not give anyone a full report yet. Without a doubt, the Calmare treatment does something. It did lesson my pain, and at times almost eliminate it. Now I just need to hope that this continues on for sometime.
Thursday, November 15, 2012
Almost done
Thursday, November 15, 2012 - Day 10 of treatment
Appointment 1:30pm
Well, I have today and tomorrow left. As excited as I am about going home, I am nervous. I have not gotten a full day of pain relief. I do not want this to be for nothing.
Last night, I was able to fall asleep without being in pain - something I never believed could happen. I slept fairly well too. I was able to sleep a few solid hours. Sleep is really a wonderful thing - I highly recommend it to everyone -- smile.
Today after treatment, I did a little shopping. I am guessing that was not the best choice of activities. I was no longer pain-free. Although I do think the weather was playing a part in that - it looks and feels as if it is about to rain. I went back to the hotel and rested for awhile and I did feel better.
I am packing up my suitcase with my clothes, shoes, make-up and such. I am so hoping that when I leave this hotel room I leave with just what is in that suitcase. I do not want to bring the RSD pain home with me. I have decided there is just no more room for it in my life. My suitcase is heavy enough.
My last treatment is tomorrow morning at 10:30am. Then I will be spending time with my Aunt and Uncle before going to the airport and returning home.
I will update you all over the weekend to let you know these last days went.
Appointment 1:30pm
Well, I have today and tomorrow left. As excited as I am about going home, I am nervous. I have not gotten a full day of pain relief. I do not want this to be for nothing.
Last night, I was able to fall asleep without being in pain - something I never believed could happen. I slept fairly well too. I was able to sleep a few solid hours. Sleep is really a wonderful thing - I highly recommend it to everyone -- smile.
Today after treatment, I did a little shopping. I am guessing that was not the best choice of activities. I was no longer pain-free. Although I do think the weather was playing a part in that - it looks and feels as if it is about to rain. I went back to the hotel and rested for awhile and I did feel better.
I am packing up my suitcase with my clothes, shoes, make-up and such. I am so hoping that when I leave this hotel room I leave with just what is in that suitcase. I do not want to bring the RSD pain home with me. I have decided there is just no more room for it in my life. My suitcase is heavy enough.
My last treatment is tomorrow morning at 10:30am. Then I will be spending time with my Aunt and Uncle before going to the airport and returning home.
I will update you all over the weekend to let you know these last days went.
Wednesday, November 14, 2012
A somewhat "normal" night...
Tuesday, November 13, 2012 - Day 8 of Treatment
Appointment began at 1:30pm
I am back to treatment by myself. I was a little worried wondering if I would take a step backwards not having someone with me this time.
No, not the case -- Shelby (doctor's assistant) was able to start up the therapy right away and at a higher level than prior days.
Shelby kept turning the intensity up bit by bit. I was able to much more today and I was not that uncomfortable.
What came next - is outstanding (at least to me).... I remained RSD pain free until I went to sleep.
I even slept for about 4 hours straight! I woke up for a few hours and then was able to return to sleep.
Strange thing is I am tired - how can that be? I slept so much better and I am tired. That does not make sense.
Wednesday, November 14, 2012 - Day 9 of treatment
Appointment 2:30pm
Doctor is very pleased with my reports of yesterday's results. He wanted to try to move up the intensity just a bit more today.
I was able to handle it - my knee was jumping a drop but nothing too bad.
Doctor and Shelby both happy with the progress of my therapy today.
I am hoping that the results last even longer.
I have two treatment left, thurs. and fri
I am anxious to return to my home. I miss my family there.
Appointment began at 1:30pm
I am back to treatment by myself. I was a little worried wondering if I would take a step backwards not having someone with me this time.
No, not the case -- Shelby (doctor's assistant) was able to start up the therapy right away and at a higher level than prior days.
Shelby kept turning the intensity up bit by bit. I was able to much more today and I was not that uncomfortable.
What came next - is outstanding (at least to me).... I remained RSD pain free until I went to sleep.
I even slept for about 4 hours straight! I woke up for a few hours and then was able to return to sleep.
Strange thing is I am tired - how can that be? I slept so much better and I am tired. That does not make sense.
Wednesday, November 14, 2012 - Day 9 of treatment
Appointment 2:30pm
Doctor is very pleased with my reports of yesterday's results. He wanted to try to move up the intensity just a bit more today.
I was able to handle it - my knee was jumping a drop but nothing too bad.
Doctor and Shelby both happy with the progress of my therapy today.
I am hoping that the results last even longer.
I have two treatment left, thurs. and fri
I am anxious to return to my home. I miss my family there.
Tuesday, November 13, 2012
Back to treatment
Monday, September 12, 2012 - Day 7 of Treatment
Appointment time 2 pm
I am very lucky -- today my two cousins, Ruth and Rhonda accompanied me to therapy. The doctor was not in right away, so the assistant, Shelby (who is as sweet as pie) set me up on the machine. I like when she starts my treatment, because she turns the machine on very gently - smile
The treatment is definitely becoming more tolerable. My leg still shakes a bit, but no more "jumping" out of my seat.
We left treatment, went back to the hotel and played a vicious game of scrabble - and I lost! Ruth is a scrabble shark. We then went out for a wonderful seafood dinner. It was not until we were leaving the restaurant, that I started to feel my knee heating up. I quickly (and probably rudely) interrupted Rhonda and asked her what was the time. It had been over 5 hours!!!!!
I was without pain for 5 hours - it is still unbelievable.
Last night, I even slept a bit better. I was able to sleep for 3 1/2 hours was up for only an hour and then went back to sleep for another 2 hours.
As of right now - I am having positive thoughts.
I will keep you posted.
Next appointment - 1pm Tuesday.
Appointment time 2 pm
I am very lucky -- today my two cousins, Ruth and Rhonda accompanied me to therapy. The doctor was not in right away, so the assistant, Shelby (who is as sweet as pie) set me up on the machine. I like when she starts my treatment, because she turns the machine on very gently - smile
The treatment is definitely becoming more tolerable. My leg still shakes a bit, but no more "jumping" out of my seat.
We left treatment, went back to the hotel and played a vicious game of scrabble - and I lost! Ruth is a scrabble shark. We then went out for a wonderful seafood dinner. It was not until we were leaving the restaurant, that I started to feel my knee heating up. I quickly (and probably rudely) interrupted Rhonda and asked her what was the time. It had been over 5 hours!!!!!
I was without pain for 5 hours - it is still unbelievable.
Last night, I even slept a bit better. I was able to sleep for 3 1/2 hours was up for only an hour and then went back to sleep for another 2 hours.
As of right now - I am having positive thoughts.
I will keep you posted.
Next appointment - 1pm Tuesday.
Sunday, November 11, 2012
My Day Off
Sunday, November 11, 2012
No treatment today. So glad because I am wiped out, I mean completely exhausted. I think it is just been because it has been a whirlwind of a week for me and everything is starting to catch up.
I am going to take it very easy today, rest, relax - visit with my family.
As you are still continuing to read my blog, you have shown some concern in my welfare. I (and my family) so appreciate your support, thoughts, and warm wishes.
I realized that many of you might not know exactly what RSD is - here is a brief overview:
Reflex Sympathetic Dystrophy, RSD, is now referred to as Complex Regional Pain Syndrome, CRPS. CRPS is a progressive disease of the Autonomic Nervous System. The pain is characterized as constant, extremely intense, and out of proportion to the original injury. The pain is typically accompanied with swelling, skin changes, sensitivity and can often be debilitating. It usually affects one or more of the four limbs but can occur in any part of the body.
CRPS is ranked as the most painful form of chronic pain that exists today by the McGill Pain Index
There are 4 Main Symptoms/Criteria of CRPS:
1. Constant chronic burning pain (including allodynia - extreme sensitivity to touch, sound, and vibration)
2. Inflammation (this can effect the appearance of the skin, bruising, mottling, etc)
3. Spasms - in blood vessels and muscles of the extremities
4. Insomnia/Emotional Disturbance (includes the major changes to the limbic system such as short-term memory problems, concentration difficulties, etc)
No treatment today. So glad because I am wiped out, I mean completely exhausted. I think it is just been because it has been a whirlwind of a week for me and everything is starting to catch up.
I am going to take it very easy today, rest, relax - visit with my family.
As you are still continuing to read my blog, you have shown some concern in my welfare. I (and my family) so appreciate your support, thoughts, and warm wishes.
I realized that many of you might not know exactly what RSD is - here is a brief overview:
Reflex Sympathetic Dystrophy, RSD, is now referred to as Complex Regional Pain Syndrome, CRPS. CRPS is a progressive disease of the Autonomic Nervous System. The pain is characterized as constant, extremely intense, and out of proportion to the original injury. The pain is typically accompanied with swelling, skin changes, sensitivity and can often be debilitating. It usually affects one or more of the four limbs but can occur in any part of the body.
CRPS is ranked as the most painful form of chronic pain that exists today by the McGill Pain Index
There are 4 Main Symptoms/Criteria of CRPS:
1. Constant chronic burning pain (including allodynia - extreme sensitivity to touch, sound, and vibration)
2. Inflammation (this can effect the appearance of the skin, bruising, mottling, etc)
3. Spasms - in blood vessels and muscles of the extremities
4. Insomnia/Emotional Disturbance (includes the major changes to the limbic system such as short-term memory problems, concentration difficulties, etc)
for those of you who may want to learn more about RSD/CRPS, I encourage you to visit:
http://www.rsdsa.org
or
http://www.rsdhope.org
Saturday, November 10, 2012
My "distractions"
Saturday, November 10, 2012 - Day 6 of Calmare Treatment
Slept from 11:30 pm through 1:20am. I was up through 7:30am. Insomnia has become a very annoying friend thanks to RSD. Although, I am very grateful that I now am able to sleep in bigger time blocks (anywhere from 1:15mins - 3:30hours). I used to only sleep on 45 minute cycles. So, I do truly appreciate any step in the right direction.
Appointment - 2:00pm
We started basically at the same trigger points as yesterday. Everyday I have been trying to find something to distract me during therapy. Today - was the best!!!!!! My cousin Steva was there chatting with me the entire time and surprise ---- my sister came to Connecticut as well. So, three girls catching up and being silly - really helped even when it felt like the doctore was trying to set me afire.
I do not think I had any change in my right shoulder today. However, after treatment, I was RSD pain free for 3 1/2 hours. Still, the first rection I have when the therapy session is over is one of oddness. My knee feels as if it is not mine. It is so hard to descibe what I am feeling. I wish I had the words.
Today, I felt the pain coming back on slowly. It was a bit better than the past few days when the pain just came back full force. I am thinking these are all good signs.
I take a break from treatment tomorrow. Yay.
Slept from 11:30 pm through 1:20am. I was up through 7:30am. Insomnia has become a very annoying friend thanks to RSD. Although, I am very grateful that I now am able to sleep in bigger time blocks (anywhere from 1:15mins - 3:30hours). I used to only sleep on 45 minute cycles. So, I do truly appreciate any step in the right direction.
Appointment - 2:00pm
We started basically at the same trigger points as yesterday. Everyday I have been trying to find something to distract me during therapy. Today - was the best!!!!!! My cousin Steva was there chatting with me the entire time and surprise ---- my sister came to Connecticut as well. So, three girls catching up and being silly - really helped even when it felt like the doctore was trying to set me afire.
I do not think I had any change in my right shoulder today. However, after treatment, I was RSD pain free for 3 1/2 hours. Still, the first rection I have when the therapy session is over is one of oddness. My knee feels as if it is not mine. It is so hard to descibe what I am feeling. I wish I had the words.
Today, I felt the pain coming back on slowly. It was a bit better than the past few days when the pain just came back full force. I am thinking these are all good signs.
I take a break from treatment tomorrow. Yay.
Friday, November 9, 2012
The weekend approaches
Friday, November 9, 2012 - Day 5:
Appointment - 11 am
I will get right into it..... leads (electrodes) went on my knee and shoulder. The Doctor was able to start me off on a higher intensity level right away. The shocks of the treatment definitely still hurt but maybe I am just learning to tolerate it more with each day of therapy.
Therapy is over after an hour as usual.
I am now back at the hotel -- I can report to you I remained without any pain for almost 3 hours.
The doctor has decided to add an extra treatment (in addition to the scheduled 10), so he will meet me and open the office for me tomorrow afternoon.
My cousin, Steva is driving down from Maine tonight to spend the weekend with me here in Connecticut. I am so looking forward to spending time with her - I am also going to get to see my cousin Zachary, who is asked us to pick him up at college so that he can visit as well.
The weather is warming up, my pain-free experiences seem to be getting longer, I get to visit with my family ---- I am thinking that things are looking up!
Appointment - 11 am
I will get right into it..... leads (electrodes) went on my knee and shoulder. The Doctor was able to start me off on a higher intensity level right away. The shocks of the treatment definitely still hurt but maybe I am just learning to tolerate it more with each day of therapy.
Therapy is over after an hour as usual.
I am now back at the hotel -- I can report to you I remained without any pain for almost 3 hours.
The doctor has decided to add an extra treatment (in addition to the scheduled 10), so he will meet me and open the office for me tomorrow afternoon.
My cousin, Steva is driving down from Maine tonight to spend the weekend with me here in Connecticut. I am so looking forward to spending time with her - I am also going to get to see my cousin Zachary, who is asked us to pick him up at college so that he can visit as well.
The weather is warming up, my pain-free experiences seem to be getting longer, I get to visit with my family ---- I am thinking that things are looking up!
Thursday, November 8, 2012
After the storm
Thursday, November 8, 2012 - Day 4:
Well, the snow did melt by the afternoon - mostly because it has been lightly raining.
Appointment - 1:45 pm. Today Dr. Sheehan decided to try changing the pattern of the electrodes on my right knee.
Turned on machine - my knee shook/spasmed immediately. He had to adjust the electrodes a bit. Doctor believes the electrodes are causing the allodynia in my knee (allodynia - is a pain due to a stimulus which does not normally provoke pain. Temperature or physical stimuli can provoke allodynia, and it often occurs after injury to a site) to go into hyperdrive.
I had an hour of Calmare treatment today. Within 15-20 minutes of starting the therapy, again my RSD pain seemed to diminish.
The treatment itself hurts. It feels as if you are constantly being burned by a curling iron and then every few moments the iron shorts out and - and them every few minutes the doctor turns the intensity up higher.
I am trying to still "distract" myself -- that is so much easier said than done. I tried to read a magazine, but to absolutely no avail. Besides the fact that I have been having trouble reading since my RSD invaded my right eye, every time my knee spasmed, I would lose my place in the article. Tomorrow, maybe I will try listening to music. I am up for any ideas.
Well - results for today....after treatment I went an hour and forty-five minutes with no RSD pain!!!!! It it so incredible to walk and not feel pain with every step.
When the silence of pain wore off -- the pain came back at such a full force. I could not even stand anymore. I sat down and rested for about an hour. The pain subsided back down to a 5 (out of 10). I was able to resume my "normal" day.
Each day - the length of pain-free time seems to get longer. Maybe tomorrow it will be 2+ hours?
I will let you know.
Well, the snow did melt by the afternoon - mostly because it has been lightly raining.
Appointment - 1:45 pm. Today Dr. Sheehan decided to try changing the pattern of the electrodes on my right knee.
Turned on machine - my knee shook/spasmed immediately. He had to adjust the electrodes a bit. Doctor believes the electrodes are causing the allodynia in my knee (allodynia - is a pain due to a stimulus which does not normally provoke pain. Temperature or physical stimuli can provoke allodynia, and it often occurs after injury to a site) to go into hyperdrive.
I had an hour of Calmare treatment today. Within 15-20 minutes of starting the therapy, again my RSD pain seemed to diminish.
The treatment itself hurts. It feels as if you are constantly being burned by a curling iron and then every few moments the iron shorts out and - and them every few minutes the doctor turns the intensity up higher.
I am trying to still "distract" myself -- that is so much easier said than done. I tried to read a magazine, but to absolutely no avail. Besides the fact that I have been having trouble reading since my RSD invaded my right eye, every time my knee spasmed, I would lose my place in the article. Tomorrow, maybe I will try listening to music. I am up for any ideas.
Well - results for today....after treatment I went an hour and forty-five minutes with no RSD pain!!!!! It it so incredible to walk and not feel pain with every step.
When the silence of pain wore off -- the pain came back at such a full force. I could not even stand anymore. I sat down and rested for about an hour. The pain subsided back down to a 5 (out of 10). I was able to resume my "normal" day.
Each day - the length of pain-free time seems to get longer. Maybe tomorrow it will be 2+ hours?
I will let you know.
Wednesday, November 7, 2012
Storm is coming.....
Wednesday, November 7 - Day 3:
Yesterday after returning to the hotel, I was in a lot of pain. I tried to rest with not much success. Then about 1 pm, I was able to drift off to sleep (thank goodness). I slept for a couple of hours and when I awoke my pain level had diminished a bit.
That night, I was able to sleep for about 3 hours straight -- pretty good for me.
Appointment 9:30 am- electrodes are being moved slightly around my knee. Still painful, but it is more tolerable that the past few days. Wow- twenty minutes into treatment -- the treatment itself it hurting, but I feel absolutely no RSD pain in my knee. It is so unbelievable. It is such an odd feeling. I never thought not feeling RSD pain would be strange. 16 years always feeling a burning, stabbing, throbbing, jabbing pain I guess has become my norm.
Th electrodes on my right shoulder feel awfully strong today though. Although I came into the office with my shoulder pain greater than it has been for the last few days.
I should mention that a big storm is brewing here. They are predicting snow, slush, rain and temperatures in the 20's --- ahhhh! Why do people choose to live in this freezing ice cube? I know, I know, I did it for my whole life too - there are beautiful things up here too.
So far, so good. I am driving Steve to the airport - still calmness in my knee, it is unbelievable. About 25 minutes into our trip, almost to the airport, Steve says to me "your pain is back, right" I had not even said a word yet. He said that he could tell immediately. Even though I didn't say anything and I was still smiling, talking, my whole body language changed. So today - I got 25 minutes of post-treatment relief.
Last night, my uncle gave me a snow brush and ice scraper for the car. He told me I will need it. I have not used one of those for over 7 years!
Well, my uncle was right. Not five minutes after I dropped Steve off did it start to flurry. From flurries right to stick to the ground snow. I remembered quickly why we moved from New York --- walking in the snow is extremely scary. My first step out of the car, I almost slipped right down. My cane slipped right on the wet snow.
I had planned to try and do a few things today, but I just could not risk walking in the snow (again, another reason we had to move south).
So I have a 1,000 piece puzzle , unlimited free coffee and hopefully a good movie to watch back at the hotel.
Tomorrow - my appointment is not until the afternoon. Hopefully all the snow will have melted by then.
Yesterday after returning to the hotel, I was in a lot of pain. I tried to rest with not much success. Then about 1 pm, I was able to drift off to sleep (thank goodness). I slept for a couple of hours and when I awoke my pain level had diminished a bit.
That night, I was able to sleep for about 3 hours straight -- pretty good for me.
Appointment 9:30 am- electrodes are being moved slightly around my knee. Still painful, but it is more tolerable that the past few days. Wow- twenty minutes into treatment -- the treatment itself it hurting, but I feel absolutely no RSD pain in my knee. It is so unbelievable. It is such an odd feeling. I never thought not feeling RSD pain would be strange. 16 years always feeling a burning, stabbing, throbbing, jabbing pain I guess has become my norm.
Th electrodes on my right shoulder feel awfully strong today though. Although I came into the office with my shoulder pain greater than it has been for the last few days.
I should mention that a big storm is brewing here. They are predicting snow, slush, rain and temperatures in the 20's --- ahhhh! Why do people choose to live in this freezing ice cube? I know, I know, I did it for my whole life too - there are beautiful things up here too.
So far, so good. I am driving Steve to the airport - still calmness in my knee, it is unbelievable. About 25 minutes into our trip, almost to the airport, Steve says to me "your pain is back, right" I had not even said a word yet. He said that he could tell immediately. Even though I didn't say anything and I was still smiling, talking, my whole body language changed. So today - I got 25 minutes of post-treatment relief.
Last night, my uncle gave me a snow brush and ice scraper for the car. He told me I will need it. I have not used one of those for over 7 years!
Well, my uncle was right. Not five minutes after I dropped Steve off did it start to flurry. From flurries right to stick to the ground snow. I remembered quickly why we moved from New York --- walking in the snow is extremely scary. My first step out of the car, I almost slipped right down. My cane slipped right on the wet snow.
I had planned to try and do a few things today, but I just could not risk walking in the snow (again, another reason we had to move south).
So I have a 1,000 piece puzzle , unlimited free coffee and hopefully a good movie to watch back at the hotel.
Tomorrow - my appointment is not until the afternoon. Hopefully all the snow will have melted by then.
Tuesday, November 6, 2012
The beginning of my journey....
So many of you know, after months of research, I have decided to try a new treatment/therapy to treat my Reflex Sympathetic Dystrophy now being called Complex Regional Pain Syndrome (RSD/CRPS)
The treatment is called: Calmare Therapy.
Calmare Therapy is a non-invasive, non-pharmaceutical solution for pain control. It uses biophysical “scrambler” technology, a type of treatment for nerve pain that uses electrodes placed on the skin. Very low doses of electricity are transmitted from the electrodes through the skin to block the pain. A 'no-pain' message is transmitted to the nerve via disposable surface electrodes applied to the skin in the region of the patient's pain. The perception of pain is cancelled when the no-pain message replaces that of pain, by using the same pathway through the surface electrodes in a non-invasive way.
There are only eight centers in the US that are currently using this therapy, after careful consideration, I have chosen to be treated by Dr. Sheehan in Glastonbury, CT.
Leaving my family for the next couple of weeks I think is going to be the hardest part.
Monday, November, 5 2012 - Day 1: Traveled to Glastonbury, CT.
Was met at airport by Auntie Donna and Uncle Alan. So good to see them. (That is the perk of this trip - I will get to see my family). Had a great lunch with them at a landmark restaurant, Rein's Deli.
3pm - Appointment at the pain center. Met with Dr. Sheenhan, went through orientation, began Calmare treatment.
Oh my gosh --- torture! It was an hour of sheer torture. I felt as if I was being electrocuted over and over. The sad part is, the doctor told me the machine was only turned on a little. Steve told me not to be a martyr and to tell the doctor to turn the machine down even lower if I can't handle it. I just tried to grin and bear it.
What happened next is what is amazing -- the doctor went to touch my knee (something NO ONE can do, without me kicking them) and I didn't even flinch.
He took the electrodes off, my knee felt odd, the pain was different -- no stabbing, burning, no throbbing, it hurt but not like "regular" RSD pain. It was so much less. A LOT less.
We left the office, walked to the car, sat in car for a bit, Steve and I chatted for a bit. Within 10 minutes, my pain didn't just return it came back stronger than what it was that morning. The doctor had indicated that this was a possible outcome.
By the way, it is freezing here! I do not mean cold - I mean freezing! I know I used to live up north, but apparently living in the South for seven years has thinned out my blood. It was 32 degrees.
Tuesday, November 6 2012 - Day 2:
Frost on the car windows - brrrr.
Appointment 10 am
4 electrodes surrounding my right knee and 2 around my right shoulder.
Again --- owwwww. Especially the two right above my knee. My leg was having spasms and twitching from the pain of the treatment for the entire hour. On many occasions I just wanted to rip the electrodes off. I put a blanket on my leg to "distract" myself. Dr. Sheehan stayed in the room chatting with me for most of my session which was very nice.
After an hour - that wonderful "beep" sounded indicating that the session was over and the machine shut down.
The electrodes were taken off - and again - there was an eerie feeling. I think this eerie feeling maybe what no pain/ little pain feels like. I am not sure. I have suffered since 1996. So, not being in pain is something I am not used to feeling. We left, and began driving to hotel. About 15 minutes later- I learned what that eerie feeling was -- it must have been what little to no pain feels like -- because my RSD pain came back on instantly. I went from almost nothing to an 8 (out of 10).
It took me by such shock. I was so upset. Steve is looking at this as a positive thing, saying that the treatment is doing something - it obviously is beginning to "scramble" my brain signals. It is trying to send a "no pain" signal to my brain replacing the current "constant pain" signal that RSD has created.
Me, at the moment, all I can think about is how much pain I am in - so it is hard to focus on any thing else.
Came back to hotel, going to try and rest.
The treatment is called: Calmare Therapy.
Calmare Therapy is a non-invasive, non-pharmaceutical solution for pain control. It uses biophysical “scrambler” technology, a type of treatment for nerve pain that uses electrodes placed on the skin. Very low doses of electricity are transmitted from the electrodes through the skin to block the pain. A 'no-pain' message is transmitted to the nerve via disposable surface electrodes applied to the skin in the region of the patient's pain. The perception of pain is cancelled when the no-pain message replaces that of pain, by using the same pathway through the surface electrodes in a non-invasive way.
There are only eight centers in the US that are currently using this therapy, after careful consideration, I have chosen to be treated by Dr. Sheehan in Glastonbury, CT.
Leaving my family for the next couple of weeks I think is going to be the hardest part.
Monday, November, 5 2012 - Day 1: Traveled to Glastonbury, CT.
Was met at airport by Auntie Donna and Uncle Alan. So good to see them. (That is the perk of this trip - I will get to see my family). Had a great lunch with them at a landmark restaurant, Rein's Deli.
3pm - Appointment at the pain center. Met with Dr. Sheenhan, went through orientation, began Calmare treatment.
Oh my gosh --- torture! It was an hour of sheer torture. I felt as if I was being electrocuted over and over. The sad part is, the doctor told me the machine was only turned on a little. Steve told me not to be a martyr and to tell the doctor to turn the machine down even lower if I can't handle it. I just tried to grin and bear it.
What happened next is what is amazing -- the doctor went to touch my knee (something NO ONE can do, without me kicking them) and I didn't even flinch.
He took the electrodes off, my knee felt odd, the pain was different -- no stabbing, burning, no throbbing, it hurt but not like "regular" RSD pain. It was so much less. A LOT less.
We left the office, walked to the car, sat in car for a bit, Steve and I chatted for a bit. Within 10 minutes, my pain didn't just return it came back stronger than what it was that morning. The doctor had indicated that this was a possible outcome.
By the way, it is freezing here! I do not mean cold - I mean freezing! I know I used to live up north, but apparently living in the South for seven years has thinned out my blood. It was 32 degrees.
Tuesday, November 6 2012 - Day 2:
Frost on the car windows - brrrr.
Appointment 10 am
4 electrodes surrounding my right knee and 2 around my right shoulder.
Again --- owwwww. Especially the two right above my knee. My leg was having spasms and twitching from the pain of the treatment for the entire hour. On many occasions I just wanted to rip the electrodes off. I put a blanket on my leg to "distract" myself. Dr. Sheehan stayed in the room chatting with me for most of my session which was very nice.
After an hour - that wonderful "beep" sounded indicating that the session was over and the machine shut down.
The electrodes were taken off - and again - there was an eerie feeling. I think this eerie feeling maybe what no pain/ little pain feels like. I am not sure. I have suffered since 1996. So, not being in pain is something I am not used to feeling. We left, and began driving to hotel. About 15 minutes later- I learned what that eerie feeling was -- it must have been what little to no pain feels like -- because my RSD pain came back on instantly. I went from almost nothing to an 8 (out of 10).
It took me by such shock. I was so upset. Steve is looking at this as a positive thing, saying that the treatment is doing something - it obviously is beginning to "scramble" my brain signals. It is trying to send a "no pain" signal to my brain replacing the current "constant pain" signal that RSD has created.
Me, at the moment, all I can think about is how much pain I am in - so it is hard to focus on any thing else.
Came back to hotel, going to try and rest.
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