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.
Wednesday, November 14, 2012
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.
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