I have not kept up on my journaling of my fight over pain. Before Thanksgiving, I had my Neurostimulator programs adjusted. I now have 8 programs, although some of the middle programs are just there - not new and I think the same as the other programs. I tried several of the new programs, and just returned to my favorite program, which is now program 3 (it used to be program 1). I tried these different programs because I could not get any relief from my pain, anywhere in my body. From this I learned, sometimes pain is just that - pain. That being the case, it is just not going to be relieved. This pain was caused by medication I received for a MRSA infection. I had gone to the grocery store, and when I came home I thought I had gotten a bug bite, because I was really itchy on my lower middle back, and I had a small pimple type bump on my lower left butt cheek (really itchy there!) By the morning this "pimple" was a lump the size of a quarter, and it kept growing! It got so uncomfortable and large, I went into my doctor on a Saturday and got Doxycyclin. I soaked, and used moist heating pads, and I hurt all over. I tried and tried to get the device to cover the (literally) pain on my butt-to no avail! My bones hurt, my spine hurt, everything hurt, and pain pills did nothing for any of my pain. The medication completely killed my desire to eat or drink, and began causing stomach problems. I returned to the doctor on Monday, by which time we had named the lump Hugo, and it was the size of a baseball, and the whole left side of my butt was affected. The nurse practitioner called in the doctor I saw Saturday, and they pushed and poked Hugo. To say the least, this angered Hugo! They told me I most likely had MRSA and gave me a second medication, Ramifin (?). This medication made me very, very nauseated and I couldn't eat or drink. I returned to the doctor on the Wednesday prior to Thanksgiving to have Hugo checked and poked. He was starting to get smaller, he was definitely MRSA, and the doctor said to keep taking both medications - regardless! That evening, I was in so much pain I was rolled up in a ball and couldn't move without excruciating pain. I held on to the Neurostimulator remote and tried every setting to get some relief. Nothing helped, but I tried, by taking more Tylenol, Advil and Percoset. Then the nausea took over and I told my husband I was not taking the Ramifin again. After 8 hours of dry heaving, he agreed, and I considered going to the hospital. We missed Thanksgiving, and I never took Ramifin again. I was really dehydrated, and in excruciating pain all over my body. Hugo was doing better, I still could not sit, but I soaked and soaked all day through Friday. By Friday, I had eaten 2 Ritz crackers, but I drank Gatorade and started feeling a little better. I checked both medications on WebMD for side effects, and found that Ramifin said not to take narcotics with the medication. That explained why I wasn't getting relief from the pain meds! I did not take the Doxycyclin again, since I had every side effect and I decided I would rather have MRSA then take those medications. We missed tree decorating on Saturday, but Hugo continued to get smaller and softer. I went back to the doctor on Tuesday (after Thanksgiving) and Hugo was down to about golf ball size. My doctor told me, I should have called, and I should have gone to the hospital, there were many other medications that could have been given through IV. My bad! Once I had stopped both medications I started feeling better, the all over pain was going away, and my Neurostimulator was helping. I got a 14 day prescription for Levaflaxin in hope that Hugo would continue to go away.
I am back to "normal" now - spinal pain is being helped and is responsive to the Neurostimulator, for which I am immensely thankful. Hugo is almost gone. I will not miss him. The whole experience was awful, and made me realize that sometimes the cure is much worse than the problem!
There is a point where I must learn that new pain is not the Neurostimulator failing, but it is there for a reason, and will likely not be permanent.
Tuesday, December 10, 2013
Tuesday, November 19, 2013
It Is Still Day to Day
Feeling better, and having freedom over pain is a day to day challenge. Some days I am simply not up to the challenge. The weather appears to be a big factor in arthritis and Fibromyalgia pain, and the Neurostimulator just doesn't help those aches and pains. The last 5 days I have gone about my plans, regardless of these or any other pains. Yesterday I gave in to the exhaustion and rested. Before resting, I went to Barnes & Noble to get several items. This was very enjoyable, and energized my soul. I bought the 25th anniversary edition of "The Polar Express" for a grandchild my husband and I plan on seeing when he reaches his "majority"! This allows my soul to be at peace. I write to him in a journal, make cards on holidays and include cash, and I have a box of things that he can have when he is older. We count him as a grandchild, because he is. A child should never be held responsible for a parent's stupidity! I am doing "The Elf on the Shelf" at grandma & grandpa's. This got me excited, and it will give me something to look forward to every day for a month, while I take pictures of the elves doing naughty things at grandma & grandpa's. The elves will be part of the items he will get when we meet him - that and a lot of money!
I enjoyed my trip to Barnes & Noble, I felt normal. I walked around without a cart or walker, and although I started hurting, it was quite manageable. By the time I got home I was ready to give in to the pain, it had gotten the better of me. I read in bed for part of the day. My mind remained active, although my body said --nope! The interesting thing I find about being so physically exhausted, is my inability to sleep. Today, may be another rest day, after the exterminator leaves.
On my last visit to Dr. Carlson, my pain specialist, I asked for a lower dose of pain medication. Oops! The lower dose doesn't take away all of the different pains I have. So I am still in pain when I am ready for another dose. After a few days of this, I found myself getting very irritable, because I just never felt all the way better. Pain is relative, you either feel it or you don't. I may have requested a lower dose to early. I have felt so much less pain since having the Neurostimulator, that I foolishly forgot about "other" pain.
Living pain free is my goal! I guess I may have to lose weight also ---- but that is for next time!
I enjoyed my trip to Barnes & Noble, I felt normal. I walked around without a cart or walker, and although I started hurting, it was quite manageable. By the time I got home I was ready to give in to the pain, it had gotten the better of me. I read in bed for part of the day. My mind remained active, although my body said --nope! The interesting thing I find about being so physically exhausted, is my inability to sleep. Today, may be another rest day, after the exterminator leaves.
On my last visit to Dr. Carlson, my pain specialist, I asked for a lower dose of pain medication. Oops! The lower dose doesn't take away all of the different pains I have. So I am still in pain when I am ready for another dose. After a few days of this, I found myself getting very irritable, because I just never felt all the way better. Pain is relative, you either feel it or you don't. I may have requested a lower dose to early. I have felt so much less pain since having the Neurostimulator, that I foolishly forgot about "other" pain.
Living pain free is my goal! I guess I may have to lose weight also ---- but that is for next time!
Friday, November 15, 2013
I Wish I Could Be Pain Free All Over!
Happy Friday! Off to a card making group in a bit, and hoping my hands make it. I wish the Neurostimulator could help all over my body! My hands are full of pain -- even my cuticles feel arthritic! My knuckles are getting bigger, and it is hard to straighten my thumbs. My palms are swollen also! The places I walk into doors and walls at night hurt also --- I should open my eyes! My hips are of great concern. I had shots on both sides - and I am still waiting for relief. My ankles hurt - but not consistently - just a surprise here and there! My shoulders and upper arms are arguing with my hips about which bone gets a new joint first! Finally, I am burning from the inside out. Welcome to Fibromyalgia land! I keep thinking I should write this "attack" on my calendar, in case it happens on the same days next year.
I won't be able to take a muscle relaxer until later, because I won't drive with that medication. When I get to the group I am making cards with, I will take Tylenol, Motrin, and a pain pill - reduced dose, and it will have worn off by the time I leave to drive home.
No alarm clocks for two days!
What I saw when I left my home today --- there were 6!
I won't be able to take a muscle relaxer until later, because I won't drive with that medication. When I get to the group I am making cards with, I will take Tylenol, Motrin, and a pain pill - reduced dose, and it will have worn off by the time I leave to drive home.
No alarm clocks for two days!
What I saw when I left my home today --- there were 6!
The one that was on my 6' block fence last night was probably with these guys!
Monday, November 11, 2013
Quite An Experience!
Yesterday I had some girlie time with my DIL Stephanie and my sweet (hahaha) granddaughter Naomi. We haven't gone out together in awhile, so this was a special time! To prepare for walking around I typically turn up my Neurostimulator "BuuZZ", and take the "up/down" remote. When we got to Marshalls I found the Neurostimulator was too high, so I took out the remote and attempted to change it. The IPG could not be found! Scared me! I changed locations to just inside the door, and tried several more times. Frustrated and ready to give up and shop, I went to find Stephanie and Naomi. Being slightly (haha) OCD, I tried again and it worked fine! I was about 25' from the door this time. My conclusion, the Neurostimulator is affected by whatever Marshalls had going on in the doorway! I figure it could be magnetism or theft detection programs --- but it was very scary!
I didn't try to make changes at Bed, Bath and Beyond, or Target - maybe next time.
Joann's has 60% off coupons today --- guess where I am going!
I didn't try to make changes at Bed, Bath and Beyond, or Target - maybe next time.
Joann's has 60% off coupons today --- guess where I am going!
Thursday, November 7, 2013
When You're Happy and You Know it.......
Yesterday I continued to try out program #3, and found it just wasn't what I needed. I know exactly where I need to feel the stimulation to help my pain, and not have the Neuorstimulator cause discomfort. I also tried out program#5 because it appears to concentrate on my right leg, which is where my current pain is. Although this helped somewhat, it wasn't what I needed. So, I went back to program #1. I think some programming is in order, this time I am bringing my belly band!
This morning I took a drive to a Stampin Up friend's home to pick up some card kits. I have not seen her in a few months, and she said I looked great! Amazing what less pain does for your face! Happy dance! We stood (operative word - stood!) and talked for awhile, and it was marvelous to feel independent and capable of having a life again! I am still not up to attending her card workshop coming up next weekend. Four hours on hard chairs just isn't on my capability chart yet. Then, I went to a local scrapbooking store where another card making friend works. She told me I was looking good also! Another happy dance! I love craft stores! I have not been there in months, but I am enrolled in a class there on the 16th. I walked around without a walker for about 15 minutes, picking wonderful paper to purchase, and a few totally awesome rubber stamps. They carry a line of sarcastic rubber stamps! Missed that opportunity! I ignored the pain rising, which in hindsight was not such a good idea. The first thing I noticed was heat and nausea. I stopped, paid and left. Well not before I took a mini Snickers bar for the ride home! I knew the pain was coming, but pushed on. I usually pay the price for doing this, but there was pretty paper!
So now I am going to rest for about an hour - read - rest, interchangeable! It is unlikely that I will make it past noon before I feel the need for pain meds. Totally worth it! Still doing the happy dance! People who have known me for awhile, and have seen me suffering, recognize the difference in me! THAT is worth a happy dance!
Off to rest! OH - I have to charge the Neurostimulator today!
This morning I took a drive to a Stampin Up friend's home to pick up some card kits. I have not seen her in a few months, and she said I looked great! Amazing what less pain does for your face! Happy dance! We stood (operative word - stood!) and talked for awhile, and it was marvelous to feel independent and capable of having a life again! I am still not up to attending her card workshop coming up next weekend. Four hours on hard chairs just isn't on my capability chart yet. Then, I went to a local scrapbooking store where another card making friend works. She told me I was looking good also! Another happy dance! I love craft stores! I have not been there in months, but I am enrolled in a class there on the 16th. I walked around without a walker for about 15 minutes, picking wonderful paper to purchase, and a few totally awesome rubber stamps. They carry a line of sarcastic rubber stamps! Missed that opportunity! I ignored the pain rising, which in hindsight was not such a good idea. The first thing I noticed was heat and nausea. I stopped, paid and left. Well not before I took a mini Snickers bar for the ride home! I knew the pain was coming, but pushed on. I usually pay the price for doing this, but there was pretty paper!
So now I am going to rest for about an hour - read - rest, interchangeable! It is unlikely that I will make it past noon before I feel the need for pain meds. Totally worth it! Still doing the happy dance! People who have known me for awhile, and have seen me suffering, recognize the difference in me! THAT is worth a happy dance!
Off to rest! OH - I have to charge the Neurostimulator today!
Wednesday, November 6, 2013
Program #3
On my second "setting" meeting after my Neurostimulator was turned on, my St. Jude rep Steve Sharkey and I worked on settings. I wanted several choices, and he gave me 5 programs. Apparently with each program I can set the overall buzz (don't know what else to call it!") and then set the level of power I need. Prior to 1 week ago I did not need much power to solve my pain issues, however, this changed and I have been needing more adjustments. Although having to frequently adjust the Neuorstimulator is "bulky" and a general "pain in the ass" - compared to mind numbing pain --- it is an absolute pleasure!!!!
When Steve set my Neuorstimulator's programs, he gave me a printout with information about the programs. The information is relatively easy to use as a comparison of programs, and if there are people contemplating having a Neurostimulator implanted, or readers who already have one, I would encourage you to spend some time with your St. Jude rep and set several programs and get a printout. I am very grateful that Steve has the willingness to work with me on having this device function successfully. I have come to realize that understanding how the Neuorstimulator works for me is different than how it works for anyone else.
My leg pain persists and I have found the place on my back that likely causes it. Since I had previously taken a series of shots, it is difficult to remember which one helped this problem, but my best guess now is the epidural shot. My next appointment with Dr. Carlson isn't for 2 weeks, so this gives me time to further pin point the location.
This morning I am doing my laundry! My washer and dryer are both low and deep on the inside, so I use a grab it tool. This tool is an essential part of my day, since I drop things CONSTANTLY! I don't bend to do this, I don' stretch or twist either. The key is patience. One item at a time, brought up to a level I can reach. This is harder with wet items, but still one item at a time makes it do-able. And I enjoy a bit of independence in my day.
Despite doing laundry, today is a rest day for me. My favorite candles are lit, my house is scented with Mulled Cider, Apple, and Cobbler on the Porch! These are relaxing fragrances for me. I used to bake often. I haven't done much of that in years, and more than the baking I miss the aroma.
Off to finish my morning website viewing - good day, and if you cannot be pain free - may it be manageable.
When Steve set my Neuorstimulator's programs, he gave me a printout with information about the programs. The information is relatively easy to use as a comparison of programs, and if there are people contemplating having a Neurostimulator implanted, or readers who already have one, I would encourage you to spend some time with your St. Jude rep and set several programs and get a printout. I am very grateful that Steve has the willingness to work with me on having this device function successfully. I have come to realize that understanding how the Neuorstimulator works for me is different than how it works for anyone else.
My leg pain persists and I have found the place on my back that likely causes it. Since I had previously taken a series of shots, it is difficult to remember which one helped this problem, but my best guess now is the epidural shot. My next appointment with Dr. Carlson isn't for 2 weeks, so this gives me time to further pin point the location.
This morning I am doing my laundry! My washer and dryer are both low and deep on the inside, so I use a grab it tool. This tool is an essential part of my day, since I drop things CONSTANTLY! I don't bend to do this, I don' stretch or twist either. The key is patience. One item at a time, brought up to a level I can reach. This is harder with wet items, but still one item at a time makes it do-able. And I enjoy a bit of independence in my day.
Despite doing laundry, today is a rest day for me. My favorite candles are lit, my house is scented with Mulled Cider, Apple, and Cobbler on the Porch! These are relaxing fragrances for me. I used to bake often. I haven't done much of that in years, and more than the baking I miss the aroma.
Off to finish my morning website viewing - good day, and if you cannot be pain free - may it be manageable.
Tuesday, November 5, 2013
I May Have Said This Before!
Soooo - I have learned that passing magnets, or being close to magnets should not cause "Buzz" (sounds like BuuZZ) to literaly buzz more! I have always been very sensitive to the type of stimulation that a neurostimulator sends out --- and I swear it buzzed more!
I have had intense leg pain for almost a week. I know it comes from my back - but I don't feel any back pain. This makes it hard to judge where it is coming from -- but I am fairly certain my leg is not the origination point. I have stayed with program #1, however I have to set it fairly high in order to get relief. While this helps my leg pain, it is fairly annoying to other areas! Perhaps it is time for a change of programs. I accidently came across an option on program #1 that allows me to make changes. I am headed towards program #3 today, hoping it has this same option.
Buzz (my name for my St Jude Neurostimulator) has allowed me many happy hours that I would not have had. I did a 2 day garage sale, enjoyed my family immensely, and went out several times. I even helped with breakfast on Sunday - set the table! It was nice to be in the kitchen again - even for a short time. The black cloud of pain, disappointment, and depression has lifted, and I feel life.
Report to follow!
I have had intense leg pain for almost a week. I know it comes from my back - but I don't feel any back pain. This makes it hard to judge where it is coming from -- but I am fairly certain my leg is not the origination point. I have stayed with program #1, however I have to set it fairly high in order to get relief. While this helps my leg pain, it is fairly annoying to other areas! Perhaps it is time for a change of programs. I accidently came across an option on program #1 that allows me to make changes. I am headed towards program #3 today, hoping it has this same option.
Buzz (my name for my St Jude Neurostimulator) has allowed me many happy hours that I would not have had. I did a 2 day garage sale, enjoyed my family immensely, and went out several times. I even helped with breakfast on Sunday - set the table! It was nice to be in the kitchen again - even for a short time. The black cloud of pain, disappointment, and depression has lifted, and I feel life.
Report to follow!
Thursday, October 31, 2013
It Has Been Awhile!
The last time I blogged was awhile ago. Various crises (?) precluded my writing. The resulting stress was grabbed by my already challenged immune system. From this I received a stomach bug and a low grade fever. Since I have already vomited in 2013 - this stomach bug was medicated into submission! Lower intestines were not included in this submission! When this "bug" was finished I was already heavily into sinus and allergy interactions, with the resulting deep throbbing headache and plugged ears. Going to the shooting range may or may not have made my ears worse!
Now for device type information. I am still happily on the 1st program setting. I ran into my St Jude rep Steve at Dr Carlson's office, while waiting for a shot in my left bursa and hip. He was happy about my results, as is my doctor. I am ecstatic! My pain is so much better I asked for a lower dose of pain medication for my prescription - which I have not filled yet! Pain comes now and then - but it has never returned to the level I suffered from prior to the Neurostimulator. Currently, I am having pain (not suffering from) down my right buttocks and leg. I believe I have a program that may address this area.
Yesterday, I had an appointment with my therapist, Dr. Barry Linden. He specifically deals with pain sufferers, and his wife has MS and is a chronic pain sufferer. We talked at length about my desire to reduce my pain medication dose, and my body's reaction. Since my pain has been reduced, I take the pain medication when I need it, rather than on a schedule which predicts when the worst pain is, based on experience. My mornings have always been less painful. That being the case, if I have taken pain medication at 10-11 PM, by the time I feel the need for another dose, it could be 12-15 hours. There comes a point where my body begins to feel the absence of pain medication, usually 15 hours. Which conveniently is around when I am starting to hurt, and consider taking my pain medication combination (1 rapid release 500 mg Tylenol, 2 liquid gel Advil, and 1 Percoset, and 1-2 mg of Tizanidine). I also lie down for the first 15-20 minutes, to take pressure off my body and bones while this combo begins to work. For now, this is what works for me. Once I begin to feel better, I am up and around again ----- and THAT is the goal.
This month, October, I made a scrapbook for my now 8 year old granddaughter, created 75 calendar magnets (check out my other blog for pictures!) and I have gone out to dinner, and several shopping adventures. THIS is improvement. I failed to mention the little problem making the calendar magnets has created! This is a PROBLEM! Most of my craft dies are stored on magnetic pages, and I have stored my extra magnets for the calendars in the same place. Apparently, this is too much "magnetism" for my Neurostimulator, and it was sent into a frenzy. This started Sunday, when I went to Joann's to purchase more magnets! Uncomfortable! Not my former Medtronics unit uncomfortable - but slightly unpleasant!
I am philosophical about my improvement and believe that sharing my story is a way to pay forward the gift of relief that I have been given. Throughout this adventure, I have learned the difference between pain --> suffering --> and misery. What an adventure!
Now for device type information. I am still happily on the 1st program setting. I ran into my St Jude rep Steve at Dr Carlson's office, while waiting for a shot in my left bursa and hip. He was happy about my results, as is my doctor. I am ecstatic! My pain is so much better I asked for a lower dose of pain medication for my prescription - which I have not filled yet! Pain comes now and then - but it has never returned to the level I suffered from prior to the Neurostimulator. Currently, I am having pain (not suffering from) down my right buttocks and leg. I believe I have a program that may address this area.
Yesterday, I had an appointment with my therapist, Dr. Barry Linden. He specifically deals with pain sufferers, and his wife has MS and is a chronic pain sufferer. We talked at length about my desire to reduce my pain medication dose, and my body's reaction. Since my pain has been reduced, I take the pain medication when I need it, rather than on a schedule which predicts when the worst pain is, based on experience. My mornings have always been less painful. That being the case, if I have taken pain medication at 10-11 PM, by the time I feel the need for another dose, it could be 12-15 hours. There comes a point where my body begins to feel the absence of pain medication, usually 15 hours. Which conveniently is around when I am starting to hurt, and consider taking my pain medication combination (1 rapid release 500 mg Tylenol, 2 liquid gel Advil, and 1 Percoset, and 1-2 mg of Tizanidine). I also lie down for the first 15-20 minutes, to take pressure off my body and bones while this combo begins to work. For now, this is what works for me. Once I begin to feel better, I am up and around again ----- and THAT is the goal.
This month, October, I made a scrapbook for my now 8 year old granddaughter, created 75 calendar magnets (check out my other blog for pictures!) and I have gone out to dinner, and several shopping adventures. THIS is improvement. I failed to mention the little problem making the calendar magnets has created! This is a PROBLEM! Most of my craft dies are stored on magnetic pages, and I have stored my extra magnets for the calendars in the same place. Apparently, this is too much "magnetism" for my Neurostimulator, and it was sent into a frenzy. This started Sunday, when I went to Joann's to purchase more magnets! Uncomfortable! Not my former Medtronics unit uncomfortable - but slightly unpleasant!
I am philosophical about my improvement and believe that sharing my story is a way to pay forward the gift of relief that I have been given. Throughout this adventure, I have learned the difference between pain --> suffering --> and misery. What an adventure!
Friday, October 11, 2013
I Am Happy and Enthusiastic!
That is what a friend and fellow card maker that I haven't seen since before I had surgery told me!!!! I saw a few friends at their garage sale -- I needed more paper, stamps, embossing powder and string! But I really went because I missed them.
This week I have been out every day -- and I have remained dressed all day - every day, until today. Today I am forcing myself to rest. This isn't easy since I have a scrapbook due on the 19th, and new stuff all over my craft room.
About my St. Jude Neurostimulator, I read the printout of my settings so I know where I could go with each setting. Program #2 is out! I could be imagining it, but every time I use that program I have stomach issues. I really am going to try the other programs ----- but #1 helps so much!
Another problem I am having, I am not resting enough. It is hard when my brain says go! Additionally, I have been reading really good books, so once I lie down to read I want to keep reading! This is a tough one!
This week I have been out every day -- and I have remained dressed all day - every day, until today. Today I am forcing myself to rest. This isn't easy since I have a scrapbook due on the 19th, and new stuff all over my craft room.
About my St. Jude Neurostimulator, I read the printout of my settings so I know where I could go with each setting. Program #2 is out! I could be imagining it, but every time I use that program I have stomach issues. I really am going to try the other programs ----- but #1 helps so much!
Another problem I am having, I am not resting enough. It is hard when my brain says go! Additionally, I have been reading really good books, so once I lie down to read I want to keep reading! This is a tough one!
Sunday, October 6, 2013
Charge!!!!!!!!!!!
I haven't charged my "device" in over 3 weeks. I learned how to monitor the battery, so I am only doing it when necessary. I probably could have gone another week - buy why take chances! I have been leaving it on 24/7, and find I don't wake up with leg pains during the night. This means I don't feel the need for pain meds during the night. I do notice, however, that the leg pains return as soon as I turn the device on. I like to experiment! Sometimes when going from moving around to lying down the vibration changes position and is uncomfortable. When this happens I shut off the device and give the nerves a chance to regroup -- at least until the pain starts. I am becoming quite the woosie!
How has having this device changed my life so far? I do more. I can be up and sitting in a chair for longer times. Which means I can craft, or visit, or read sitting up. I have gone to several stores that do not have carts and have been able to walk around, without the pain during or after. The most important thing to me, is that I wake up knowing that I unrelenting, mind numbing pain is not a given for the day. I wake up believing I can manage the pain, and have some enjoyment every day. The other thing is, I can recognize "different" pain from chronic pain. I rest better, oh I still get up a lot during the night, but it is not as bad. That was what I was going for - relief. It is true that I would like ALL pain to go away, however, I am structurally unsound so it is what it is!
I am enjoying the ride!
How has having this device changed my life so far? I do more. I can be up and sitting in a chair for longer times. Which means I can craft, or visit, or read sitting up. I have gone to several stores that do not have carts and have been able to walk around, without the pain during or after. The most important thing to me, is that I wake up knowing that I unrelenting, mind numbing pain is not a given for the day. I wake up believing I can manage the pain, and have some enjoyment every day. The other thing is, I can recognize "different" pain from chronic pain. I rest better, oh I still get up a lot during the night, but it is not as bad. That was what I was going for - relief. It is true that I would like ALL pain to go away, however, I am structurally unsound so it is what it is!
I am enjoying the ride!
Saturday, October 5, 2013
Haven't Moved on Yet!
I still haven't changed my St Jude Neurostimulator (did I ever name it?) off of program 1. It is very hard to make that kind of move when it gives me so much relief! Although, some of my progress is slow, when I can participate in several shopping/walking type errands and only complain about where the device rubs ---- life is good!
So here are some names I have entertained for the above mentioned device:
George - for those irritating times!
Let's face it I have no idea ---- and "device" seems so impersonal!
So here are some names I have entertained for the above mentioned device:
George - for those irritating times!
Let's face it I have no idea ---- and "device" seems so impersonal!
Wednesday, October 2, 2013
Yikes! I need to rest!
I have been busy, probably because I am feeling a lot better! I asked the people who are around me the most, and they said I have not been complaining about pain as much! Yahoo! BIG win! I have been going out shopping, and I love to shop - until the heat in the store gets to me - and then things take a bad turn. That is about the only thing that makes the experience bad - I hate heat!
So.......a few interesting experiences with my St Jude Neurostimulator, which from now on will be referred to by her name --------I don't know yet. Maybe I should hold a naming contest! In the last few days I have felt electrical type shocks to nerves all over my lower regions - let's say waist down. It is possible that nerves are waking up from previous RFA's. Or that the lead and device are healing and developing scar tissue, and hitting some unintended nerves. Don't know which, but I do know I need to start resting a bit more. Also confusing is that if and when I sleep on my stomach - which is rare, I have a hard time feeling the unnamed device for awhile, even when I turn it up. I don't shut the device off anymore, mostly because I need the relief. I thought I would try out other programs this week. The week isn't over yet, and I have trouble changing from what is working.
I need some more rest!
So.......a few interesting experiences with my St Jude Neurostimulator, which from now on will be referred to by her name --------I don't know yet. Maybe I should hold a naming contest! In the last few days I have felt electrical type shocks to nerves all over my lower regions - let's say waist down. It is possible that nerves are waking up from previous RFA's. Or that the lead and device are healing and developing scar tissue, and hitting some unintended nerves. Don't know which, but I do know I need to start resting a bit more. Also confusing is that if and when I sleep on my stomach - which is rare, I have a hard time feeling the unnamed device for awhile, even when I turn it up. I don't shut the device off anymore, mostly because I need the relief. I thought I would try out other programs this week. The week isn't over yet, and I have trouble changing from what is working.
I need some more rest!
Friday, September 27, 2013
And Away We Go!
I survived steroidal shots to my right side bursa and hip. Except for the LARGE bruise on the top of my right hand where the IV went. Wednesday and Thursday were tough, these shots were painful. More so because that is the side I lie on to read and watch TV. Such difficult adjustments.
I am still using program 1 on my St. Jude Neurostimulator, because it works and it helps the pain so much! But I am going to try the other programs next week, just to see what they do. Then I can productively suggest changes to the program.
Sunday is my birthday, I will be 59! Which means on Monday I can say, "I am going to be 60!" This is an interesting feeling, since my 50's have not been my favorite decade. The best part of it, grandchildren. There were 3 born during my 50's, adding to the 1 beautiful blonde boy we already had. I mention blonde, because that is so unusual for my family. So I guess I am ready to go wisely into my 60's, having a year to prepare.
One of the reasons for being optimistic is how much the Neurostimulator has helped, and the quality of Dr.'s I have.
I am still using program 1 on my St. Jude Neurostimulator, because it works and it helps the pain so much! But I am going to try the other programs next week, just to see what they do. Then I can productively suggest changes to the program.
Sunday is my birthday, I will be 59! Which means on Monday I can say, "I am going to be 60!" This is an interesting feeling, since my 50's have not been my favorite decade. The best part of it, grandchildren. There were 3 born during my 50's, adding to the 1 beautiful blonde boy we already had. I mention blonde, because that is so unusual for my family. So I guess I am ready to go wisely into my 60's, having a year to prepare.
One of the reasons for being optimistic is how much the Neurostimulator has helped, and the quality of Dr.'s I have.
Wednesday, September 25, 2013
I LOVE my Neurostimulator!
Last Friday was bad, all the way around. I got an appointment with Dr. Carlson, but it was at 1:30 pm which meant no pain pills, since I would be driving. I was a twitching mess! And just what I needed --- another bout of bursitis in the good old bursa! Bleeeech! Apparently when I started feeling better from the Neurostimulator - I recognized other pains quite well! Again - bleeeeech!
The end result - - - steroid injections today in the bursa and hips today at 3:00pm. I forgot to ask if these were going to be bi-lateral - oops.
I LOVE the St Jude Neurostimulator. Sometimes the buzzing bothers me a bit, but overall the relief I get is so much greater than the buzzing. The chair I use at my kitchen table has a back massage pad on it. I haven't used the massage feature for awhile, but since the chairs have an opening on the back, and my ice pack falls through, I just leave the pad on the chair. I keep forgetting that I haven't turned it on, because I am buzzing. HeHe!
I ADORE getting up each morning and knowing I might not suffer from mind numbing pain. I have a friend that is currently suffering from a flare of Lupus and RA, and I sympathize so much! There is a huge difference between pain, suffering, and misery!
I went to my GP yesterday, because my blood pressure was jumping so much. It was 128/72! Oops!
The end result - - - steroid injections today in the bursa and hips today at 3:00pm. I forgot to ask if these were going to be bi-lateral - oops.
I LOVE the St Jude Neurostimulator. Sometimes the buzzing bothers me a bit, but overall the relief I get is so much greater than the buzzing. The chair I use at my kitchen table has a back massage pad on it. I haven't used the massage feature for awhile, but since the chairs have an opening on the back, and my ice pack falls through, I just leave the pad on the chair. I keep forgetting that I haven't turned it on, because I am buzzing. HeHe!
I ADORE getting up each morning and knowing I might not suffer from mind numbing pain. I have a friend that is currently suffering from a flare of Lupus and RA, and I sympathize so much! There is a huge difference between pain, suffering, and misery!
I went to my GP yesterday, because my blood pressure was jumping so much. It was 128/72! Oops!
Friday, September 20, 2013
Ut-Oh! I Think This Is Sciatica!
Ouch! Ouch! Ouch! This pain that hit me suddenly is familiar, and freaks me out - badly! I had this last November, and wound up in bed for over 2 months. I really don't want this pain. The Neurostimulator does not really address this kind of pain! Ouch!
I am a natural procrastinator. This did not serve me well last November when I had this pain. So after only 2 days, I left a voice message for Dr. Carlson's patient assistant. This is how I know the pain has me freaked out!
I am a natural procrastinator. This did not serve me well last November when I had this pain. So after only 2 days, I left a voice message for Dr. Carlson's patient assistant. This is how I know the pain has me freaked out!
Thursday, September 19, 2013
That Didn't Turn Out Well!
Well! For the 2nd time this week, I had symptoms frighteningly similar to a problem that began last November. I got a pain around my lower buttocks where it meets my upper thigh, and it ran down my leg. It wasn't just a pain, but mind-numbing, aggressive pain! I was sitting at the time, recognized the feeling and headed straight to my bed to lay down. I put Thermagesic on the area's that were bothering me, and rested for an hour. When I felt better, I got chocolate to soothe and comfort and went back to resting!
This happened earlier this week also. I believe two common factors are that I walked a short distance, and I used program 2. I don't know if the program has anything to do with it, but I changed back to 1!
Freaked out!
This happened earlier this week also. I believe two common factors are that I walked a short distance, and I used program 2. I don't know if the program has anything to do with it, but I changed back to 1!
Freaked out!
On to Program 2
This week I am trying to be more organized about my St. Jude Neurostimulator. I spent a few days using only program 1. I have a tendency to move the levels up and down often, because they feel "drill-y" to me. But I left it set at 3 hash marks and adjusted my position to change how it felt and how it helped. I have had a lot of right leg pain this week, and program 1 was effective in helping the pain. What fascinates me is that I forget about the "buzzing" until a pain hits, I then change my position to feel the buzzing stronger, and the pain goes away. I think because I tend to "schlump" when I get comfortable, it isn't that I forget about the buzzing, it is that my position is preventing feeling it. I have become comfortable with program 1, and while it would be very easy to continue, it would not make for effective experimentation. Since I want several programs available, I believe I have to know what each does.
This morning I switched to program 2. One major difference in this program is that in addition to the "volume" adjustment, I can control the intensity on each leg. However, these settings can not be permanently changed by me. Once the device is shut off, the intensity settings are lost. Not a huge problem, since I can study the settings and/or write them down, then reproduce them. On this setting I can feel buzzing in my left leg a little more than with program 1. Additionally, this program feels more "tingle-y" than "buzz-y"!
During the process of evaluating program 1, I was mildly active. I walked to the corner of my cul-de-sac and back, but not the circle part. I also did some shopping, but I have not driven. Since switching to program 2 about 30 minutes ago, I did the same walk. Feeling stronger when I walk is not a factor in evaluating the programs, I believe it is a function of healing and resting.
I have an appointment with my general doctor on Tuesday, September 24. I have gained 12 pounds since surgery. This isn't the first time this has happened, where I have not made any dietary (hahaha) changes and gained weight rapidly. When I tried a different muscle relaxer after surgery, I could immediately feel my body change. I feel like I am burning up inside. Since I live in Arizona, feeling hot is not something new. However, this is a feeling I have had before. I didn't even notice when it stopped, and I lost 35 pounds, but I did notice it beginning again. One possible cause is the Kannalog shots I had for arthritis, allergies, and Fibromyalgia. I am beginning to wonder if this feeling is a result of having steroids in my body....... Hmmmmmm
Tired already!
This morning I switched to program 2. One major difference in this program is that in addition to the "volume" adjustment, I can control the intensity on each leg. However, these settings can not be permanently changed by me. Once the device is shut off, the intensity settings are lost. Not a huge problem, since I can study the settings and/or write them down, then reproduce them. On this setting I can feel buzzing in my left leg a little more than with program 1. Additionally, this program feels more "tingle-y" than "buzz-y"!
During the process of evaluating program 1, I was mildly active. I walked to the corner of my cul-de-sac and back, but not the circle part. I also did some shopping, but I have not driven. Since switching to program 2 about 30 minutes ago, I did the same walk. Feeling stronger when I walk is not a factor in evaluating the programs, I believe it is a function of healing and resting.
I have an appointment with my general doctor on Tuesday, September 24. I have gained 12 pounds since surgery. This isn't the first time this has happened, where I have not made any dietary (hahaha) changes and gained weight rapidly. When I tried a different muscle relaxer after surgery, I could immediately feel my body change. I feel like I am burning up inside. Since I live in Arizona, feeling hot is not something new. However, this is a feeling I have had before. I didn't even notice when it stopped, and I lost 35 pounds, but I did notice it beginning again. One possible cause is the Kannalog shots I had for arthritis, allergies, and Fibromyalgia. I am beginning to wonder if this feeling is a result of having steroids in my body....... Hmmmmmm
Tired already!
Monday, September 16, 2013
Charged!!
So....My device is fully charged up, as is the charger that charges! I am having a good time experimenting with the programs, and keeping notes so I can have adjustments made more precisely. I have a very low tolerance for "buzzing". I prefer the Neurostimulator to have a more soothing pulse. So I am working on that.
Small post - happy Monday!
Small post - happy Monday!
Thursday, September 12, 2013
Where Did The Feeling Good Go?
I have been feeling pretty good, and enjoying it. But something happened and I don't know what! I had a Dr. appointment this morning and then had to go to Walgreens. I started feeling bad as I was leaving Walgreens. The location of the St Jude Neurostimulator started aching and burning. When I got home I took my pain medication cocktail - Percoset, 1 rapid release Tylenol, 2 Advil, and 2 mg of Tizanidine. It took awhile for me to start feeling better, but the device site was still bothering me. I read for awhile and then sewed for awhile, just feeling the ache. When my husband got home, he rubbed some lotion on the surgical sites for me, and mentioned I was swollen at the device site. Well that explained things! He helped me look at the site, which was noticeably swollen and red. Luckily, I had some antibiotics left from a sinus infection. I took one, and have 3 more. Hopefully that will get me over this hump. IF the site is still red and swollen in the morning, I will try to get in to my general doctor. Of course, I got freaked out! I have bonded with my Neurostimulator.
Updates to follow :)
Updates to follow :)
Tuesday, September 10, 2013
A LONG Morning of Doctor Appointments
First thing this morning I had an appointment with Dr. Carlson, my pain doctor (http://www.thepaincenter.com/ )). I adore my pain doctor, he is kind, considerate, and caring. He was as pleased as I was about the St Jude Neurostimulator ( http://www.poweroveryourpain.com/?gclid=COjU4bLdwbkCFUfZQgod-2EA2Q ). I am excited about the progress after just 1 month. The bladder disease I have, Interstitial Cystitis (IC), has been acting up and causing me to get up every hour at night. Dr. Carlson said I could still get RFA's for this, so that was good news. They hurt like all hell broke loose, but help for 4-5 months.
I had told Steve (St Jude rep) the wrong time, so he hurried on over to Dr. Carlson's office to reprogram my Neurostimulator. I was going to write down all the different programs, but thankfully Steve had a printer on his re-programmer. There are 6 different programs, including 1 that covers only my right side. Additionally, 2 of the programs I can adjust left and right! Two of the programs allow me to adjust left and right! Now that is progress. I am excited about trying out the various programs, and hopefully starting to feel stronger for longer each day.
After, the appointment with Dr. Carlson, I had my yearly checkup appointment at my Urologist (www.peedoc.com ), for the Interstitial Cystitis. I have been with Dr. Nelson for over 13 years, and he has been incredibly supportive. I have samples of a new medication for the IC, and a prescription to try of a bit higher dose, after I use up the samples. The only good part of having a disease that starts getting recognition is that it gets research dollars also. I also have been wanting to let Dr. Nelson know that his support throughout the disability process and illness has been a gift, and he told me something very insightful off the subject of medicine. We were talking about families and stress (hand in hand :) ) and he said he believes every child is born with a personality, and no matter how well they are raised, their personality will eventually come through. A helpful comment at this time.
What was I thinking making 2 appointments on 1 morning.
Tired!
I had told Steve (St Jude rep) the wrong time, so he hurried on over to Dr. Carlson's office to reprogram my Neurostimulator. I was going to write down all the different programs, but thankfully Steve had a printer on his re-programmer. There are 6 different programs, including 1 that covers only my right side. Additionally, 2 of the programs I can adjust left and right! Two of the programs allow me to adjust left and right! Now that is progress. I am excited about trying out the various programs, and hopefully starting to feel stronger for longer each day.
After, the appointment with Dr. Carlson, I had my yearly checkup appointment at my Urologist (www.peedoc.com ), for the Interstitial Cystitis. I have been with Dr. Nelson for over 13 years, and he has been incredibly supportive. I have samples of a new medication for the IC, and a prescription to try of a bit higher dose, after I use up the samples. The only good part of having a disease that starts getting recognition is that it gets research dollars also. I also have been wanting to let Dr. Nelson know that his support throughout the disability process and illness has been a gift, and he told me something very insightful off the subject of medicine. We were talking about families and stress (hand in hand :) ) and he said he believes every child is born with a personality, and no matter how well they are raised, their personality will eventually come through. A helpful comment at this time.
What was I thinking making 2 appointments on 1 morning.
Tired!
Saturday, September 7, 2013
Can You say Plie!
I have become very good at ballet moves! I plié many times a day, since I cannot bend. This would be more fun if I was younger and good knees! I figure my artificial knee only has so many bends before it wears out. Point is another thing I am getting good at, although, I usually do it barefoot! I actually take this quite seriously, because I enjoy being independent. Some things are too minor to get my grab it, so I plié. **Sigh**
Today has been a very good day. It is almost 7:30 PM so I am quite comfortable saying that. I went to Costco this morning, and Marshalls this afternoon. The carts weren't heavy either time, so that really helped. I believe part of the reason I have felt good today is that I took a pain pill and muscle relaxer at 3:30 AM. Then I slept until 9:00AM. I also had company. My DIL Stephanie and my gorgeous granddaughters came over, and my cousin. Now as the day comes to a close, my hubby, Steph and the girls are driving through Wendy's! Hooray! Chicken Asiago sandwich here I come.
I didn't have to do many adjustments to the Neurostimulator today since I was up and around. I turned it on prior to Costco, lowered it when I lay down to read, and back up again when company came. So it has been up for about for 6 hours. What I find troubling, besides the feeling under my right rib cage, is that positional changes affect the effectiveness so much. For instance, I am sitting by my computer, I bend my head down and no longer feel the device. When I sit up very straight and raise my head, I almost vibrate off my chair (I exaggerate!). Tuesday morning I will be getting additional programs. Excited!
Today has been a very good day. It is almost 7:30 PM so I am quite comfortable saying that. I went to Costco this morning, and Marshalls this afternoon. The carts weren't heavy either time, so that really helped. I believe part of the reason I have felt good today is that I took a pain pill and muscle relaxer at 3:30 AM. Then I slept until 9:00AM. I also had company. My DIL Stephanie and my gorgeous granddaughters came over, and my cousin. Now as the day comes to a close, my hubby, Steph and the girls are driving through Wendy's! Hooray! Chicken Asiago sandwich here I come.
I didn't have to do many adjustments to the Neurostimulator today since I was up and around. I turned it on prior to Costco, lowered it when I lay down to read, and back up again when company came. So it has been up for about for 6 hours. What I find troubling, besides the feeling under my right rib cage, is that positional changes affect the effectiveness so much. For instance, I am sitting by my computer, I bend my head down and no longer feel the device. When I sit up very straight and raise my head, I almost vibrate off my chair (I exaggerate!). Tuesday morning I will be getting additional programs. Excited!
Thursday, September 5, 2013
Whiney, Sissy, Brat!
Yup...That is what I am sometimes! I am fully aware that my pain levels have been reduced by a single program on my Neurostimulator, and that there will be many other programs available that will help. But I still get angry at the pain, and I still whine. This morning I am feeling my limitations. These are not new limitations, I just pushed them before. Now I won't dare, because I don't want to cause problems with the lead or the Neurostimulator. So, what is the whining about? I had the urge to color with my Copic markers. When I color I tend to hunch over what I am coloring, and I know that I cannot do that. So I whined! Logically I know I can change my methods somehow. And that the wonderful people I have as Facebook friends would give me tons of suggestions - but first I must whine!
The benefits of waking up each day knowing my pain level will not start as an 8 (scale 1-10, with 10 being give me morphine!) is a gift. The St. Jude Neurostimulator has worked that well. My mind is clearer, because it is not consumed with pain. This is something I do not believe anyone but chronic pain patients understand. And I think that is a good thing for them. Now that my mind feels better and I can think more clearly, I know when I am rested from surgery, and cleared to begin activity, I want to work on my weight and stamina. I can't wait for the days, when I feel so much better, and pain pills are not as necessary.
I have gone out each day this week, and have not hit anything in my garage - or elsewhere! Tomorrow I am not going anywhere, just resting. It is still a million degrees out, but more than that, it is just difficult to get in and out of my van. The difficulty would be there with any vehicle. It's the turning while sitting, the backing out of parking spots, and the areas the backup camera does not cover. Next week, I have to go out two days for Dr. appointments, and I am sure I will want at least another day. However, I think taking it easy is my future. I am quite sore today, and while the pain doesn't feel internal and/or spinal in nature, I am also very exhausted. So rest!
There are many things I can do at home. I am not a fan of daytime TV, so I think I am going to work on the challenge of coloring. I think the first thing I should do is get a clipboard to hold the images. I am starting to feel like quilting (English Paper Piecing) again. Also, my very awesome Stampin Up friend gave me about 100 card fronts to make into cards for Operation Write Home. I have hundreds of books on the Kindle that I have not read (many haven't wanted to :) ), and a few hard copy books.
I am also setting a goal for myself to write at least one Any Hero note per day until Halloween!
Off to heal! Such hard work!
The benefits of waking up each day knowing my pain level will not start as an 8 (scale 1-10, with 10 being give me morphine!) is a gift. The St. Jude Neurostimulator has worked that well. My mind is clearer, because it is not consumed with pain. This is something I do not believe anyone but chronic pain patients understand. And I think that is a good thing for them. Now that my mind feels better and I can think more clearly, I know when I am rested from surgery, and cleared to begin activity, I want to work on my weight and stamina. I can't wait for the days, when I feel so much better, and pain pills are not as necessary.
I have gone out each day this week, and have not hit anything in my garage - or elsewhere! Tomorrow I am not going anywhere, just resting. It is still a million degrees out, but more than that, it is just difficult to get in and out of my van. The difficulty would be there with any vehicle. It's the turning while sitting, the backing out of parking spots, and the areas the backup camera does not cover. Next week, I have to go out two days for Dr. appointments, and I am sure I will want at least another day. However, I think taking it easy is my future. I am quite sore today, and while the pain doesn't feel internal and/or spinal in nature, I am also very exhausted. So rest!
There are many things I can do at home. I am not a fan of daytime TV, so I think I am going to work on the challenge of coloring. I think the first thing I should do is get a clipboard to hold the images. I am starting to feel like quilting (English Paper Piecing) again. Also, my very awesome Stampin Up friend gave me about 100 card fronts to make into cards for Operation Write Home. I have hundreds of books on the Kindle that I have not read (many haven't wanted to :) ), and a few hard copy books.
I am also setting a goal for myself to write at least one Any Hero note per day until Halloween!
Off to heal! Such hard work!
Wednesday, September 4, 2013
Any Morning Without Pain - - -
I can't really consider this a morning without pain, because I woke up at 2:00 AM in an a lot of pain, and took a pain pill, half of a muscle relaxer, and Benadryl (pediatric!). So waking up without pain is most likely brought on by my nocturnal activities. I try very hard, and I am very careful about taking medication during the night. I do not feel that I am awake enough to make and remember decisions. Otter pops and cookies are excluded!
I know that stress and sadness affect my pain, just as happiness and joy do. My stress level is affected by several things: my husband being priority challenged sometimes, and having to conduct a head removal (I will let you guess from where!) Worrying about my grandchildren - as I worried about my children; and also worrying about pain. My sadness was very specific yesterday. My happiness more broad. I was driving and listening to a Zac Brown cd, to a song titled, "Let it Go." My favorite lines, "Save your strength for things that you can change, forgive the things you can't, You've got to let it go." Working on it! Because I know that my pain is directly linked to my stress which is directly linked to my acceptance of 2 concepts: First, that you have to let stupid people be, and they will be; and second, that I raised two very honorable men, that my oldest chose to not remain that way, is neither of my doing nor fault.
I also believe meditation would help if I could do it. It is impossible for me with my insides buzzing, and my involuntary twitches! Not to mention being more ADHD with each day older I become!
Well, it is 10:40 AM, I have returned from getting my glasses straightened out. I even drove through McDonalds. Kind of regretting that now, not the driving - the eating. But, I ate at the table! Yahoo? I usually grab a cookie and lay down to read by now. The cookie is only so I can take pain meds if I need them! Sure!
I have not yet turned on the Neurostimulator, which I am going to do. Then I am going to try to de-compress and get in a minute of meditation - my longest time yet!
It is almost 8:00 pm and I realize I should not have gone so long without pain pills today, that my surgical incisions still hurt, and that I really really am tired of pain! I have to find a new game for my body to play!
I know that stress and sadness affect my pain, just as happiness and joy do. My stress level is affected by several things: my husband being priority challenged sometimes, and having to conduct a head removal (I will let you guess from where!) Worrying about my grandchildren - as I worried about my children; and also worrying about pain. My sadness was very specific yesterday. My happiness more broad. I was driving and listening to a Zac Brown cd, to a song titled, "Let it Go." My favorite lines, "Save your strength for things that you can change, forgive the things you can't, You've got to let it go." Working on it! Because I know that my pain is directly linked to my stress which is directly linked to my acceptance of 2 concepts: First, that you have to let stupid people be, and they will be; and second, that I raised two very honorable men, that my oldest chose to not remain that way, is neither of my doing nor fault.
I also believe meditation would help if I could do it. It is impossible for me with my insides buzzing, and my involuntary twitches! Not to mention being more ADHD with each day older I become!
Well, it is 10:40 AM, I have returned from getting my glasses straightened out. I even drove through McDonalds. Kind of regretting that now, not the driving - the eating. But, I ate at the table! Yahoo? I usually grab a cookie and lay down to read by now. The cookie is only so I can take pain meds if I need them! Sure!
I have not yet turned on the Neurostimulator, which I am going to do. Then I am going to try to de-compress and get in a minute of meditation - my longest time yet!
It is almost 8:00 pm and I realize I should not have gone so long without pain pills today, that my surgical incisions still hurt, and that I really really am tired of pain! I have to find a new game for my body to play!
Tuesday, September 3, 2013
Baseline For Over Doing It
I have my baseline! Sunday I went shopping to two stores - we weren't even gone an hour - but I knew! I had over done my activity level. So back to resting. I still think if the stores had been cooler, I would not have felt quite as bad. My pain level Sunday evening was about an 11 and the device was not stopping my leg pain. I was frustrated, tired, and hours of unresolved pain had cost me. I finally took a larger dose of pain medication, and started feeling a bit better. My leg pain still was not resolving.
Monday morning, I woke up to leg pain. I turned the Neurostimulator on earlier than usual, and spent the day resting. Because I could not get quite comfortable, I turned the device up, then down, then up. The higher I turned it, to get relief, the more it hurt. Around mid-day, the discomfort got a bit less, and I was able to rest for awhile.
Today, I again woke up with leg pain. I don't sleep with the Neurostimulator on, but I am going to ask the rep about this. The device no longer feels like a balloon under my ribs, and this may be why it has not been helping as much. I have tests to take today for my yearly urologist visit, then back to resting...
Boring!
Monday morning, I woke up to leg pain. I turned the Neurostimulator on earlier than usual, and spent the day resting. Because I could not get quite comfortable, I turned the device up, then down, then up. The higher I turned it, to get relief, the more it hurt. Around mid-day, the discomfort got a bit less, and I was able to rest for awhile.
Today, I again woke up with leg pain. I don't sleep with the Neurostimulator on, but I am going to ask the rep about this. The device no longer feels like a balloon under my ribs, and this may be why it has not been helping as much. I have tests to take today for my yearly urologist visit, then back to resting...
Boring!
Saturday, August 31, 2013
If Memory Serves Me - - -
If my memory serves me correctly - (hahaha!) I was never overly fond of grocery shopping. The fact of the matter is, it was a chore. Today, it was heaven! I got to go out and smell wonderful things! Mostly in the bakery department. Sam's Club was my adventure location today.... My husband and I left a hefty amount of money there! We "needed" so much. But, even though I was so glad to go out, it was ridiculously hot in the warehouse store. I was thrilled to be out in public, until I noticed the heat! Unfortunately, when I get warm and then hot, I seem to notice pain exponentially. I have been working so so so hard on healing, and resting. I made it through my portion of the checkout process, then sat down and watched as my husband went through his. The thrill of grocery shopping is proportional to amount of time I have spent home alone while healing. If only we were done with shopping when we were done at Sam's Club. Sadly, we weren't.
I am healing well, and I now that I know there is enough toilet paper, paper towel, strawberries and hot dogs to last a long time - or 4 weeks, I can resume resting. Last night was not restful. Perhaps it was the anticipation of grocery shopping, or the fact that I have a bladder that is the size of a pin head. I am not yet familiar enough, nor do I have enough program variety on the Neurostimulator to determine if it is helping my bladder. It is not anywhere near as physically irritating as the 3 Interstim Neurostimulators that I had for my bladder. But, it also doesn't have the wonderful little side effect that the Interstim had! Additionally, I have not yet kept the Neurostimulator on during the night. Perhaps in the future.
I have noticed that sometimes when pain in a specific area is reduced, my body says "I have been meaning to demonstrate the following pain," and does. Also, I am hyper focused on pain during my healing period. The Neurostimulator continues to provide reduced leg pain, pain with standing, and lower back pain. The pain in my right rib cage, from the Neurostimulator, continues to frustrate me, cause uncomfortable pressure, and make breathing difficult. I decided to not ask for an adjustment prior to my appointment on September 10th, because as the lead and device are settling in, the feeling of it is changing.
Yesterday afternoon, I waited outside for my husband to get home from work. It is still a million degrees outside. I walked 1 1/2 houses unassisted (no walker) while waiting. I don't count walking with a shopping cart or walker. Although it usually hurts, it was never as painful as walking unassisted.
Finally, while I have been resting, I have been reading a lot. Having finished a book last Sunday evening, I started "Middlesex" on Monday. Recently, it has been easier for me to read books that require little to no mental capacity. This was not such a book, and I was not enjoying it. I decided that resting would be more effective, without the frustration of reading that book, and began a series of 5 Nora Roberts books. Much less stressful to read a predictable book that I can "rest" through!
Today I have been up and around a lot. Shopping and rubber stamping. Hoping for little to no repercussions.
I am healing well, and I now that I know there is enough toilet paper, paper towel, strawberries and hot dogs to last a long time - or 4 weeks, I can resume resting. Last night was not restful. Perhaps it was the anticipation of grocery shopping, or the fact that I have a bladder that is the size of a pin head. I am not yet familiar enough, nor do I have enough program variety on the Neurostimulator to determine if it is helping my bladder. It is not anywhere near as physically irritating as the 3 Interstim Neurostimulators that I had for my bladder. But, it also doesn't have the wonderful little side effect that the Interstim had! Additionally, I have not yet kept the Neurostimulator on during the night. Perhaps in the future.
I have noticed that sometimes when pain in a specific area is reduced, my body says "I have been meaning to demonstrate the following pain," and does. Also, I am hyper focused on pain during my healing period. The Neurostimulator continues to provide reduced leg pain, pain with standing, and lower back pain. The pain in my right rib cage, from the Neurostimulator, continues to frustrate me, cause uncomfortable pressure, and make breathing difficult. I decided to not ask for an adjustment prior to my appointment on September 10th, because as the lead and device are settling in, the feeling of it is changing.
Yesterday afternoon, I waited outside for my husband to get home from work. It is still a million degrees outside. I walked 1 1/2 houses unassisted (no walker) while waiting. I don't count walking with a shopping cart or walker. Although it usually hurts, it was never as painful as walking unassisted.
Finally, while I have been resting, I have been reading a lot. Having finished a book last Sunday evening, I started "Middlesex" on Monday. Recently, it has been easier for me to read books that require little to no mental capacity. This was not such a book, and I was not enjoying it. I decided that resting would be more effective, without the frustration of reading that book, and began a series of 5 Nora Roberts books. Much less stressful to read a predictable book that I can "rest" through!
Today I have been up and around a lot. Shopping and rubber stamping. Hoping for little to no repercussions.
Thursday, August 29, 2013
Where Did The Knot Go?
Waking up each day knowing I was going to be in pain at least 90% of the day was mind numbing. It also caused a giant knot in my stomach. I was constantly stressed, at a level that only a chronic pain sufferer would understand. And as each day went by, the knot grew! Prior to getting the Neurostimulator, I had numerous RFA's to annihilate the nerve's that hurt. I always did this under sedation, because my nerves were unpredictable - and getting them stabbed was painful. The only time it wasn't painful, and I knew there were guaranteed moments of no pain, was when I was given sedation prior to the procedure. For a few seconds of bliss there was no knot or pain.
Now I am waking up lighter each day. Much of the stress is gone. I know I will probably hurt later, but I also know I can help that pain. I do not like the higher dose pain meds, I know I have said that before. It is still true. I feel that I cannot make words or memory come together the way they should.
What I have discovered about the Neurostimulator, is that it is primarily positional. If I keep it at 5 bars, I can alleviate the leg pains caused by laying on my right side. But, I can also alleviate some of the walking, standing, and sitting pain with the same setting on the Neurostimulator. This alleviates my having to constantly change the settings. Additionally, the settings are quite sensitive. If I go up 1 bar too high I find it is difficult to breath, and I feel queasy. Yuk!
This experimentation is interesting.
Now I am waking up lighter each day. Much of the stress is gone. I know I will probably hurt later, but I also know I can help that pain. I do not like the higher dose pain meds, I know I have said that before. It is still true. I feel that I cannot make words or memory come together the way they should.
What I have discovered about the Neurostimulator, is that it is primarily positional. If I keep it at 5 bars, I can alleviate the leg pains caused by laying on my right side. But, I can also alleviate some of the walking, standing, and sitting pain with the same setting on the Neurostimulator. This alleviates my having to constantly change the settings. Additionally, the settings are quite sensitive. If I go up 1 bar too high I find it is difficult to breath, and I feel queasy. Yuk!
This experimentation is interesting.
Monday, August 26, 2013
What I Can Do -As The Journey Takes Another Step
I just walked - down my driveway and over 2 houses and back! It isn't a million degrees this morning, but the humidity sure makes it feel that way. In 2004 when I gave up walking, I used to walk 2 1/2 miles every day, and then go to the gym to walk on the treadmill for 20 minutes and the dot the circuit. This wasn't exercise as much as it kept my weight even, for all the "bad" foods I would eat later. By the end of 2004, my left knee was pretty well shot and was being pampered until I was ready for a replacement , or my knee no longer functioned. Hubby and I moved, because of a lose of my disability pay, and while setting up for a wedding reception in the "new" house I fell putting a table together. And now my back had to be pampered! No more exercise for me for now.
So today was another step forward. Over the weekend I walked a few houses and stood still for about 5 minutes. The pain had not debilitated me. I hurt, that is to be expected. But it was a totally functional hurt. Since I am still adjusting to the leads and what the program I have does, I may have turned it up too high. I say this because when the program is turned up, my right rib cage hurts and I get very queasy! Once I get that queasy feeling it is hard to let go of. Another problem I am having is, clothing on my incisions for too long. Even the softest clothing puts pressure on the incisions after a few hours.
I was going to complain about the hand held device that I use to change my settings, however, I just learned from my rep that they may go to a smart phone application. At that point I will go get a smart phone! He gave me a few hints, and hopefully when we meet up on September 10, he will be able to make adjustments that work well for me. Hoping! In the mean time, I will continue to keep track of the advancements I make.
Tomorrow I have 2 errands to run. Hoping for the strength to get through, and not drive through Chick-Fil-A on the way home. The rest of tomorrow will be for rest. Today, I am going to rest for awhile, then I have a visit to the craft room planned. Niah's blanket is tie quilted, and it is time for the borders. That will be a tough one!
So today was another step forward. Over the weekend I walked a few houses and stood still for about 5 minutes. The pain had not debilitated me. I hurt, that is to be expected. But it was a totally functional hurt. Since I am still adjusting to the leads and what the program I have does, I may have turned it up too high. I say this because when the program is turned up, my right rib cage hurts and I get very queasy! Once I get that queasy feeling it is hard to let go of. Another problem I am having is, clothing on my incisions for too long. Even the softest clothing puts pressure on the incisions after a few hours.
I was going to complain about the hand held device that I use to change my settings, however, I just learned from my rep that they may go to a smart phone application. At that point I will go get a smart phone! He gave me a few hints, and hopefully when we meet up on September 10, he will be able to make adjustments that work well for me. Hoping! In the mean time, I will continue to keep track of the advancements I make.
Tomorrow I have 2 errands to run. Hoping for the strength to get through, and not drive through Chick-Fil-A on the way home. The rest of tomorrow will be for rest. Today, I am going to rest for awhile, then I have a visit to the craft room planned. Niah's blanket is tie quilted, and it is time for the borders. That will be a tough one!
Saturday, August 24, 2013
When is Grocery Shopping Fun?
When you haven't been out of the house for 2 1/2 weeks and the "good" food is all gone!!!!!!!! Yes it was fun, no I did not push a cart with very much in it. Plus, when Carl left to pick up items, I only got items that were arm level. I think I may have purchased 1 or 2 nutritious things.
I found a magnificent cake in the freezer part of the bakery, and it was on sale! I was just ready to ask the lady working in that department to help me, when Carl came up. Then when checking out, I asked the cashier if I could get help unloading. Carl had gone off to get multicolored sprinkles. she actually asked me why I wanted help. Oh, I don't know - because you guys are getting paid and standing around doing nothing!!!!!
I am going to call my St. Jude rep Monday and see if we can change the leads around. I have noticed that today I have to turn the device up higher to get relief. I wonder if that could be because I moved more today. My leg is achy today, and my foot is a bit tingly. Not liking that!
I found a magnificent cake in the freezer part of the bakery, and it was on sale! I was just ready to ask the lady working in that department to help me, when Carl came up. Then when checking out, I asked the cashier if I could get help unloading. Carl had gone off to get multicolored sprinkles. she actually asked me why I wanted help. Oh, I don't know - because you guys are getting paid and standing around doing nothing!!!!!
I am going to call my St. Jude rep Monday and see if we can change the leads around. I have noticed that today I have to turn the device up higher to get relief. I wonder if that could be because I moved more today. My leg is achy today, and my foot is a bit tingly. Not liking that!
Friday, August 23, 2013
Waiting Was Just Too Hard!
Really! What is the big difference between Thursday night and Friday morning? Answer: not enough to keep me out of the shower! Yup! I waiting was off the table! Oh Boy! Showers are a wonderful invention! I earned this shower. Not only for the healing powers (haha) I was sending to my incisions, but because I walked last evening. I stood still for awhile, then went 1 1/2 houses, turned around and came home. My hips hurt, and brought about some negative thinking. This is an area I know Dr. Carlson can fix. It has been a year since he did the shots that helped. Fingers crossed that it was not the beginning of a problem.
Nothing much has changed with the Neurostimulator. But, what has started changing is me. I am sleeping better, not getting up and wandering in the middle of the night or getting up for Otter Pops and "other" non-nutritious snacks. I also don't feel the dread of knowing I was about to face another day of pain. I feel lightened by this. Resting is still a major part of my day, but I make sure to get into the craft room for some time each day.
Over the weekend, since my hubby is home, I am going to walk a little bit each day. It is still a million degrees outside, so small amounts at a time. Perhaps another movie! I was also hoping to get out of the house for a little while. Time will tell.
Nothing much has changed with the Neurostimulator. But, what has started changing is me. I am sleeping better, not getting up and wandering in the middle of the night or getting up for Otter Pops and "other" non-nutritious snacks. I also don't feel the dread of knowing I was about to face another day of pain. I feel lightened by this. Resting is still a major part of my day, but I make sure to get into the craft room for some time each day.
Over the weekend, since my hubby is home, I am going to walk a little bit each day. It is still a million degrees outside, so small amounts at a time. Perhaps another movie! I was also hoping to get out of the house for a little while. Time will tell.
Thursday, August 22, 2013
"Guilt Trip" 2nd Accomplishment
I watched this movie last evening! Why is that so important? I sat up - YUP I sat up, in my living room, on the couch, and watched it! I can't remember when I last did that. So, I consider it quite an accomplishment! Okay - I ordered the movie by accident. Apparently, I have no controls on my DVR box to stop that. Note to self - add them! Would I have intentionally chosen to sit and watch a movie? No. Not sitting, not in the early evening and not on the couch! That is what makes this accomplishment amazing to me! Oh, and it was a pretty good movie.
My pain medication schedule changed yesterday also. I didn't need any pain medication until 12:30 PM. BUT, then the line between not needing any and being nauseous from pain turned into a fine line. I did not feel the need to take any more pain medication until after 7:00 pm. This actually confused my body. I could tell it did because I tried to go to sleep at 10:00 PM and had no luck. I tried unsuccessfully until 11:45 then took another pain pill. I think I had a restful night. That doesn't mean I didn't get up every hour - or so - to go to the bathroom. I just feel more rested today.
Wearing clothes: I am opposed to bras, unless there is good cause. That is another story! But I have noticed that wearing capri's, even soft, light weight capri's, tends to rub, put pressure on, or otherwise hurt my incisions. I have been wearing "house" dresses, but I don't like doing this. The reason may go back to my OCD roots - again another story! I just feel "unwell" when wearing a house dress all day. Crazy, I know!
It is still early in the day, most of the things I have done have been sitting up. While hard to judge changes, and the Neurostimulator is set for laying on my right side in bad, I can feel the changes. I don't have the weight of debilitating pain looming over me. I do not have disturbing pain in my right calf, or tingling, aching toes on that leg. My lower right back, the spot that is my arch nemesis, has had a noticeable pain reduction. Hips: another point of contention for my pain management. The right, which seems to have more arthritis than the left, has only mild and intermittent pain. My left hip is quite jealous.
What does the rest of my day hold? My kids and granddaughters are coming over for pizza, homework, and fun! I am looking forward to that, so I am going to get a little pre-emptive rest. I do not seem to need as much rest, as surgical pain resolves. On Saturday, hopefully, I am going to lower the dosage of my pain medication. I HATE PAIN MEDICATION - mostly how it makes me feel!
TMI: Today is 2 weeks that I have not gotten to shower - - - - I know - eeeeeewwww. Tomorrow morning - - - that hot, soapy water is mine!!!!!!
My pain medication schedule changed yesterday also. I didn't need any pain medication until 12:30 PM. BUT, then the line between not needing any and being nauseous from pain turned into a fine line. I did not feel the need to take any more pain medication until after 7:00 pm. This actually confused my body. I could tell it did because I tried to go to sleep at 10:00 PM and had no luck. I tried unsuccessfully until 11:45 then took another pain pill. I think I had a restful night. That doesn't mean I didn't get up every hour - or so - to go to the bathroom. I just feel more rested today.
Wearing clothes: I am opposed to bras, unless there is good cause. That is another story! But I have noticed that wearing capri's, even soft, light weight capri's, tends to rub, put pressure on, or otherwise hurt my incisions. I have been wearing "house" dresses, but I don't like doing this. The reason may go back to my OCD roots - again another story! I just feel "unwell" when wearing a house dress all day. Crazy, I know!
It is still early in the day, most of the things I have done have been sitting up. While hard to judge changes, and the Neurostimulator is set for laying on my right side in bad, I can feel the changes. I don't have the weight of debilitating pain looming over me. I do not have disturbing pain in my right calf, or tingling, aching toes on that leg. My lower right back, the spot that is my arch nemesis, has had a noticeable pain reduction. Hips: another point of contention for my pain management. The right, which seems to have more arthritis than the left, has only mild and intermittent pain. My left hip is quite jealous.
What does the rest of my day hold? My kids and granddaughters are coming over for pizza, homework, and fun! I am looking forward to that, so I am going to get a little pre-emptive rest. I do not seem to need as much rest, as surgical pain resolves. On Saturday, hopefully, I am going to lower the dosage of my pain medication. I HATE PAIN MEDICATION - mostly how it makes me feel!
TMI: Today is 2 weeks that I have not gotten to shower - - - - I know - eeeeeewwww. Tomorrow morning - - - that hot, soapy water is mine!!!!!!
Wednesday, August 21, 2013
Almost Two Weeks
I think my cheeks are rosy! Usually they are red and splotchy, a sign of pain for me. But today is better, on many levels. It's 10:30 AM and I have not turned on my Neurostimulator. I had it on until 9:00 PM yesterday, and I was pleased with the results. I did my share of laying around reading, but I also spent some time in my craft room making cards. Quite enjoyable to be back in there. Also very enjoyable to sit at my craft desk without my right leg and hip aching and my right foot beginning to tingle and get numb.
So, today I have not been laying around or crafting yet. Instead, I had an appointment at my dental office to have my 1st denture adjustment. Nice difference and adjustment makes. Except when I try to eat with them. This is a time will see drama. and I suspect more adjustments.
The same goes for the Neurostimulator. I am finding it quite helpful with pain, not surgical pain, but general - this is why I got a Neurostimulator pain. I have not had the opportunity to walk much. I won't walk without my husband, or another person beside me. Also, it has been 112 degrees outside and a bit humid. I am not particularly interested in going out in that weather, unless absolutely necessary. Regardless, that is the next phase of what I want to check out with the Neurostimulator. I want to know if I can walk, even short distances, without pain. Maybe Sat or Sunday I will be able to check this out at a local craft store!
Today my plan is to work on Niah's quilt and read. I adjust the Neurostimulator based on position. My hope is that when the device gets adjusted, I can chart which part of each lead is activated, and judge where the relief is. I believe I need to take an engineering standpoint with this approach. Being that there are 8 points of activation on each side of the lead, the potential for combinations is 64 (I think!)
On to my day!
New partial dentures adjusted - check
getting in and out of van sucked! The lumbar supports are annoying!
Exterminator sprayed house - check
Felt near complete exhaustion just after noon and had to lie down
I do not understand why on some days pain medication does nothing for or to me, and other's - like today - it knocks me on my butt.
Neurostimulator Discovery #1: When I turn the device up too high, it makes me queasy and hurts the ribs on my right side. Things that make you go hmmmmm!
So, today I have not been laying around or crafting yet. Instead, I had an appointment at my dental office to have my 1st denture adjustment. Nice difference and adjustment makes. Except when I try to eat with them. This is a time will see drama. and I suspect more adjustments.
The same goes for the Neurostimulator. I am finding it quite helpful with pain, not surgical pain, but general - this is why I got a Neurostimulator pain. I have not had the opportunity to walk much. I won't walk without my husband, or another person beside me. Also, it has been 112 degrees outside and a bit humid. I am not particularly interested in going out in that weather, unless absolutely necessary. Regardless, that is the next phase of what I want to check out with the Neurostimulator. I want to know if I can walk, even short distances, without pain. Maybe Sat or Sunday I will be able to check this out at a local craft store!
Today my plan is to work on Niah's quilt and read. I adjust the Neurostimulator based on position. My hope is that when the device gets adjusted, I can chart which part of each lead is activated, and judge where the relief is. I believe I need to take an engineering standpoint with this approach. Being that there are 8 points of activation on each side of the lead, the potential for combinations is 64 (I think!)
On to my day!
New partial dentures adjusted - check
getting in and out of van sucked! The lumbar supports are annoying!
Exterminator sprayed house - check
Felt near complete exhaustion just after noon and had to lie down
I do not understand why on some days pain medication does nothing for or to me, and other's - like today - it knocks me on my butt.
Neurostimulator Discovery #1: When I turn the device up too high, it makes me queasy and hurts the ribs on my right side. Things that make you go hmmmmm!
Monday, August 19, 2013
1st Sign of Pain Relief
In my mind I am jumping for joy! I have had the 1st sign of pain relief. I spend more time than I "should" lying on my right side in bed - reading and/or watching TV. This has been a source of much pain. My hip would go numb and tingle, the outer calf on my right leg would ache terrible, and my toes and upper foot would tingle and go numb. Since I am still in REST mod, I spend time on my side yesterday with the device turned on, and it helped! And it was awesome! I had to make adjustments twice - but being able to rest without pain is nice, very nice.
This is the 1st step towards freedom from pain!
Well maybe the 2nd. Yesterday morning I did walk 1 house and back. It exhausted me. But I did it - plus I stood for a few minutes while waiting for my husband. And I was able to do this! This is all a good sign.
Now if the surgical stuff would quit hurting, I could start really testing!
It is later in the day from the beginning of this post. I guess I am more comfortable, since I spent some time in my craft room today and made a few cards.
I am going through a complete mindset change. For as long as I have had this unrelenting back pain, I have had less pain in the mornings, and did not require pain medication until later morning, early afternoon. Because I am stubborn, I would let pain go as long as possible before taking pain medication. Often to the point of nausea. I mentally set my limit at 3 pain pills. My dosage has changed, which made me unhappy. I also may take up to 4 Extra Strength Tylenol (Rapid Release) up to 4 Advil/Motrin. This morning I had convinced myself that pain medication was no longer necessary. Yes, that was stupid! Around noon that became very clear to me. Apparently, I had also begun to watch the clock so didn't let the pain meds wear off all the way, before I took another. I am not certain when this started happening. but I realized that since I was starting to feel better I didn't need to do this. Now that I have the Neurostimulator I can wait until I feel the need for pain medication before I take it. I will, as has been my behavior in the past, probably wait too long.
This is the 1st step towards freedom from pain!
Well maybe the 2nd. Yesterday morning I did walk 1 house and back. It exhausted me. But I did it - plus I stood for a few minutes while waiting for my husband. And I was able to do this! This is all a good sign.
Now if the surgical stuff would quit hurting, I could start really testing!
It is later in the day from the beginning of this post. I guess I am more comfortable, since I spent some time in my craft room today and made a few cards.
I am going through a complete mindset change. For as long as I have had this unrelenting back pain, I have had less pain in the mornings, and did not require pain medication until later morning, early afternoon. Because I am stubborn, I would let pain go as long as possible before taking pain medication. Often to the point of nausea. I mentally set my limit at 3 pain pills. My dosage has changed, which made me unhappy. I also may take up to 4 Extra Strength Tylenol (Rapid Release) up to 4 Advil/Motrin. This morning I had convinced myself that pain medication was no longer necessary. Yes, that was stupid! Around noon that became very clear to me. Apparently, I had also begun to watch the clock so didn't let the pain meds wear off all the way, before I took another. I am not certain when this started happening. but I realized that since I was starting to feel better I didn't need to do this. Now that I have the Neurostimulator I can wait until I feel the need for pain medication before I take it. I will, as has been my behavior in the past, probably wait too long.
Sunday, August 18, 2013
IF I Were A Patient Woman...........
How to finish that sentence??? I am absolutely positive that I would be more patient if I could shower. But it is good to know per my husband and doctor, that I don't smell! I really want a shower!
My surgical pain is less today, and I will probably poke my head outside today and try to walk to the next house. I have discovered that if I don't have pain, I don't need the Neurostimulator on. Once I get used to it and have several programs to use, then I can experiment more fully. That is really what this is about - experimenting. My pain tends to change places, although it is consistently annoying me in the same places most of the time. I know that this device is meant to help leg and back pain, I am hoping hoping hoping that it feel sympathetic towards my bladder nerves, and decides to help the Interstitial Cystitis (http://www.ichelp.org/).
My life has changed so drastically with the onset of different pain conditions. I fought it for many years, but ultimately the pain became so bad it was impossible for me to fight it any longer. For many years, I was very down on myself. I blamed myself for having to leave work, to change homes, and cars, and daily activities. I would bet all chronic pain patients go through similar things. During this period though, I had wonderful blessings, I got grandchildren! It is true that this helped me feel better, and forget the pain for awhile. What a gift!
On Friday, August 16, at my doctor's visit he suggested I find a television series to watch and catch up on that. Maybe. I am thinking about it. I am also going to see about a series of books to read. NOT Nora Roberts. I am just not up for that. Off to search Amazon.
Don't forget - I am still working on tying my granddaughters quilt. The one I made for her when she was 5. I want to be able to give it to her at her 8th birthday in October!
I made a card last night. It has been awhile, and I have missed my crafting space. I challenged myself to make a card for items in the areas that I could reach without violating my limits. I am still working on loving it. Today may bring another challenge. With the new muscle relaxers that I got, I do not get as fog brained!
Sunday paper awaits me, and I am getting tired already. How that does suck!!!!!!
******sigh******
My surgical pain is less today, and I will probably poke my head outside today and try to walk to the next house. I have discovered that if I don't have pain, I don't need the Neurostimulator on. Once I get used to it and have several programs to use, then I can experiment more fully. That is really what this is about - experimenting. My pain tends to change places, although it is consistently annoying me in the same places most of the time. I know that this device is meant to help leg and back pain, I am hoping hoping hoping that it feel sympathetic towards my bladder nerves, and decides to help the Interstitial Cystitis (http://www.ichelp.org/).
My life has changed so drastically with the onset of different pain conditions. I fought it for many years, but ultimately the pain became so bad it was impossible for me to fight it any longer. For many years, I was very down on myself. I blamed myself for having to leave work, to change homes, and cars, and daily activities. I would bet all chronic pain patients go through similar things. During this period though, I had wonderful blessings, I got grandchildren! It is true that this helped me feel better, and forget the pain for awhile. What a gift!
On Friday, August 16, at my doctor's visit he suggested I find a television series to watch and catch up on that. Maybe. I am thinking about it. I am also going to see about a series of books to read. NOT Nora Roberts. I am just not up for that. Off to search Amazon.
Don't forget - I am still working on tying my granddaughters quilt. The one I made for her when she was 5. I want to be able to give it to her at her 8th birthday in October!
I made a card last night. It has been awhile, and I have missed my crafting space. I challenged myself to make a card for items in the areas that I could reach without violating my limits. I am still working on loving it. Today may bring another challenge. With the new muscle relaxers that I got, I do not get as fog brained!
Sunday paper awaits me, and I am getting tired already. How that does suck!!!!!!
******sigh******
Saturday, August 17, 2013
BIG Day and beyond!
I am the type of person that will follow a diet for 1 day (OK not ALL day!) and expect to wake up skinny the next day. And so it was yesterday. My pain management device was activated - and I expected to wake up today free of pain - and of course skinny! I had also expected to be able to shower when I returned from the doctor - -- that didn't happen either :(. One more week of sponge baths to let the incisions heal. OH - and I have to rest It is SOOOO lucky I adore my doctor!
The rep from St. Jude came into the room my husband and I were waiting in. The reps for Arizona are Steve Sharkey and Jason Winter. Steve was with me during surgery - poor guy! Jason was at Dr. Carlson's office to activate the device, explain things, and answer questions. He was with me during the trial. I am quite sensitive to nerve stimulation, so some tweaks were necessary. Together we got the device working to cover my "problem" areas of pain. I tend to collapse and slump when I am relaxed, but to get the full nerve stimulation I have to sit straight up and keep my head up. I suspect this will take some time to get used to. That and I still have surgical pain. I will meet up with Steve or Jason at my next doctor's appointment to assess the area that the device is covering and add other programs to cover different areas. As scar tissue forms, I heal and pain changes areas, different nerve groups will have to be stimulated. So, now I get to rest, heal and work with the pattern that is set on the Neurostimulator to see if my pain is relieved. What I have found so far is that if I leave the stimulation level the same for sitting and moving around, as I do for laying down, my toes curl a bit. This is not very comfortable, and I have to lower the stimulation setting. I am even working on paying attention to the little bar readout on the Neurostimulator's remote. Later this week I may work on remembering!
The rep from St. Jude came into the room my husband and I were waiting in. The reps for Arizona are Steve Sharkey and Jason Winter. Steve was with me during surgery - poor guy! Jason was at Dr. Carlson's office to activate the device, explain things, and answer questions. He was with me during the trial. I am quite sensitive to nerve stimulation, so some tweaks were necessary. Together we got the device working to cover my "problem" areas of pain. I tend to collapse and slump when I am relaxed, but to get the full nerve stimulation I have to sit straight up and keep my head up. I suspect this will take some time to get used to. That and I still have surgical pain. I will meet up with Steve or Jason at my next doctor's appointment to assess the area that the device is covering and add other programs to cover different areas. As scar tissue forms, I heal and pain changes areas, different nerve groups will have to be stimulated. So, now I get to rest, heal and work with the pattern that is set on the Neurostimulator to see if my pain is relieved. What I have found so far is that if I leave the stimulation level the same for sitting and moving around, as I do for laying down, my toes curl a bit. This is not very comfortable, and I have to lower the stimulation setting. I am even working on paying attention to the little bar readout on the Neurostimulator's remote. Later this week I may work on remembering!
Thursday, August 15, 2013
Feeling Edgy
I have about had it with pain today. I lost a cap this morning and had to rush out to the dentist. Since I haven't dressed myself or driven since surgery this was not a good experience. Sitting in a dentist chair was less exciting than driving - although that completely sucked. The roads in my community are under construction! Back to the dentist - - - I must have said "DO NOT LAY ME BACK" at least 10 times ------but she does. I figured she would, so I was prepared. It hurt anyway. Then it was back in the van, and back home.
I did not do much today. I was hurting from my dental adventure and decided to take a full dose of muscle relaxers to make the pain vanish. This wound up just annoying me into a stupor. A chocolate, eat all the cookies in the house stupor. The kind that made me realize that my house makes a ton of noise, and the twitching is annoying the heck out of me!
I got back in a housedress after my dentist visit. Wearing a bra has become completely optional!
And then something wonderful happened! Mike, Steph, Niah, and Naomi came over, Carl went off to Posse, and we ordered Chinese food from our favorite restaurant. The restaurant closes all summer, so the 1st order of the season is special - and makes Niah extra happy! I am so very blessed to have my beautiful family close by, some awesome cousins, and my hubby! Can't wait until my grandsons and Heather are closer and I can see them and spoil them more frequently.
It is time to put down the wooooo me's for awhile and remember that the light at the end of the surgical pain tunnel ---- is relief from constant pain! Yee haa!
I did not do much today. I was hurting from my dental adventure and decided to take a full dose of muscle relaxers to make the pain vanish. This wound up just annoying me into a stupor. A chocolate, eat all the cookies in the house stupor. The kind that made me realize that my house makes a ton of noise, and the twitching is annoying the heck out of me!
I got back in a housedress after my dentist visit. Wearing a bra has become completely optional!
And then something wonderful happened! Mike, Steph, Niah, and Naomi came over, Carl went off to Posse, and we ordered Chinese food from our favorite restaurant. The restaurant closes all summer, so the 1st order of the season is special - and makes Niah extra happy! I am so very blessed to have my beautiful family close by, some awesome cousins, and my hubby! Can't wait until my grandsons and Heather are closer and I can see them and spoil them more frequently.
It is time to put down the wooooo me's for awhile and remember that the light at the end of the surgical pain tunnel ---- is relief from constant pain! Yee haa!
Tuesday, August 13, 2013
Are We Having Fun Yet?
Actually NO! I can't wait until Friday! I am not having fun waiting for the Neurostimulator to be activated. I am not having fun not being able to shower (TMI)! I am not having fun with the glue/stitches/staples in my lower back and left hip. But mostly, I am not having fun worrying about whether this process will work, and waiting to find out.
I like resting as much as the next person, but on the 6th day enough is enough. My body is not requiring as much rest, so now it is annoying. I am bored. I began quilting a blanket that has been waiting for over 2 years. Which raises the question - am I suddenly motivated or actually that bored. I fear the later! I am not having fun!
What would I consider fun at this point? Grocery shopping would be better than waiting around for Friday. Hurting less would be fun, even a little less. I am unable to find a comfortable position and getting up and down is even more uncomfortable than lying still. Which, by the way, I am not able to do. I am having a problem with twitching. This problem has existed, on and off, for several years, and I am not talking about little twitches. I am talking about lift my body off the bed kind of twitches, and they occur in succession. This evening my husband told me he was watching me twitch while I was sleeping this morning. If and when I can find a comfortable position, one in which my right leg is not getting numb, this twitching distracts me significantly. It might be more accurate to call the feeling a jolt rather than a twitch. I have noticed that I occasionally feel these while sitting, which is new. Just what I need, progressive discomfort!
It is my most sincere hope that when the Neurostimulator is turned on and performs miraculously, relieving all of my pain, making me 4 inches taller and 100 pounds lighter, I will no longer feel tingling, numbness and/or jolt like twitching. The temperature outside will be tolerable, my van will smell like new leather not old dirty feet. My debit card will have an endless supply of money, and I will own every Whipper Snapper and Hero Arts rubber stamp ever made, AND every color Copic marker plus refills. Then I will be having fun! Will I have to drastically alter my thinking on how the Neurostimulator will work, and what will constitute fun? Sure. I am, after all, willing to compromise.
Are we having fun yet? No, not yet. But, I am willing to consider less pain and a lower dose of pain killers fun. I am also willing to be thrilled at taking a shower! These are my revised standards of fun.
I like resting as much as the next person, but on the 6th day enough is enough. My body is not requiring as much rest, so now it is annoying. I am bored. I began quilting a blanket that has been waiting for over 2 years. Which raises the question - am I suddenly motivated or actually that bored. I fear the later! I am not having fun!
What would I consider fun at this point? Grocery shopping would be better than waiting around for Friday. Hurting less would be fun, even a little less. I am unable to find a comfortable position and getting up and down is even more uncomfortable than lying still. Which, by the way, I am not able to do. I am having a problem with twitching. This problem has existed, on and off, for several years, and I am not talking about little twitches. I am talking about lift my body off the bed kind of twitches, and they occur in succession. This evening my husband told me he was watching me twitch while I was sleeping this morning. If and when I can find a comfortable position, one in which my right leg is not getting numb, this twitching distracts me significantly. It might be more accurate to call the feeling a jolt rather than a twitch. I have noticed that I occasionally feel these while sitting, which is new. Just what I need, progressive discomfort!
It is my most sincere hope that when the Neurostimulator is turned on and performs miraculously, relieving all of my pain, making me 4 inches taller and 100 pounds lighter, I will no longer feel tingling, numbness and/or jolt like twitching. The temperature outside will be tolerable, my van will smell like new leather not old dirty feet. My debit card will have an endless supply of money, and I will own every Whipper Snapper and Hero Arts rubber stamp ever made, AND every color Copic marker plus refills. Then I will be having fun! Will I have to drastically alter my thinking on how the Neurostimulator will work, and what will constitute fun? Sure. I am, after all, willing to compromise.
Are we having fun yet? No, not yet. But, I am willing to consider less pain and a lower dose of pain killers fun. I am also willing to be thrilled at taking a shower! These are my revised standards of fun.
Monday, August 12, 2013
Don't Fold, Stamp, or Mutilate!
NO BLT!! That's what Dr. Carlson said to me in recovery, after surgery. It means - - - NO bending, lifting or twisting! That was surprisingly easy after surgery - - moving was not. But now I am past the immediate surgical pain and into that constant feeling of knowing the incisions are present. This in and of itself prevents BLT!
I am constantly concerned that when I move, I may have twisted. Or when I go to sit down, I may have bent over too far. I look up at the ceiling in an effort to keep my back straight. The act of sitting results in some bending - - that I cannot help.
Once the device is turned on, on August 16, I believe I will be able to feel the change in nerve stimulation when I move, and that will give me some piece of mind that the leads are still in place and working. That is my biggest fear! Well that and that the device won't help.
I am looking forward to August 16 - a lot! I can't wait to have the device turned on - and set to areas on the leads that will help my pain. Less pain sounds pretty awesome to me!!!!!!!! This is when the BLT becomes hard. When I feel better, feeling better often results in stupidity! I am planning on taking it easy for 6 months, and letting scar tissue form around the leads and the device. My brain is working on how to do this. I can work on crafts! Make more cards for Operation Write Home, and make tissue box covers, tea light holders and boxes............. I just have to plan ahead, and have Carl reach all the items I might need for the day. I don't know if I can use my crank Sizzix machine. I can just imagine getting to the point of needing a shape, or embossing on a project, and clipping the items together for Carl or Stephanie to do when they are here. Hmmmmmmmm - missing my electric Sizzix right now!
My 1st project is organizing the Gold Canyon Candle stuff for Carl. So he can take items to work with him. My 2nd or concurrent project is to make 2014 calendar holders. I did this in 2012 and it was a giant hint. This time they have to pay their way - cost of magnets, calendars, paper, embellishments. I have the fun of making them, but I have to replenish supplies used - so I can make the next batch....
Finally, I am going to read while I am taking it easy. I try to read a self-help/spiritual book at the same time I am reading mindless novels. It keeps my brain somewhat alive! Walking kept my spirit alive and kept me focused. I hope I can get out in the hot/yukky air.
A little secret (haha) while I am taking it easy, I am learning to wear my partial dentures. I am still on the uppers, and today I may try eating (really smashing and sucking).
For now - it is time to take it easy. I hate needing more pain medication. I snooze throughout the day then, and feel there is something I could/should be doing. Going to rest now.
I am constantly concerned that when I move, I may have twisted. Or when I go to sit down, I may have bent over too far. I look up at the ceiling in an effort to keep my back straight. The act of sitting results in some bending - - that I cannot help.
Once the device is turned on, on August 16, I believe I will be able to feel the change in nerve stimulation when I move, and that will give me some piece of mind that the leads are still in place and working. That is my biggest fear! Well that and that the device won't help.
I am looking forward to August 16 - a lot! I can't wait to have the device turned on - and set to areas on the leads that will help my pain. Less pain sounds pretty awesome to me!!!!!!!! This is when the BLT becomes hard. When I feel better, feeling better often results in stupidity! I am planning on taking it easy for 6 months, and letting scar tissue form around the leads and the device. My brain is working on how to do this. I can work on crafts! Make more cards for Operation Write Home, and make tissue box covers, tea light holders and boxes............. I just have to plan ahead, and have Carl reach all the items I might need for the day. I don't know if I can use my crank Sizzix machine. I can just imagine getting to the point of needing a shape, or embossing on a project, and clipping the items together for Carl or Stephanie to do when they are here. Hmmmmmmmm - missing my electric Sizzix right now!
My 1st project is organizing the Gold Canyon Candle stuff for Carl. So he can take items to work with him. My 2nd or concurrent project is to make 2014 calendar holders. I did this in 2012 and it was a giant hint. This time they have to pay their way - cost of magnets, calendars, paper, embellishments. I have the fun of making them, but I have to replenish supplies used - so I can make the next batch....
Finally, I am going to read while I am taking it easy. I try to read a self-help/spiritual book at the same time I am reading mindless novels. It keeps my brain somewhat alive! Walking kept my spirit alive and kept me focused. I hope I can get out in the hot/yukky air.
A little secret (haha) while I am taking it easy, I am learning to wear my partial dentures. I am still on the uppers, and today I may try eating (really smashing and sucking).
For now - it is time to take it easy. I hate needing more pain medication. I snooze throughout the day then, and feel there is something I could/should be doing. Going to rest now.
Sunday, August 11, 2013
Surgical Discomfort
I hurt to much from the surgery to label it as "discomfort". It is also tough to move, while protecting the surgical spots without bending or twisting. I am not having a problem with not lifting. The pain medicine that helps make me fall asleep, and leaves me a bit furry brained. I took less in the afternoon, so I could stay awake - this was not effective. I remained on the edge of sleepiness with a bit too much comfort to relax. Cookies, and tortilla chips are really yummy at 1 AM!
I forgot that a constant fear the 3 other times I had neurostimulators (for bladder problems) I constantly worried about the leads moving. In this life, I do not need anything else to obsess about thank you!
One interesting tidbit I have noticed. The device was turned on during surgery to test for lead activity. My brain must have taken this as a sign to not turn on the pain in certain areas. My leg pain has been reduced, as it was during the trial. I appreciate this, and it gives me hope for when the device gets activated on August 16.
I forgot that a constant fear the 3 other times I had neurostimulators (for bladder problems) I constantly worried about the leads moving. In this life, I do not need anything else to obsess about thank you!
One interesting tidbit I have noticed. The device was turned on during surgery to test for lead activity. My brain must have taken this as a sign to not turn on the pain in certain areas. My leg pain has been reduced, as it was during the trial. I appreciate this, and it gives me hope for when the device gets activated on August 16.
My Journey Begins August 8, 2013
I have a lot of pain, and I have it for several reasons or causes: Interstitial Cystitis, Fibromyalgia, and degenerative bone disease - predominately in my back. I have screws in my back, and extra (pseudo) joint. Things in my back - like nerves - are not where they should be. Put this together and you get pain - chronic, often mind numbing pain.
Why did my journey out of pain begin on August 8, 2013? Because on that date I had a St Jude Neurostimulator placed in my back, with 2 leads attached to my spine. Prior to this, there was a 5 day trial that went remarkably well. I was so excited to have the permanent device put in place! The surgery was a killer - and recovery doesn't have me jumping for joy - yet. But I have high hopes for freedom over pain. At least the spinal/back pain.
Some of the things I stopped doing because of the pain:
* Working
* Walking
* Making plans
* Cooking/Baking
* Eating properly - and worrying about my weight
Things I want to do when I feel better:
* Bake
* Walk
* Travel
* Be less cranky!
* Go out more - dinner - shopping
So, I will keep up with the blog, and diagram my progress and freedom over pain.
Why did my journey out of pain begin on August 8, 2013? Because on that date I had a St Jude Neurostimulator placed in my back, with 2 leads attached to my spine. Prior to this, there was a 5 day trial that went remarkably well. I was so excited to have the permanent device put in place! The surgery was a killer - and recovery doesn't have me jumping for joy - yet. But I have high hopes for freedom over pain. At least the spinal/back pain.
Some of the things I stopped doing because of the pain:
* Working
* Walking
* Making plans
* Cooking/Baking
* Eating properly - and worrying about my weight
Things I want to do when I feel better:
* Bake
* Walk
* Travel
* Be less cranky!
* Go out more - dinner - shopping
So, I will keep up with the blog, and diagram my progress and freedom over pain.
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