[tchr012]

Sorry, I haven't been around here again but I have been sick for weeks and dealing with constant pain I saw my pain doctor this week and they are going to see if my stimulator program can be changed enough in order to cover more areas of my body. It already works in my legs and back (somewhat) but we are trying to get it to cover pelvic area too since I have chronic pain conditions that affect that area. He said this only works in 20 percent of people with stims so I am hoping it will work for me. My usual stim guy that I have had for years now has people under him and I will be reprogrammed with a new person on Tuesday in the hospital hallway! So, that is kind of odd but with the lack of sleep and not being able to do anything nor want to do anything I am desperate for pain management/relief. They also refused to put me on any actual pain meds and nerve pain meds because of possible drug interactions and my other conditions, this made me mad because a year ago they were letting me have pain meds. I am dealing with my health problems and also my mother's health problems so I am under a lot of stress and just trying to handle everything at once. I probably won't be around too much for awhile just because there is a lot going on but I am always thinking of all of you and you're in my thoughts and prayers! I will also let you know if we do get my stim programs to change and cover more pain areas because it might be helpful for other people! Take care and I will be back again sometime

[Rrae]

Thank you for the update
It's always great to hear from you! We certainly understand that you have alot on your plate - we're just glad you come here once in awhile to let us know how you are doing. This way we know what to pray for and we can all unite together as a prayer chain.

I'm so sorry to hear that the pain is continuing to bring you these struggles ....and the complications with pain meds. I know you are battling several different issues and I'm sorry for the frustration this brings you, especially the lack of pain relief. I sure wish they could work around this better.
Maybe this new rep will have some fresh ideas at your programming session.
It's great that you are getting good relief in your legs and some in your back. How wonderful it would be to get the pelvic area covered as well.

I hope everything else is going ok? Gearing up for the holidays?
No matter how early I start for Christmas, I still end up running around like a crazed lunatic at the very last minute

Please keep us posted - you KNOW you are always in our prayers!

Rae

[Mark56]

I am so sad about the pain!!!!! You recently received paddle or paddles as I recall. Mine is paddles and at T8/T9 by laminectomy. The programs include one that I set which covers lumbar, both legs, and pelvic floor, coccyx area. It is the program I default to for pain spikes and zoom it up because it induces hypo parasthesia, I guess is the effect, since it absolutely paralyzes me kinda like I was before the emergency back surgery I wound up having on 6 January 2006. This is doable, and doable for you, given the proper circumstances, proper hands on the situation and all. I mean, gee, if this is what can be done for me, then why not you?

I care so much, and pray for you dear Lady,
I do,
Mark56

[tchr012]

Rae and Mark, Thank you so much for understanding everything I try to be multiple places at once and when you feel bad something has to take a break. My husband has been trying to plan something for my birthday coming up next week but I don't know if I am going to feel like doing anything. December is a very busy month for us because we have 3 family members and me with birthdays besides getting ready for Christmas. The only thing I want to do for Christmas and we are going to be doing next week is that we are participating in a adopt a family program with an organization that works with adoption and foster kids. So, we are going to be getting presents next week for two little boys and it will be a new experience for us to be toy shopping and kid shopping for Christmas I am looking forward to it though because we will be able to make these two children have a great Christmas!
Mark, Thank you for sharing about your programming that does give me some hope! My original stim from 08 only covered my lower right side of my back and right leg and then after the revision it covered both legs besides that place in my back. After the paddle placement last year I was getting great coverage especially in my legs and for the most part my back. But now with all my chronic pain conditions (IC, pelvic problems, G/I problems) and pain on both sides of my lower back I would love to get all those areas covered and that is the goal The other big problem is of course me being able to sleep a whole night with my stim having to be turned down so low...I keep it on 24 hours but I can't have it on my regular level when I am up during the day or it is jarring and keeps me awake So, I am thinking if we can get it covered in all those areas and maybe my other dr could even give me something for sleep and my horrible internal physical therapy I would have a much better quality of life I know that all this pain and everything else is making my depression worse too so that is why I am going to keep bothering my doctors for help because I know there have to be some options for me out there! I am going to keep my hopes and prayers though and not give up. I will definitely let you all know how the reprogram goes next week I also have other doctor appointments too. I really appreciate your prayers and kind thoughts Take care!

[Sandy Kay]

Dear Tara

My pain is abdominal also and it's taken a few programing sessions to get the stim in the right location. My rep has given me a program just for sleeping because my regular setting will rattle my ribs when I lie down. The stim starts at the top of my rib cage and can make it very difficult to sleep.

We too adopted an eight year old child for Christmas. It's been fun shopping for a young one as my two boys are in their twenties and thirties. It's been a long time since we were in the boys dept.

I pray they can find the right settings to cover your pain areas. You are in my thoughts and prayers.

Sandy Kay

[Sandy Kay]

Dear Tara

My pain is abdominal also and it's taken a few programing sessions to get the stim in the right location. My rep has given me a program just for sleeping because my regular setting will rattle my ribs when I lie down. The stim starts at the top of my rib cage and can make it very difficult to sleep.

We too adopted an eight year old child for Christmas. It's been fun shopping for a young one as my two boys are in their twenties and thirties. It's been a long time since we were in the boys dept.

I pray they can find the right settings to cover your pain areas. You are in my thoughts and prayers.

Sandy Kay

[Mark56]

Tara, that is so cool you all are going to help two children celebrate Christmas! So cool! Reaching out in Outreach, that is my term for it, and I have to share with you it is the GREATEST gift all of Matthew 28, giving into the world. You are doing just exactly that and in so doing are opening yourself and your husband to the pure joy and richness of life by giving of yourselves. There is truly no better means of arising from depression thoughts than that one opens up to give to others. In so doing, it becomes impossible to feel the depths, for you are on the surface enjoying the beauty and warmth of the Son [oops, did I mis-spell something?].

Persisting in approaching docs and reps regarding the multiplicity of issues must yield peace in the conclusion, especially when they continue to be open and supportive of your care because your attitude demonstrates continual effort to BE on the mend. I am sure this is what so impressed my docs about me. "Well, whaddya been doing Mark?"....... "Oh, I have been working pro bono for this client helping them keep the payroll going for their employees, helping this other with their employment contract issues, helping others too." The thing this conveys to doc is my upward strokes to gain ground. This does not mean he thinks less of my case, or provides less care, it serves to help him FEEL helpful and that I demonstrate improvement.

While this UP chatter may not serve to aid all who have needs, and mind you I have been down those miles of road..... I just know regardless I did not want to allow myself to become defeated by the pain. Getting out of myself helped.

I so care for you and Jerry, Tara, and PRAY your Christmas Season will be filled with JOY, with Peace, with Healing, and most assuredly with Love,
Prayin,
Mark56

[tchr012]

I just got back home from my programming session and it went very well. However, before we started I talked to the rep about my goals and also my fears/issues about it. I told her that I would be really happy if we could get my stim to cover abdomen/pelvic pain area BUT if not then I would be happy to have coverage on my whole lower back and also in my legs. So, unfortunately we were unable to get it into my abdomen but this was because every time we tried I would get very sharp pressure in other parts of my spine and sometimes in my ribs! This has always been an issue and knew it was a possibility so after that was ruled out we went to work on my back and got the whole low back covered and my legs. Then I also told her about the burning nerve pain in my right leg and how it will go numb and not move and she had an idea to add to my program the option of being able to increase my right leg when it does that since that actually overrides the pain and stops the rest of the burning/numb from happening! I was excited to know this because in my old program when it happened I had to turn up all 3 areas at once and it would cause more pressure and make me have to turn down the leg thus letting the burning then numbing sensation happen each time. I was so happy when I left my rep because my other doctor had told me that this would be forever and they can't do anything because to fix my real problem would end up me being in the wheel chair for the rest of my life. So, even though I am going to have to still deal with my abdomen/right side pain it makes me feel a little overall better to have the majority of it under control!

I also learned an important lesson about talking to your rep as soon as you feel stimulation problems and how it manages your pain because you have to get this taken care of and tell them soon instead of waiting for months hoping it will go away. I used to always be nervous to go to programming appointments or even to call them but it is their job and you are not bothering them and the overall goal is to get YOU to feeling better and if they do not know what is going on they cannot help you. I also think it is very helpful to discuss your goals/issues and even fears with your rep because it made me feel better and she was able to figure out better ways and options that would help me. I know I have had mine since 08 but I keep learning more things about it all the time and that is why I also think it is so helpful to talk to other people with stimulators too because they do understand and can give you valuable information from their own experiences. Thank you for all the prayers and thoughts Jerry and I really appreciate it! Take care and I hope you all have a good week

[tchr012]

Originally Posted by Sandy Kay

Dear Tara

My pain is abdominal also and it's taken a few programing sessions to get the stim in the right location. My rep has given me a program just for sleeping because my regular setting will rattle my ribs when I lie down. The stim starts at the top of my rib cage and can make it very difficult to sleep.

We too adopted an eight year old child for Christmas. It's been fun shopping for a young one as my two boys are in their twenties and thirties. It's been a long time since we were in the boys dept.

I pray they can find the right settings to cover your pain areas. You are in my thoughts and prayers.

Sandy Kay

Sandy, Thank you for your kind reply, prayers and thoughts! I am so glad to hear they got your pain areas covered and I also know what you are talking about when you sleep I feel jumpy or restless if its on to high when I lay down and it definitely keeps my body awake! I also have to turn it down when I am in the movie theatre because surround sound sometimes affects it if I have it on really high but its little tricks you learn along the way That is so great that you adopted a child for Christmas too I am quite excited because its the first year well actually first time we get to shop in the toy aisle so it will be a neat experience. My mom gave me a puppy last year for my birthday/Christmas present and she has been our "baby" ever since and its funny because she is now 1 years old but still likes to cuddle and for me to hold her especially when she is sleepy. I really think having her made the recovery from my last stim surgery to go even faster and better Have fun with your Christmas shopping! Take care

[tchr012]

Originally Posted by Mark56

Tara, that is so cool you all are going to help two children celebrate Christmas! So cool! Reaching out in Outreach, that is my term for it, and I have to share with you it is the GREATEST gift all of Matthew 28, giving into the world. You are doing just exactly that and in so doing are opening yourself and your husband to the pure joy and richness of life by giving of yourselves. There is truly no better means of arising from depression thoughts than that one opens up to give to others. In so doing, it becomes impossible to feel the depths, for you are on the surface enjoying the beauty and warmth of the Son [oops, did I mis-spell something?].

Persisting in approaching docs and reps regarding the multiplicity of issues must yield peace in the conclusion, especially when they continue to be open and supportive of your care because your attitude demonstrates continual effort to BE on the mend. I am sure this is what so impressed my docs about me. "Well, whaddya been doing Mark?"....... "Oh, I have been working pro bono for this client helping them keep the payroll going for their employees, helping this other with their employment contract issues, helping others too." The thing this conveys to doc is my upward strokes to gain ground. This does not mean he thinks less of my case, or provides less care, it serves to help him FEEL helpful and that I demonstrate improvement.

While this UP chatter may not serve to aid all who have needs, and mind you I have been down those miles of road..... I just know regardless I did not want to allow myself to become defeated by the pain. Getting out of myself helped.

I so care for you and Jerry, Tara, and PRAY your Christmas Season will be filled with JOY, with Peace, with Healing, and most assuredly with Love,
Prayin,
Mark56

Mark, You always know what to say! I understand what you mean because I also talk to my doctors about my goals of wanting to help children and how important it is for me to be a teacher. I always like to help people and as I have said before that when I lost my job as a tutor due to the accident I felt pretty useless since then and it definitely added to negative feelings but I finally forgave myself and made a plan that when I was able to I would give back and help children again. I also thought this would be a neat project because holidays are often hard on couples that wanted to have children but are unable to so to me being able to make other kids have a good Christmas makes me feel good on many levels! I also have a strong desire to try to help people that are going through similar or the same horrible situations that I had to go through and survive in my own life. I have always said that if I can help someone else through it then me going through it was worth it and I have seen many examples of this over the last year or so. Its so amazing that God brings certain people into your life at the times you need them the most and/or they need you the most. Thank you for the thoughts and prayers and always knowing the right thing to say