Pain doctor apt disappointment
 

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 :hug:

Tara...
 

Thank you for the update :hug:
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 :rolleyes:

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

:hug: Rae :hug:

Hi Tara
 

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:grouphug:

Thank you for your kind replies :)
 

:hug:Rae and :hug: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:hug::hug::hug:!

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

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:grouphug:

Reaching out in Outreach
 

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:grouphug:

Update on my Programming Session
 

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!

:winky: 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 :hug: Jerry and I really appreciate it! Take care and I hope you all have a good week:grouphug:

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:hug:

:hug:
:hug: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 :)

For your Spirit of Uplift
 

I thank you Tara, as you show the positive attribute of looking to find the good in the sharing with your rep, your doc, the children whom you and now Jerry reach out to opens your hearts to joy even through the management of pain. Such good news about the work to sort out the tummy area pain produced by incorrect stim signals..... you know, this is SO MUCH like Yellow on her thread and the problem with the stim producing unwanted tummy and rib area HURT. Maybe you and she can compare notes!

Thrilled for you at Christmas and your birthday! May all and everything be well!!

Blessings and Prayers,
Mark56:grouphug:

Oh TARA!
 

:Head-Spin::Head-Spin: How WONDERFUL that your programming session went so well!

Your testimony on your recent visit with your rep is FANTASTIC!!
Very inspiring for others to read! There are several folks who are unsure and perhaps a bit fearful of how their next re-programming session will go for them. And this will always be one of the biggest issues with these units - the tweek sessions.
What you've said speaks volumes, Tara!

Good communication is high priority. Sometimes that doesn't come that easily when alot of Dr's are too busy or arrogant (in my case) to really HEAR us. Usually the Reps are pretty good at working with us, which is a Godsend, and your post is a great example of how things can and will come together in due season.

You are GREAT, Tara!
Rae
:hug:

My pain doctor dumped me yesterday!
 

Thank you all for the birthday wishes I did have a good birthday! I have been in a lot more pain though with the stuff that my stim is not able to cover :( Physical therapy has made it worse and she even yelled at me last night and basically said that I am not using the tools or doing the right things at home. I have been working very hard on everything including doing these horrible painful physical therapy sessions with no pain medicine :( And yesterday I also found out that my pain doctor office is no longer going to manage my pain and told me to go back to primary doctor. So, I told primary doctor what was going on and they refuse to give me pain medicine too and instead said I have to look up a new pain doctor and then give them that info! Besides through all this I have had to increase my catheter treatments and I am also being tapered down on my antidepressant which is making me very miserable too and I try to stay away from people when I am this depressed/anxious I don't want to bring you all down or anyone else down with me ;) I am really upset though and am so tired of doctors not treating me very good especially when I have documented conditions that are causing the pain and the last time I even asked for pain meds was over a year ago! I am trying so hard to keep everything balanced and working right but its so hard when you are in constant pain and also not sleeping hardly due to the pain and its frustrating! The only good thing that I have done lately is for my birthday we went out and bought the clothes and toys and dropped them at the children's center. Well and I guess the other good thing is that the new changes to my stim are helpful with that nerve pain in my legs so I am thankful for that. I am sorry I am not more positive and helpful right now I am just so over stressed out :( I hope everyone has a good holiday though, we have to do our Christmas celebration later in the week because he is going to be working on Christmas.

Oh Tara, this really sucks! I'm so sorry about this. It sounds like they have you swimming upstream in a strong current. Why won't they help you better than this! You're being shuffled all over the place.
You've sure been thru alot.
Christmas is supposed to be a happy time - and it IS, but there is also an element of sadness for me. We had a huge blizzard the other day and everybody was snowed in. So i wasn't able to do the holiday shopping I had intended. Now that we can get out, my body just won't allow me to do anything! :eek: It's so very frustrating. I feel like a crippled person at times like this. My husband is out and about making Christmas deliveries to our friends and I would love to be with him enjoying the giving spirit. I simply can't. I know this goes for alot of us here at our forum.

We have to lift each other up the best we can and find joy in the little things. I've learned to set my standards alot lower so as to not get too stressed. Sometimes, tho, we can't help but feel overwhelmed.

It's great that your stim is doing a better job. Mine is too and I'm very grateful for this. When I look at where I was this time last year, I'd have to say I've come a long way and am doing much better.

You know you can vent anytime you need to. You aren't bringing anybody down! Better to vent here than at home, yes?

You are in my prayers, Tara. Always

:hug: Rae :hug:

Thank you so much
 

:Thanx::hug:Rae:hug:! Thank you so much and I am so glad I did vent to you. It gets very hard for me at times because I am here most the time by myself and I cannot talk about being sick/pain with my friends because they don't want to hear it and plus they don't understand. I am very glad your stim is helping with your pain but I understand your frustration completely and I have felt that way for a long time especially after the accident when everything changed and I lost the ability to do so many things I used to be able to do. I felt like I had no purpose and I was also dealing with an abusive marriage at the time so that did not help anything. But since then I have been trying to rebuild a life and make a new life. The last 2 or 3 years have really been spent working on and overcoming some very dark past experiences and it has felt like trying to climb up this huge mountain that never stops and makes me keep falling backwards. There are somethings I had to accept and come to terms with while trying to change the things I could. I do have strong faith and I always have had that and that is what has pulled me through and kept me going.

I am so thankful to have my wonderful husband who is good to me and holds my hand through the bad doctor visits and really is supportive and encouraging and a great partner! Even though I am in constant pain and sick more times than well and being told I am going to keep getting worse I am still holding on to two things: I am determined to become a mother someday and we are going to have children either through foster or adoption and my other thing is of course to be a teacher in some type of capacity and work with young children. Even though these things probably seem simple to most people those are the two thoughts that have always gotten me through all my surgeries and now I am up to 20 surgeries in all since I turned 17.

I also had to change some stuff about school because I was having trouble in certain classes and you need them to become an elementary teacher. I was upset because I had worked so hard but some subjects and things are just harder for me since the accident but I found a way around it, and now I am in a different program to work with young children. I am also still very scared to drive and even just be a passenger is hard for me....everyone expects me to just jump in the car and go but I have not driven a car in at least 3-4 years! Struggling with that issue sometimes makes me feel like a failure or at least not normal. My therapist taught me a very important lesson-I use to always say that I just want to be normal and do normal things that people my age do and she told me that I have to find my new normal and create a new life around my new normal. Its definitely easier said than done but I am working on it!

Thank you for keeping me in your thoughts and prayers :) I always:smileypray: pray for everyone:grouphug: on here too that you all find some relief from your pain whether it be by stimulators or not :) Thank you for listening to me too!

Normal?
 

Tara, my deep and abiding friend, YOU heard and repeated significant wisdom regarding normality. Frankly, there are so many issues about life with which anyone struggles, I strain to grasp the concept of normality...... and you know why, because were we to be a fly on the wall observing someone in all situations whom we regard as normal, we would eventually learn of their personal stuggles as well. Everyone struggles...... Everyone. Many are capable of putting up the great front to ward off passers by; but, IF one stops to regard them for longer than mere moments, the facade truly begins to thin, pale, become translucent.

I am grieving for you the bump with your pain management doc. That is one with which I whole heartedly agree alongside dear Rae..... that sucks. Talk about normality. One would commonly view such as scenario with ultra jaded eyes, and it is HARD to get through the garbage to weed out the truth. You know what? Among our neighbors where we used to live was a group of doctors, physicians.... we thought friends. One of them was a physician to me, and then one afternoon, I learned from this person [can no longer call him friend] regarding his departure from his medical practice to go to a new one, OH, and by the way, he would no longer see me. You know what? For the last four years we lived across the street of this mystery, wrapped in a contradiction, surrounded by an enigma that man never spoke to me again, and to this very day..... I have not a clue what I did, if anything, to cause the rift. Does this feel somewhat familiar? I do understand where you are. AND IT HURTS EMOTIONALLY....... this is why we write on here and also speak with those who counsel us professionally.

You will survive this transition to another pain management doc. Sometimes, I feel pain docs, well any doc, because all are human, arrive at a point for some reason where they have difficulty coping..... their own personal "welcome to the human race" moment. This occurred to you. It occurred to me. We are not ugly bugs waiting for a shoe to stomp us.... we are humans with will, and especially with God, and we move forward, especially with that providential assistance. Goodness, I have to have my "daily bread"...... well, daily..... and if I attempt to skip a day out of busyness, I am soon reminded whereof my redeemer cometh.

This IS Christmas, the season of celebration of Christ.... and I have thrilled at moments to wish some folks a Merry CHRIST-mas. Thus, I yet answer any passer by who speaks the "leave me alone greeting" of "how are you" with a well met reply "I am blessed, how are you?" Do you know HOW MUCH light this brings to my life? And also to theirs? Immeasurable, for to a person, they stop, turn, and share their blessing with me.

You are re-VIEWING your career educational path for the sake of self preservation. Doing so, you are embracing the means to do whay your counselor spoke. You are re-defining NORMAL. That particular word has been over centuries the foundation of pain, rejection, ostracism, belittlement of those who have been perceived as "different" by someone else. When I was young, it was the foundation of murder in large numbers of people who looked different than some others. Now that I am older, and when in a wheelchair, I ..... I am the oddity, the person in the way, the non-entity ignored for my difference. We who are human work so much harm on one another over this word Normal. Would that it could be banned from our syntax.

Tara, beyond normal, YOU are a person who is blessed and loved by so many, includoing us here. Take that to the bank of emotions, for it is real. God? Why, God loves you and all of us beyond even the slightest comprehension. So, pick yourself up, dust yourself off, Knowing Normal means nothing to US, for we are achievers, doers of good for others, people who love as we have been taught to love, then just take one step at a time.... one tiny step..... in life, realizing the sum of those steps will ultimately lead to the Wholeness of the good you bring to all whom you meet.

Agape, my friend,
and Merry CHRIST-mas
Mark56:grouphug:

Merry Christmas to you too :)
 

Thanks for the reply :hug:Mark, I am always so motivated and inspired by what you have been through and also your strength to make a new life for yourself! Yeah I agree with what you are saying about normal...it took me awhile to understand and accept the fact that I will always be different from my friends/family because of my medical conditions/and the stuff that I have been through. But I know now that its okay to not be like everyone else and I was always nice to people regardless of differences but I was not being that kind to my own self and became very critical and judgmental. I am now trying to focus on using my differences in ways that help others and look at them as learning experiences. For example, when I spent that time on campus with my walker and the wheel chair I learned how hard it is for students in wheel chairs to even get to use the elevator! I used this information and the other stuff I learned to try to get changes happening within our adaptive services department and also to raise awareness that these issues even exist! I also agree with you about the whole "happy holidays vs merry Christmas " and its funny because I never know if it is okay to even put on my facebook Merry Christmas without it causing an uproar ;) I have had a few days of perspective about the pain doctor situation and some other stuff and I guess it was just time to move on. I found out the scary (to me) truth about what they put in our medical records and also what they make up and put in our records from my situation with the court thing. I always am nice, courteous, and am proactive when it comes to my health care yet it seriously upset me to see the things certain doctors said about me and now it is permanent :( I do get tired of having to get new doctors but its just the way it is and I don't hate him or anything I just felt bad about it because I actually liked and trusted this one and that is hard for me to do. I also know that I have to be careful of my feelings/emotions right now because a lot of this negativity is popping up because of the whole cutting down on my antidepressant situation. I mean it is Christmas and here I am feeling bad so I have been baking all day making treats for my husband's Christmas pitch in at work tomorrow. Making Christmas cookies, pumpkin cheesecake, and sweet potato souffle really have a way of getting you into the holiday spirit :) And also thinking about the little boys that we helped and how excited they will be when they open their presents tomorrow makes my heart very happy :) I am also working on a blog about all my experiences with the stimulator so maybe it can help people learn more about it -from the trial back in 08 to now. I hope you and your family have a very wonderful CHRIST-mas :) :grouphug: :hug:Tara:hug:

Oh yes, Oh yes indeed!!
 

From our family to you and Jerry, we send blessings for you, Tara, that Christ-mas come into full glorious blessing for you even as you have reached out to help little ones to feel the Joy!!

God blesses you even in the very making of the souffle', a blessing of contentment at achievement, knowing it will be a blessing to others as Christ is celebrated, and that warmth will flow through you, and may it embrace you in fullness of blessing!

Merry, Merry Christ-mas,
I just love saying and writing that,
Mark56:grouphug::circlelove: