Mark,

As you know, I eventually did get through your whole post. Your story is encouraging, and your unwavering faith is so inspiring. Thank you for your willingness to talk with me and answer questions. That means a lot to me!

I realize that the shot is just a short term thing--I just mentally can't get past being absolutely freaked out about it. I know that as the day draws near when I do the trial for the SCS, I will have to get over my fear at least some so that I can pursue this trial. I absolutely refuse to try epidural blocks or cortisone shots--but I suppose that two shots (one for the trial and one for the actual surgery) will be okay. At least you're partially 'out' and numbed. I realize I won't be fully asleep... but having some medicine in me and being numb is more than I'd get if I had to get the shots on a monthly basis. That, to me, is comforting.

It's still scary, but I have learned and incredible amount of things from your journey. I will, no doubt, forget things like restrictions and such by the time all this happens. I have to have a bone scan first and then go back to my doctor before we even set the trial up--so I hope that in the future, that you guys can all remind me of the things I will forget between now and then.

I want to apologize again for my response to your post--I truly hope you know that I was not trying to make light of your situation. It sounds like you have been through an awful lot, and I am thankful that I have not had to go through as many surgeries as you have. I am in awe of your faith and positive attitude. Please know that.

Thanks again for your openness and willingness to talk about this with me. You guys have all been absolutely wonderful to me so far!

Sarah :hug:

Kathy,

First of all, can I just say that I LOVE your username? What a good reminder--and one that I so much needed today. I need to push through these hard times and keep smiling. What a blessing you have been already in this one little message--even down to your username! :)

What an interesting thing to happen in the middle of a post! I write in my CaringBridge website almost daily--and I have started writing in a word processing program. Too many times I have accidentally closed the internet browser or gone idle for 2 hours (which is the limit for the site--then your entry goes poof unless you copy and paste it). Thank you for taking the time to come back and respond--that means a lot.

I'm sorry that the SCS has not been a good experience for you. Have you tried anything else, such as a pain pump? Are you getting any sort of relief? That would be tough to go through all of that only to find out that it does more harm than good. I don't respond to pills because of my gastric bypass surgery, so I am praying like crazy that the SCS is the answer for me. I can't get relief any other way. We'll see, I guess. Only time will tell. I definitely know that there is a possibility that it will not work for me, and though I don't like the idea of going through it all, I'm glad they do the trial first.

I hope that it works for me--but your story is a good reminder that it may not. If it doesn't work, I will have to seek out other options, though at this point, it doesn't sound like I have many. I'm curious to find out what you have tried and if anything is working for you.

Is it okay if I pray for you? You seem like such a sweet woman, and I am so thankful already for you! I look forward to getting to know you more! :hug:

Sarah Mae

Well Sarah-

Forgiveness was shown us so long ago on a hill far from here that we can scarcely do any thing close but try to live in a forgiving spirit. My writing back to you was meant as a means to open eyes and show my care, for I do honestly care. Please remain among us, as we do strive to help one another.

The shots which presage either the Trial or the Perm Implant are not even that, they are IV insertions, probably into your hand or farther up the arm as the ultimate means to safely and less painfully inject saline, antibiotics, and sedation. Ahhhhh....... that blessed sedation.

For the Trial, since wakefulness was necessary, sedation was slight, and the local anesthetic was applied on my back to aid insertion of the two large gauge needles for insertion of the leads for the Trial. If you ever had an epiduragram, this is NOTHING as bad as that, NOTHING.

For the permanent implant, in my spine, I was OUT, that is O-U-T, asleep, gone, in a dream state. Everything else, the music, the jokes, the banter that a surgical team has was dead to my sleeping ears. You would awaken later hurting quite a bit from the major surgery, but, this too passes.

YOU CAN DO IT. After all, you have had gastric bypass. That was in involved abdominal surgery, and I bet you were asleep for that one, too!:)

I am here for you whenever, wherever. Ask away!

Faith in you,
Blessings and prayers,
Mark56 PJ [means Praise Jesus]:)

Rae,

I really appreciate the fact that you took the time, initiative, and energy to read some of my website. That truly says a lot about you as a person and how much you really do care about people! Thank you.

I have been told many many times that I am a good writer, and one of my dreams has been to write childrens books. I have started to write a couple, and hope to someday have them published. They are just general books--but I would love to someday write specifically for children with disabilities (or without!) about acceptance and God's love for them. I took German classes for 5 1/2 years and am currently brushing up on my German as well as learning Spanish through a free online program through my local library called Mango. I hope to someday write and publish books that can be translated into German and Spanish. I'd also love to write a book for young adults/adults about pain, but I am not totally confident in my ability to do that yet. We'll see--maybe someday.

For now, though, I love writing in my CaringBridge. It not only keeps everyone that cares about me informed, but is a form of therapy for me. :)

The baby is my friend Katie's third daughter, Audri. Her kids are 3, 2, and 4 months. I can't imagine! She's a cutie--I got to meet her last Tuesday. I love babies, and always wanted to have 6 or more. Too bad that I am bedridden now, and the doctors say it will be that way for life. I'm not willing to accept that "death sentence", though, and we'll see what God says about all of that! :) I wouldn't be alive today if it weren't for my faith.

Last night (around 5:15 pm) my doctor called to talk about my vitamin level results as well as the fentanyl patch. He told me to put two on at once, and try that. He will be out all next week (visiting family), so I am supposed to call on Friday and tell him if they are working--either way, he will need to give me a new prescription, because I won't have enough to get through the next two weeks. I'm glad we called when we did, or I would have called on Monday looking for more, and would have had to wait a whole week! Unless, maybe, another doctor could prescribe them for me--but that doesn't always go so well. I haven't noticed any relief yet from 2 patches, but I'm hopeful. I have tried them in several spots, but there are only 5 or so places the information says you are allowed to place them. They are pretty limited in terms of placement as opposed to other patches, such as a hormone patch (I have never had those, but a dear friend of mine that is 64 and used to be a nurse said that she could place those almost anywhere. The fentanyl patch only lists 5 or 6 spots--and half of them I can't use due to extreme irritation).

The lightning shocks are the worst kind of pain (for me), and the most extreme pain. But I do have all sorts of pain. I have numbness, shooting pain, stabbing pain, intense burning pain, aching pain, spasms, shocking pain... it's not just one type of pain. But even the most intense burning pain is not as bad as these shocks. So that's what I talk about the most--the shocks. That and the spasms. The spasms are okay when I'm in bed, but if I have to get up to go to the bathroom, the spasms make it so painful to walk.

The pooling, of course, is what is keeping me bedridden. The neuropathy pain wouldn't be any worse if I sat up in a chair as opposed to laying down. The pain does get worse when I walk--but there's no reason it would keep me confined to a bed. (It truly does feel like a prison sentence). However, the pooling does keep my in bed because the only way to stop the pooling is to elevate my legs and feet. That is what discourages me the most. I haven't left the house since graduation (and I BARELY made it there and barely was able to walk across the stage--if it would have been a few days later than it was, I would not have been able to go. Thankfully, God worked it all out and I was able to walk across the stage, and two days later the major pain set in), except to go to the doctor. Even those trips are so very hard on me... but I would give almost anything to go out to eat or go to Walmart to just walk around--or not even walk, but be pushed in a wheelchair! I so desperately want just a little bit of freedom to get out and be myself again. Being bedridden is what discourages me the most. The pain--I can live with. Yeah it stinks--but I've dealt with pain (as you know) since I was a young child. I don't remember life without pain. I do, however, remember life without being bedridden, and this is very hard to be so confined.

I am thankful for all the encouragement I've found--and all the new friends I have made here. As wonderful as my close friends are--they just don't understand any of this. It's hard to relate to them when their biggest problems are not earning enough money to go out and shop... whoopee! I can't work (obviously) and don't have enough money to pay my bills, and most of my medical bills have been sent to collection agencies, which is affecting my credit. To me, they have it SO easy and they fail to see that. It's frustrating...

Anyway... thank you again for all your help and caring! You truly are a blessing from God--I'm so thankful for you!

Sarah :hug:

Jackie,

Wow. I hadn't realized how many people had commented on this post until I sat down and tried to respond to each of them! :) Nevertheless, I am grateful.

I'm glad you finally got your SCS. My doctor stated that he preferred to try the more aggressive forms of treatment first instead of trying countless things that won't work--like medicine has proven to not work for me. I know it will still take a while--there's hoops to jump through. Insurance, trials, scheduling, etc--plus I can't even start that process until this bone scan is underway--and that hasn't been pre-approved yet.

However, I have read so many wonderful stories of how many people have been helped through SCS, so I am getting more and more excited about this. I really hope the trial goes well and that it gives me some relief, because this could be the answer I've searched for... for what seems like forever!

I've read a few times that people had a long period of time after the surgery that they couldn't shower. That worries me a bit, because I feel so gross if I don't shower at least every other day. I used to shower every single day--but now it is much harder, so I shower almost always every other day, but sometimes if the pain is bad, it is every 3 days. How long did each of you (whoever is reading this) have to wait to shower after having your SCS implanted? I will request no visitors until I can get up and shower! haha.. gross! I had to wait 3-4 days to shower after my gastric bypass surgery, and even that was torture for me.

I look forward to getting to know you more as I walk along this journey! :hug:

Sarah

Mark,

I had wondered what PJ stood for! I must have missed that in your post--I saw everyone talking about naming their SCS and then I saw you kept saying PJ--but couldn't figure out what it meant besides pajamas! haha :)

Indeed I survived GBS. And yes, was totally out for that. It's the trial and not being out that worries me the most--but I will try not to worry... and take it one day at a time.

The GBS was very painful (afterwards, of course..). I didn't quite realize that they would be cutting through a lot of muscle--and was so sore for a month or two afterwards. Then I put some cream on my 6 incisions to try to stop the itching (when it started to heal), and instead of relief, got an allergic reaction! It was NOT a fun experience! And of course, the GBS is what caused the neuropathy... I look back and say that if only I had known what kind of pain it was going to cause me, I definitely would not have had the surgery. However, I don't know if that's totally accurate. The neuropathy stinks and I would have liked to prevent it--but, I could easily have been dead otherwise from a heart attack or something else. The surgery probably ended up saving my life--but I did get the short end of the stick when I developed neuropathy. I know lots of people who have had the surgery and had no complications and no neuropathy--and I got everything! Oh well... I guess I have to keep reminding myself that if I am going through so much--Satan must really want to keep me down... which means that God must have something truly amazing planned for my life. Gotta keep thinking positive, though (as I'm sure everyone here knows) it is not always that easy.

Thanks again. :)

Sarah :hug:

the journey
 

I am on that journey too. I now await my NS to call and set up my second cervial fussion. This time C-3-7- enough said. I hate needles in the worst way. I was so anxious I threw up. For the whole week before I was hell to live with. I cried the whole time. I had my first spinal epidural. I submitted to this with fear, It was actually this same PS told me first about the CT. I had no bad effects from what was used on me Kanadol 80mgs. I had read all the horror stories about how bad theirs turned out. My two epidurals, did help. I was just as shakey the second time. I think my surgery will be before the next one is scheduled, so I will be hopefully not required to to it. My hope is of course my surgery will help. I did not experience very much pain at all. I can tell you the details, because he talked to me during the proceedure. He was calming to me, and understood me being nervous. I guess if I do indeed have to do it again, I will get through it better. I think so much of it is fear because we are in so much pain already. We do as humans not like pain so much. I would talk to you any time, I do wish you the best. I'm in for A

some help in the shower dept.
 

I found a great little product. They are adult pre-moistened wash cloths. They are expensive but boy are they worth it when you want to wash up and can't. You might like them. ginnie

Hi Sarah Mae!
 

Hi Sarah Mae! :welcome_sign: to the website and our little group :) This is a really great place for supportive and understanding people that can relate to the struggles you are going through! I would have been here sooner but I am having some problems but here I am now. I would like to be your friend to and I also read your website. I am so sorry for all your pain and medical problems and it is extremely hard going to college through all of that.
I started college in 05 to be an elem teacher but was in an accident in 08 that derailed school for awhile but now I am back on track and I think you are such a strong person and should really be commended for getting through school! I was also told by various teachers that I would have to change my major and never be able to be a teacher or work with kids! And I did kinda bounce around from major to major but then I realized all I want to do is work with kids and be a teacher so even with me being so sick and in pain I am working towards my teaching license again ;)
I also know what it is like to lose your friends because I have been sick with various things since my teen years and you really find out who your true friends are. I think alot of times we lose our friends because they cannot handle us being sick or in pain all of the time and it makes things awkward. I know most of my old friends just never have been through anything like that so they could not understand and just did not want to deal with it anymore. I am lucky though because I was able to lean on my family because my mom has pretty much the same illnesses that I do.
I know things are really rough for you right now and I can relate to some of those things that you have been through! I also have a lot of faith in God even though sometimes I think that he thinks there is way more for me to handle (then I can handle). I am glad that you have great doctors because that is really important! I have been through enough bad doctors so I know exactly what you are saying ;) I am also glad that your mom helps you out because my husband has to do a lot for me because I cannot drive and I have to use a walker or the wheelchair to get around in. I know you are having a very hard time and I wanted to know you are in my prayers and thoughts. I really like your website and I agree that you would be a great writer! I hope that you and your doctors can find you some lasting pain relief whether its the SCS or something else. Also, do not worry about the psych eval its just a bunch of questions and it does not diagnose you for anything. Besides I have depression and anxiety but with therapy and medication I was doing okay and I don't think that made my SCS no longer work and its okay for people to be depressed when they are dealing with chronic pain ;) My therapist told me that she would be more surprised if I was not depressed or on antidepressants because chronic pain and illness changes your life and you have to give up a lot of things you used to love doing and everything is more difficult and takes it toll on you. Take care and I am also happy to answer any questions you have about the SCS since I had my implant in 08. Even though I am having problems I still believe that the SCS is a godsend because when mine was working right I was able to walk all over campus, exercise, and drive! Let me know if there is anything I can do for you too, I am not posting much since I am dealing with alot but I still look at everyone's posts!:hug::hug::hug::hug:Tara

Hi again Sarah

Yes its true you cant shower for the first couple of weeks. Im now 19 days over my surgery and I have been back yesterday for a wound review and all is well. So Ive been told I can have a shower (well the elation was unbelieveable) I understand exactly how you feel as I shower everyday generally. But having my husband wash/blowdry my hair and help me wash was a sight for sore eyes!!!:winky:but hey we managed......

Dont feel 'gross' some soap and water whether its from a shower or just on a flannel will do the trick, or some wet wipes also..

You will be fine:hug: