So that you can move on toward trial and get "the feel" whether thia is right for you may all of your preparatory appointments be good, prepared, and all go well at that time!

Hallelujah for you!
ASAP,
Mark56 PJ

I don't normally do this... I usually write my posts for NT and then write a different thing for my CaringBridge.. but I don't feel good right now so to fill anyone in that wants to know, I am just going to copy and paste what I wrote in my CaringBridge a few minutes ago. I don't have the energy to retype the important parts... and I don't think anyone here reads my CaringBridge.. so hopefully it won't be redundant.

"I am quite frustrated right now.

Let me back up before I get into that, though.

I went to the clinic around 1:15 and had blood work done. It's been a month since we checked my vitamin levels, and we need to check them again. If they are going down like they were last month, we need to know and intervene. I am hoping they aren't going down that quickly, but am a bit nervous about it. The results should take a few days and then I will have to wait until the results get here through the mail. I'm hoping that by Friday I will know.

Then I went and got my B12 shot. I have to get that after blood work, not before.. or it will affect my results of B12. I hate going to get this shot. It doesn't hurt at all.. but it makes me feel horrible. Nobody can understand that, because B12 is supposed to make you feel better and have more energy. It makes me feel like I have a mild case of the flu... just makes me feel sick and gives me a headache and worn down feeling for 1-3 days. Though, these days I feel that yucky almost every day, minus feeling sick to my stomach. I don't know why it has the opposite effect on me. Last time I saw my family doctor, he said "You never do anything by the books"... ain't that the truth!

So then my mom took me to my psych evaluation for the SCS process. UGH! That is why I am so frustrated.

I walked in feeling confident and not at all nervous. After all, my pain management doctor said this was just to make sure I didn't have totally unrealistic expectations that this would make me 100% better (and I don't) and to see if there was any undiagnosed depression or anxiety (and there isn't).

So we started talking... he asked about when the pain started, what doctors I saw, treatments, etc. I told him the story. He also asked questions about my family and where I grew up. I told him all of that information.

It was an hour and a half and I was talking almost the whole time... so obviously I said a lot. But here is what I am so frustrated about. I told him that one of the three options my pain management doctor gave me was to do the shots in my back. I told him that they scare me... and that yes, I was aware that when they do the trial for the SCS, the leads are placed through a needle into your back. However, you are partially sedated/numbed/whatever for that so I wasn't worried about my ability to handle that. It's the thought that every 3 weeks or so for the rest of my life that I would have to go through these shots.. that scared me. And the other thing is that I have read many stories of people who have gotten the shots (I don't know if they were epidural blocks or cortisone shots or something else--there are several kinds of shots) and it made the numbness and pain in their legs and feet much worse. Think about it--women get epidurals during labor to numb from the waist down... it numbs the legs and feet. That isn't a solution for the pain--I don't need more numbness than I already have.

The rest of the time I talked honestly about my pain. Yes, I said I have a lot of pain, but there is a difference (that the majority of my family and friends can't seem to grasp) between honestly stating the amount of pain you are having versus saying "Woe is my! My life is awful and I hurt so bad that it is not worth living anymore... how depressing is my life!" I don't think people should be forced to keep the pain inside just because certain people can't handle the truth. I said I deal with a lot of pain, and yes, it has changed my life. I didn't get to move several states away and teach in a classroom. Instead, I am stuck in bed all day. That doesn't mean that my life is over. I told him what I do to keep myself busy. I said I was going to be working with a pastor at my church to start a ministry for people with disabilities/sicknesses. I said that my goal is ultimately to teach, but if I am unable to because of my medical problems, that I will do whatever I can to serve and reach others where I am at. I feel like I was so positive--but not in a fake "I'm going to trick you into believing I don't have any problems" way. I just was totally honest about the good and the bad... and that overall I remain very hopeful and positive. I think that's the honest truth.

He said something about he didn't see any problems "except the anxiety". UGH!!! So out of an hour and a half, he may say I am not ready for the SCS trial/surgery because I said that the shots scare me???? I am not at all terrified of the surgery aspect of this all... and I can't imagine that every person that has a SCS was never scared about any of the steps in the process. Yet, the way he made it sound, that one little comment I made may stop me from moving forward with this whole process.

Is he kidding me?

Really. I can't tell you how upset I would be... at him and at me... if that is the case. I was just being totally honest, and if I knew that something that small would ruin this all for me, then I wouldn't have said a word. I was just trying to do the right thing by being honest.

If I have to suffer the rest of my life for it, I will be really upset. And what will I learn? What I'm already learning thanks to some of my so-called friends and family... that people can't handle the truth and that with some people, you have to act peachy keen 24/7 because even a little truth about the not-so-perfect aspects of life will make them walk away. Lovely, huh?

So right now I'm feeling unsure and not at all confident... thinking I probably blew it because I was honest. And that really sucks.

I don't know for sure.. I guess I will find out on October 6th when I go back for a follow-up appointment with my pain management doctor.

Until then, I guess I will just try to not think about it. It's hard though--I am frustrated.

I don't have any plans for the rest of the day.. my feet are hurting badly because my legs were down the whole time... they were supposed to have a foot stool for me, and they didn't. Also, I had to walk down a full flight of stairs to get to his office. It was an exhausting trip out--the clinic and the evaluation.

So for the rest of the day, I will rest. I am going to go read a book for awhile until my mom comes home, and then I imagine we will watch some TV and relax. She isn't feeling well today--she thinks she may have the flu or something. I hope she is feeling better soon.

I feel horrible from my lovely B12 shot.. I sure wish I could get enough B12 in other ways so I could quit getting this shot... I hate how badly it makes me feel.

The shampoo that I am using is causing major irritation all over my head/scalp, but especially on the skin next to my hair.. such as behind my ears/on my neck/on my forehead.. my mom says it is causing me to break out... not like pimples, but it is red and irritated. I have such sensitive skin anyway and I switched to using Johnson's baby wash in place of body wash because everything else irritates my hands/body right now. I can't use it on my hair anymore, though, because it is making me break out. I have no idea what I will use... I don't know if there is anything more gentle than what is made for babies!

It's these little irritations in life that annoy me the most.. I don't know why that is.

I'm off to take my mind off of today... hope everyone is doing well..."

(((Sarah))) .....
You've had one HELLo of a day and I'm so sorry.....

To be honest, I think those 'psyche evals' are not what they are cracked up to be in a lot of cases. I mean really. Who ARE these people and what gives them the 'right' to think they really 'know' if this procedure is right for us or not?!
You did the right thing by being honest. They won't hold it against you for being honest about the shots. Maybe he is trying to determine, or rather, 'make sure' it's not some sort of actual 'phobia' or something.....
It's human nature to not want to do cartwheels when getting shots.
It won't be the 'deciding factor' in this whole process. It's just that maybe they will feel they need to address the 'anxiety' in more detail, that's all.
Heck, I admitted that YES I am depressed as hell! My quality of life has gone down the toilet since this pain battle began.
I'm betting that as long as you are conveying to 'them' that you simply want your life BACK, or obtain a 'better quality of life' would maybe be a better way to word it.....
The issue with the needles can be discussed in more detail. It's not something that should cause this process to come to a screeching halt.
It sounds to me (at least from what you've shared in your post), that all went pretty standard - with the psyche eval......It's not fun being scrutinized tho, plus, you felt like cr@p because of the B12 shot, plus you had to climb stairs to get to your appt and they didn't accomodate you like you were led to believe (footstool).....it would have been nice if they could have done that for you, so you could be more comfortable that whole time.

It all just kinda goes hand in hand with that all-too-familiar unfortunate reality of how people just simply don't 'get it'......they don't understand what it's like to be in pain 24/7. If 'they' can't 'see' your pain....then to 'them' it's not 'there'. Which leaves us feeling pretty dang lonely and .....ya.
I'm so sorry you are feeling like this.
We 'get it' though.....so you are among friends here.

Anyway, I just wanted to (((hug))) you.
You've had quite a day.
You can sure use one.

Caring Always
Rae

Hugs for Sarah after an awful day. Yeah, I know the eval leaves you wondering, "did I do OK?" You will or should receive a copy through your doctor unless the therapist sends a copy to you. Sure, you admitted to some anxiety, but then, who would not experience anxiety when in the process of seeking major surgery. Everyone feels some.

I am sorry you were not accommodated better during the appointment. Goodness, I was so bold as to lie on the floor for an eval along the way because the psych person had these awful uncomfortable chairs. I laid on the floor after taking one look at the chair. His opinion included a reference to the horrid pain I was experiencing.

Here is hoping that all will be well.
Prayers,
Mark56 PJ

Thanks, Rae and Mark.

I truly hope that that one little comment doesn't stop this from happening.. if it does, I will be very upset.

I'm hoping it's not a huge deal. It sure feels like it is, though.. right now at least.

I hate that I have to wait until October 6th now to hear... waiting is no fun for anyone.

I feel like I was able to be so positive--and not because I was lying, but because I do not struggle with depression and anxiety (except with those shots, of course) and I am hopeful and positive. He didn't seem to think I was in any pain because I didn't bring my wheelchair in. Well, if I would have, I wouldn't have been able to use it anyway! I figured it was not worth my mom having to haul it out of the trunk (she is feeling awful today) for just a few steps inside. I knew I could sit down (and thought I would be able to elevate my legs... but obviously that didn't go as planned). I only went up and down the steps because I didn't have a choice--his office is downstairs. He made a comment as I was leaving about how well I was getting around.

Yes, I am more mobile than I was earlier this summer. Is that because I am in any less pain? Heck no. It's because I have been forced to get up and do things on my own because my mom is at work all day and I have nobody here to help me. I have no choice but to "be mobile" and "move around" when needed. Just because I'm not paralyzed doesn't mean I'm not in pain! People can be in pain and yet run a marathon--I've had friends who have done that! I certainly couldn't... but I digress.

Overall he was nice, and understood most of what I said... he was one of the few who knew what I meant when I said I have numbness yet incredible pain and that doesn't make sense because I always thought numbness=no sensation, even pain. I don't mean to make him out to be a bad guy... he was really kind. But it is frustrating when at the end of all that, the only thing he could recite back to me is that I have anxiety about a shot in my back. So what? It was just a frustrating day.. and I sure hope that this doesn't end the process, but I just have a bad feeling that it may.

Thanks for the hugs, love, support, understanding, and caring. You guys truly are wonderful. I am so thankful that God has put each of you in my life! <3

Sarah, I just now got online I am so sorry to hear that. I am a bit confused though because my psych eval consisted of answering a big test (MMPI) and that is all I did. The psych did ask me about my expectations and all that and I even told him I am on antidepressants and have anxiety...but I still was able to get it so I am thinking what you said won't be a huge issue because all of us or at least most of do get depressed and/or anxious because of being in pain. And if your answer does cause you not to get it you can talk to your pain doctor and see if there are other options. And also it is perfectly normal to be nervous about the whole stim process. For me, the trial was not a big deal, I mean I don't remember really anything about it except when the cat pulled my wires out when I was asleep And also the shots were bad for me and caused things to be much worse although it does help some people, and my doctor even numbs/sedates you for the shots. I understand your frustrations and concerns and the only thing I can do right now is send you lots of hugs, prayers, and tell you that I am here for you! Take care of yourself and let me know if there is anything I can do for you! Love, Tara

Sarah

Im so sorry to read that you are so upset and frustrated with your evaluation.
Im sure that the Dr didnt mean to upset you at all. I too like Tara did an evaluation where I was asked a selection of questions relating you myself, my family, my daily life, my home life, my marriage, my social life. Some of the questions were repeated in different instances. This was how she got a broad insight as to how I am. There were times when I did share some information that I though 'oops' wonder will that go against me, but then it was the truth and needed to be said. There is no point in holding back because you need to tell them everything about yourself, even if you did feel, oh heck wish I hadnt said that, because then you know that you have been true to yourself and not hiding anything. That way a full evaluation can be made.

My psych explained to me that when clients arrive for this 'test' they feel as if they are being tried for something that 'might not be there'. This isnt the case. The referring Dr would have sent you for evaluation because your Dr KNOWS that you are in chronic pain and need to go that step further. They will know that you need something 'extra' now to manage the pain. Be it a pain pump or SCS or whatever. The psych also knows that the reason you are coming is because you are in chronic pain. Dont think they dont know your full background because they will and your Dr would have informed them before you went to meet them.
I was also told by my psych that the reason for these 'tests' prior to your implantation is that they want a full insight into how you are, how you think, how you feel etc. They arent there to catch you out whatsoever. If there are any underlying 'problems' that need to be address before you can proceed with the SCS. For example, she told me about a lady who came to her, who was in chronic pain for years. She was being referred as she was hoping to have the SCS implanted. But on evaluation the psych found that she had some domestic problems. That this lady felt that if she didnt have chronic pain and got the SCS and it helped her, that the domestic problems , which are a result of her not being able to cope in her family life, would basically disappear. So she was banking on the SCS 'fixing' her domestic problem. But the psych said, before they would consider her for the SCS she would have to get help with her domestic problems and not to be depending on the SCS to do so. So here is an example of a lady with 'underlying problems'. She did have many examples for me but Im sure you get the gist of it. They are there for your own good.
When I was finish my psych told me there and then what the report would say, that I was ok to proceed. Im sorry that your psych didnt do the same for you. Im wondering if you could perhaps ring them and ask them what will they be saying to your Dr. Afterall, they would have made their mind up as soon as they spoke with you and finished the evaluation. October is a few weeks away and its no joke waiting and waiting and waiting to find out. Think about ringing.

I hope you feel a bit better today and try to be positive. Im sure we will all be congratulating you too in the coming weeks

Jackie

GUESS WHAT????? I WAS JUST ACCEPTED FOR SSI/DISABILITY AND I WILL BE GETTING MEDICAID (and my money!) within a month or so!!!!!! I am THRILLED.. this is a HUGE weight off my shoulders... with no income and being bedridden... and my mom is a single mom with so much debt that she is in the process of filing bankruptcy... I am SO RELIEVED!!!!!! Just wanted to share my news with you all, even though this has nothing to do with a SCS. Except, of course, that all medical is covered so I no longer have to worry about the huge cost of all of this!

What a WONDERFUL piece of news this is!
I'm so happy for you and your mom! You both are so very close.
Fine example of how God is 'looking out for you'......yes?

And Jackie.... WOW! What a wonderful post!
VERY informative and with a twist of your genuine love and concern. You are so wonderful!
We should put that post on the "Psyche Eval" thread that has drifted down the line........ it's a 'keeper' fer shure.....

Isn't it amazing, Sarah, how one day can be such a 'downer'.....and then the next day can make all the difference in the world!
What's that scripture.....something to do with 'weeping cometh before joy'.....

Thanks for sharing the great news!

For you, Sarah, and for your Mom, this represents a burden lifted. May you see good things begin to shower around you in times to come, and may your eval come back with a positive to proceed with the trial. It is really the trial that is the tell all of the diagnostic conundrum leading up to the potential for permanent implant. The eval is, as Jackie so aptly framed it, a diagnostic means to help determine those who may have other issues which should first be sorted out or those with unrealistic expectations.

ASAP,
Mark56 PJ