NeuroTalk Support Groups - View Single Post

smae · 09-20-2010, 04:35 PM

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..."