my book is out on paperback and I am so excited. it is available through createspace https://www.createspace.com/4546715
hope you will get a copy!!
Tag: cauda equina syndrome
Doubts
Doubts
I just got through my second read through edits on my book. Wow, I didn’t know how much of myself I am putting out there. I know I put a lot out in this blog, but having it in paperback is something different. Not saying it won’t sell, but I am just having my doubts about myself being out in the world, my wounds really exposed for all to see. I know I have an important message out to people, that people who survive suicide attempts can get their act together when they think they can’t. I also talk a lot about CAMS, probably more than I should, but I believe in the philosophy too much not to say a lot about it.
I am worried about my father. He is not doing well and definitely not himself. I spent the morning with him at his stupid PCP that took forever. I wish they would do something more for him but other than hospitalizing him, there is nothing more they can do for him. And I am not sure where he would go for his condition as his providers are scattered throughout the Boston area. Like me, he is a complicated case. And because his doc wants to see him later this week, I had to reschedule my appointment for my pdoc. Sucks, because now I know it will be at least another two weeks before I see her again. UGH.
I have been up since 5. I woke up in pain and still have the pain. But because I was driving most of the day, I couldn’t take anything for it. Now I am home and I am relaxing so I can take something. Tomorrow I am not going out. I need to recoop from today. I didn’t walk much but being up early and being in pain all day takes a lot out of you. I was hoping to have a session with my therapist today but doesn’t look like it is going to happen.
I tried taking a nap today but my book was on my mind too much. At one point I got so nervous, I thought I was going to puke. I emailed my editor and she said the decision was up to me. Thanks, that is helpful. People are looking forward to my paperback and what am I going to do if they don’t get it?? I just don’t know. If you are reading this and would like a copy of my book, please comment and tell me. Maybe that will sway me…
The invisible weakness
I spent most of the day wondering what to write today. I thought I would play with my dragon software that has been laying idle now for a month but had a yearning to listen to Garth Brooks so nixed that idea.
I have been reading the book “writing the breakout novel” by David Maass. Though I never attempted to write a novel, he is giving me ideas for my next book. I am thinking of writing about the most traumatic point in my life but fictionalizing it. I think I can do it. I don’t know if I can write a book about it, maybe a short story, but who knows. I will outline the chapters and such. This book helps with all of that. I could have a breakout novel or novelette.
On another note, been stewing on this all week and I finally can’t hold it in anymore. I have had trouble with my left ankle since 2009/2010. I can no longer stand for long period nor walk long distances like i used to. The reasons for this is not clear as every single test (xray/mri) has come back normal. The only thing that my doc still refuses to believe to this day (and I brought it up to him on Monday) is that I have nerve damage that flares up when I do too much because my ankle becomes fatigued. Because of this, I have gotten an AFO in 2011, took 2 bloody years to figure out that when I am fatigued, my ankle goes from a scale of 1-5, a 4 to a 3/2. AND HE STILL REFUSES TO BELIEVE THAT NERVE DAMAGE IS CAUSING MY PAIN. He thinks I haven’t found the right doctor yet. I have seen 10 of them over the course of 2010 to 2012, specialists from orthopedists, podiatrists, physiatrists, you name the specialty and I have seen them. But because NOTHING shows on the xray/MRI, they don’t want to treat me. Frankly, I know what is causing my pain as long as I don’t exert myself but that is hard to do. Just doing normal activities, standing to make an egg for example, will tire me out or standing to take a shower. I finally got disability but my doc thinks I could be more functional! Yea, if I could go back in time and fix my CES and not see the damn chiropractor! I am just so frustrated, actually beyond frustrated.
So when I bring up the fact that I have nerve damage in my foot and weakness, he brushes it aside as if it is nothing to think about. HUH??? But he still writes out my pain medication script and for that I am grateful because otherwise, the day he doesn’t do that is the day he signs my death certificate, far as I am concerned. My therapist and psychiatrist know this. Actually, I think my psychiatrist knows what is causing my pain but psychs don’t prescribe narcotic meds. It is a shame. Because if she could, and I wouldn’t have to deal with my PCP idiot, I would be a lot happier. I wouldn’t have to go through the rigmarole every month. There isn’t a doctor out there that wants to help me anymore that knows about nerve damage and weakness. If there was, I am sure I would have found them by now. I have seen at least five ankle specialists alone but because nothing shows up on the Xray, they just think I am fine. Well, I am fine. The damage is not in my tendons or bones per se. It is with the muscles that support my tendons and bones. When those muscles weakens, I start getting fatigued. The more fatigued I get, the more I try to walk improperly and that in turn causes me pain. I just wish my doc could understand this formula but nope. It has to be a PHYSICAL structure that is causing this. I am starting to think that if he were a psychiatrist, he wouldn’t believe I have depression because he wouldn’t be able to see it. Same thing. How I wish weakness (physical or mental) could show up on an X-ray. Maybe more people could be helped.
Right now, after all the little walking I did to get my mocha and a half gallon of milk, I am hurting. I have therapy in two hours and I am contemplating taking a pain med. But I am in a messed up mood anyways, so what difference does it make if I take it or not. Pain will only get worse and I rather deal with this level of pain than see it get worse.
day gone wrong
I had a long day. I thought I had an appointment with my neuro but apparently due to major miscommunications, it was yesterday, not today. I went there for nothing. No matter because I am cancelling the appointment on Monday. I am not going to miss an appointment with my therapist because of an incompetent office staff. I even called to confirm that I had an appointment today was told I did. I am beyond pissed and this isn’t the first time this has happened.
I started writing about the darkness and then got so aggravated I couldn’t think of what I wanted to write other than what an asshole staff my neurologist has. I will work on it this weekend. I am still in a bleak mood and as long as that doesn’t change, I think I will be fine for writing more on it.
In my frustration, I emailed my editor and blasted her with an ultimatum, either work on my stuff or I want a refund. She said that she will be working on my stuff this weekend. I hope so. I had to wait so damn long and she better be pristine. Or I am going to be more pissed than what I am right now. If we work this weekend, I can still get this hopefully printed by the second week in April. I won’t be able to have copies of it for the AAS conference but that is ok. I didn’t think production would happen anyways for that. Looks like I can’t back out of it now.
Last night I had some hallucinations that were not fun. Ever since my cousin told me about pink slime, I have been having paranoia about eating hamburger meat. Last night I was hungry as I skipped lunch and I bought hamburger patties. The voices got so insistent that I was going to die from eating this burger it took the enjoyment of eating a burger away. I still am having the same voice telling me there is pink slime everywhere. I am trying to ignore it but this voice is one of the annoying kind. I have to take some trilafon to make it go away. Or I am not going to be able to eat anything, even if I make it. Even as I was eating my burrito today, the voices were calling the guacamole pink slime. I was getting disgusted so only hate half of the burrito. Now I don’t know why these voices have crept up. I know I am a little stressed with my book and all. And today was a real annoying day. My cousin kept on calling me three fucking times just to bust my balls. I kept telling him I was annoyed and didn’t feel like talking but he kept on calling. And no use trying to just have him talk to voicemail because he will start calling my mother’s phone and bother her. I kid you not. He is the literal meaning of pain in the ass.
I cried today because I was so upset with my neurologist’s office staff. I know I am going to get charged for missing the appointment but I am NOT going to pay it as they gave me the wrong information. Plus no one called to confirm the appointment and they usually do, 48 hours before the appointment. So they can just stuff the payment up their *****.
I am relieved the editor got back to me and will start working on my book tomorrow. I was really starting to think she took off with my money. Now I can relax a little bit, least until the edits come in, LOL
midnightdemons7 
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