transition appt and other things

Transition appt and other things

I’ve had an early day as I woke up around 5. I decided to stay up as I needed to get up at 7 to shower and get ready to leave the house the latest at 815. I played with my phone, talking to a fellow tweety buddy about stuff. I had woken up with spaghetti arms and she never heard of the term. I explained that it was a side effect of my antipsychotic medication. It doesn’t happen often but it does happen now and then. Around 6 I decided to heat up a burrito and then shower. For some reason, my heating method didn’t work as well as before as parts of the burrito were cold. I might have to use the second side at 40 seconds rather than 30. I had a glass of juice and then hit the shower.

By the time I was done, I was wiped out. I had about 45 minutes before I had to get dressed so I decided to risk laying down. I set my alarm and when it went off, I didn’t want to get up. I laid in bed for another ten minutes before getting dressed and leaving the house. It was sunny out and a little chilly but it would warm up a little by the time I got home. I just caught the bus to the station. While I was on my way, my friend texted me saying that she couldn’t meet me because something came up. She felt bad as she was looking forward to seeing me. I told her not to worry. I will be having frequent trips to the health center so there will be other opportunities.

The appt went well. I asked him what to do with the one female hormone I am taking to stop my periods. He said once I start testosterone, I can switch to a progesterone only pill until the T builds up in my system to adequately stop my menses. I might have a period or two while adjusting. He needs to talk to my psychiatrist and therapist and then I think by next appt, I could be ready to go for T shots. It will be weekly and could take as long as 6 months to show changes because of my age. I asked about top surgery and he said that can be discussed once I have begun changing. He asked if I wanted bottom surgery and I said no due to my nerve injury. I still don’t know how T is going to affect my sex drive or how it is going to be. I am kind of worried because when I was sexually active (some 15+ yrs ago), after my nerve injury it was very painful and I hated it. Since I have been out of that crummy relationship, I have not been with anyone. It’s so damn hard because even my urine is fucked up some days. Like the other day it was like all I did was pee. Then the next day, I hardly peed at all, no matter how much I drank. It’s so frustrating.

With the length of this transition, I am kind of thinking of how my plan is going to be and what to do about it. I haven’t put anything in motion, mostly because I haven’t been up during business hours to place phone calls. I emailed my psychiatrist in a kind of panic email about all of this as I was in a pain flare and basically going nuts like I do. I just get so overwhelmed with anxiety during a flare, like the world is ending kind of feeling. I also become more suicidal as I want to escape the pain. I don’t want to live anymore if I am supposed to spend the rest of my life in horrific pain every single day. I don’t know if it will be worthwhile going through the transition or to start it. I don’t know what to do. I keep thinking it will pass and I can manage the pain again, but then there are days where I am set in my ways and I want to go through with it. I still have time as it will take some time to organize things. I have no deep rush. I do know it will be sometime this year. I just don’t know when, specifically.

at a complete loss

At a complete loss

I had requested my medical records from the pain clinic to see what they said about me. Mostly I wanted to see if they got things right and then see what else the fellow wrote. Basically, they don’t want to treat me because of excuse after excuse in opioid therapy. They really didn’t offer much in ways of treatment, other than to continue with PT (don’t see that happening if my pain is not controlled!)

I feel defeated. I see my psychiatrist tomorrow and I will tell her I plan on seeing an assisted suicide doctor. I don’t see what choice I have. I do have my second appt with the pain clinic but at this point, why bother? They aren’t going to do anything to help me. It says as much in their notes. I am not idiot.

I got my medical insurance invoice. The premium is now over $200 I have to pay every month. Just lovely. I knew it would be as my medical (not including vision and dental) is $198. Unfortunately, I need this in order to pay for my prescriptions.

I know my family and friends and bloggers will miss me. I wish I could stay. I just can’t bear the pain anymore. I was up and down stairs all day because we had the plumbers here to fix the shower. I also had to tell my mother what they were saying because she is hard of hearing. Even though I took a nap, I feel like shit. My ankle and foot are so damn angry at me because I took a shower. I had to. I haven’t had one all week! This is getting ridiculous. I was used to shower every other day. Now it’s maybe twice a week. Yeah, my quality of life is so good. Maybe I should cash in my pension from the hospital so my family won’t have to worry about funeral expenses. I know how hard it was when my father passed. We had a whopping few hundred dollar inheritance after all was said and done. Think I bought groceries with mine. I live the life. HAHA.

I know my psychiatrist is going to put up a fight with me. I am not looking forward to it. I hate arguing with her. But she is for life. She has done her best to keep me alive all these years. Just wish other doctors were as dedicated. She has been my biggest supporter, even when I thought there was nothing left for me do, as I have many times before. This time feels different. I don’t know when. I think I shall start the process of getting my pension and once I have it, pay off all my debts then give the remainder to my sister to “hold” for me. I know what a pain it will be to access my accounts once I am gone. It was hell just to write a check when my father passed.

Pity Party

Pity Party

I rarely have pity parties. But tonight, something embarrassing happened to me that has been happening for a while and it just hit the wrong nerve. It depressed me because despite recovering from cauda equina syndrome (CES), not once but twice, I was ultimately disabled because of CRPS and chronic pain. Whether CES had a hand in it, I don’t know. It is doubtful as my last surgery was four years before my injury, a sprained ankle that was caused by intense spasms of my foot and ankle. That surgery was higher up the spine than my first surgery so I am not sure it affected my ankle and foot. There are a lot of what ifs, and I was pondering them today. Then the embarrassing incident happened and it hit me in the gut.

I can’t do much over what I have been dealt. I try to move on as best I can despite horrible pain. I am grateful my hands and upper extremities are not affected by pain. I don’t know what I would do if I couldn’t write anymore. I know there are speech to text things but I like the feel of pen on paper or the keys of the keyboard. I have my outlet with my blog to talk about how crappy the pain is and how it brings on my suicidality.

I was talking to my voices today, as I often do. We were discussing the use of testosterone and the effects of what they would do to me. That is if I don’t kill myself when I plan on it, which is soon. It all depends on how next week goes. I am nervous about it. I have even thought about assisted suicide, which may mean leaving the state and going to Oregon where it is legal there. It might take me a few months to save up for it, but what the hell. I can’t seem to get it right on my own. If a doc can prescribe me something to end it, that will help me. I don’t want to be in this level of pain or worse as I get older. It’s bad enough that just making my bed hurts. Making breakfast should not cause pain and I’m not talking something fancy, just making scrambled eggs and toast is a chore. I wanted to go to Starbucks today but my back was too painful because of the shitty weather, which is going to continue until tomorrow afternoon/evening. I’ll probably be in pain the rest of the week, more than my usual pain.

Right now my foot feels like it is being crushed. I’ve had to take my strong pain pill to quiet it down. That was an hour ago and I am still hurting. I am so frustrated that I have to wait for meds to work. Sometimes it’s 45 minutes. Others, up to two hours. I play with the Neurontin dose because I don’t want to be foggy the next day. I’ll take anywhere from 600 mg to 1200 mg a night. Some nights I don’t need it. It all depends. But when I flare, all the guns need firing. Pain today has been mostly in my foot. But my ankle hurt briefly. It piggybacks going up and down, from foot to ankle and back again. Sometimes it is the same pain, sometimes it’s a different pain in the different area of my foot or ankle. I never know what kind of pain I will get. The bone pain is the worse because that is harder to treat. It can be my malleolus or the metatarsals. And is always severe, like can’t move at all severe. I wish there was just one pill I could take for all of the CRPS pain. But there isn’t. And then there is an MGH resident that says opioids don’t work on pain at all. I like him to have CRPS. The meds might not take away my pain 100% but it brings it to a bearable level and that is all I need. Lately my pain has been rampant, a 7 or higher. Used to be a 6, now a 7 is my new “normal”. Before then, it was a 3. That was at least two years ago, maybe? What happens when my pain is a 10 every day? I probably won’t be alive to know. I hope so, anyway.

surviving depression 23 June 2006

June 23, 2006

I know what you are going through. Sometimes I think that everyone would be better off without me. The only thing that is keeping me alive these days is my word to my therapist that I won’t go through with my thoughts. The pain of living is just too much to bare right now. My therapist often asks me how I get through this. There is a quote that I keep telling her that I got from one of Kay Redfield Jamison’s book, “Only one option left, to suffer”. She is my inspiration as she has bipolar disorder, tried to die by suicide, and is one of the leading researchers/teachers of the disorder. I know it doesn’t make sense to suffer all the time but millions of people out there do it everyday. We few that are in this group do it every day, though it is most difficult and we come from different backgrounds and sections of the world. I know it sucks, but the trick is to realize when we feel this way, it is NOT our true selves, it is the disorder that is talking. I know we all feel like scum of the earth for no reason other than for being allowed to breathe, to be something called alive that we wish we didn’t have to be. One reason why I have read so much about depression and there are a lot of good books out there, is that you have to know the disorder, understand it, then you can know what to do, sometimes when it isn’t hitting you on the head with a 60 lb hammer. Sometimes knowing the demons is better than not knowing them. I know that it isn’t always easy when our physical bodies wreck our lives and we are no longer feel apart of the human race because our b&b are not functioning and we have physical pain that is driving us insane. But things aren’t always going to be this way. One of the books that I had read said that suicide is complete in 10 minutes and if you wait out those ten mins, you will survive. The same thing goes for depression. Though instead of 10 mins, it’s more like 10 days or more. But it doesn’t last. Eventually it lifts, and we return to “normal” functioning until the next episode. The HARDEST part of this fucking disorder is that we forget that we have survived the worse of it. Every time we are stuck in an episode, we think it is for the first time, that we are NEVER going to feel better, ever. I am telling you that you are. No matter how hopeless you feel right now, tomorrow might be a better day and if it is not, least you survived today. Worry about tomorrow, tomorrow I’ll be here for you. Count on it.

About the mood stabilizers, I suffer from bipolar depression, which is a little different than major depression. I sometimes have periods where I am really hyper, don’t sleep, eat, think I am on top of the world, talk excessively, and can’t stand still. These periods don’t last too long, maybe a week or two, then I either have a period of being normal and/or crash big time. I take Trileptal for it and it has helped some with the Cymbalta. Trileptal is an anti-convulsant that is used a “mood stabilizer”. There are other drugs that are used, but you should be seen by a psychiatrist for evaluation. Most GP’s don’t have a clue about psychotropic meds and it isn’t a good idea for them to play around with it if you don’t have the diagnosis.

Fear of suicide (revision to blog of 6 Feb 2013)

Fear of suicide.

This statement can be taken one of two ways. The first is that some people are afraid to talk about suicide for fear of sparking ideation or thinking about suicide. The second is that when
someone knows you are feeling low and have attempted before, they are afraid of losing that person and react in ways that may or may not help that person. Suicide attempters are at higher risk than non-attempters.

I’ll talk about the second interpretation first. I have a friend who is having me motivate her into
writing by having me contact her every day for six weeks. What sparked this was, she read my blog about my recent near-suicide attempt. Now her ulterior motive is to keep me alive the only way she can think of, by having me write to her every day. In return, she has to write at least two pages a day for her own well-being. She needs my help to pursue her writing, which is important to her more than anything. We are also guarding a human connection that is valuable to us. My writing keeps me alive, and because she doesn’t want to let me down, that helps her to write. She has this idea that people need human connection in order to stay connected to what they truly need to do, even if that connection is between polar opposites. She is bubbly and athletic, a motivational speaker, while I’m someone who is in chronic pain and disabled because of it.

I have to say that since I have been writing, I have been in better space. I would not say that I feel more connected, but I don’t want to let her down, so I try and write a little each day. Our rules are to email each other when we are done, and we are allowed our birthdays and Christmas off. For days where it is not possible for me to write because of whatever reason, we have given each other three passes on writing. Sometimes, because my pain or sleep deprivation is intolerable I find that it can help me be creative and write about things. I don’t have a censor when I write. Whatever I think at that moment, I write it out. Sometimes I find that writing it on paper helps more than writing in a word document.

I sometimes feel exposed because I am bearing my soul to this person I met through a friend on Facebook. We both belong to the same organization for suicide prevention. I am guessing that because she thinks of me as a sibling, and she did lose her sister to suicide many years ago, she does not want me to end up that way.

I write often because it is an outlet for me and my emotions. I am anonymous when it comes to my blog but not too much, as I pass these blogs on to my personal Facebook site, where my family members can have access to it if they were inclined to read it. Most often they do not because they are not online as much as my other friends are. I do not tell my family what I am doing. It would be heartbreaking and awkward for them to read what I write and then get asked at the dinner table what I meant by something I wrote. To be honest, half the stuff I write about, I forget. It’s an outlet like no other.

I am not going to lie and pretend that I don’t think about killing myself every day. It is a constant struggle, and I think that I worry a lot of my close friends who actually get to know me or who read my blogs about my struggles. But I think the reason why my blog has been so successful is because people can relate to what I write.

As far as the fear that talking about suicide can bring about a suicidal crisis, that is a common myth. Talking about suicide can actually prevent one, but some people are just not comfortable with the subject, and so they will say stuff that they think the person who is miserable wants to hear, like. “You have your life ahead of you,” “Don’t be so down, things could be worse,” or my favorite “You have so much to live for.”

People don’t understand the pain that is involved in depression or in thinking about suicide. I have problems. Quite a few. I have mental illness and chronic physical and mental pain. Both make me want to take my life. I have been thinking about taking my life since I was 8 years old. I was in a lot of pain for some reason or another, and it never got taken care of. Today, I think that pain stems from the fact that I am really a male and not a female. I knew at a young age that I was different, and back then, there was no expressing how I truly felt. I really think that if I had gotten help sooner, this would have come to light sooner, and I wouldn’t be in this pickle today about what to do with my transition.

I’ve started a new journal. And like every other journal before it, the first thing that goes into it is my crisis response plan which is the following (taken from the Air Force Guide to Managing Suicidal Behavior-Appendices)

When thinking about suicide, I agree to do the following:

Step 1: Try to identify my thoughts and specifically what’s upsetting me
Step 2: Write out and review more reasonable responses to my suicidal thoughts
Step 3: Do things that help me feel better for at least 30 minutes (examples can include trying to sleep, playing internet games, listening to music, etc.)
Step 4: Repeat all of the above
Step 5: If thoughts continue or get specific, and I find myself preparing to do something, I will call a suicide hotline or someone that I trust sometimes hotlines aren’t so helpful but calling a friend is
Step 6: If I cannot reach the above, I will call my therapist or psychiatrist
Step 7: If I am still feeling suicidal and I don’t feel like I can control my behavior, I will go to the ER or call 911

I have found having this useful when I have been hospitalized because it provides a plan of something that they need for discharge, and I always carry my journal.