Tag: chronic illness

just stay

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders, suicide

Just stay

This saying “just stay” has been kicking around the suicide prevention circles I have run across. Some days it helps me to focus on staying here. Other days, I want to scream why, I don’t deserve to be here. Today I am feeling a little hopeful because my psych sent me a message and it really made me feel like someone really cares about me. I am taking that with me so that I can do this Herculean project I want to do.

Last year when I was thinking of something to do about writing my book, I thought of writing a baseball history book about what teams were called before what they are currently. Like the Red Sox had many names before being called the Sox. If you look at the World Series, they are listed as Americans or red stockings. The Yankees were called the Orioles before they were the Yankees. I find this so interesting and seeing as there isn’t a book about it, I want to write it. One of my favorite authors, SE Hinton, always says “write what you want to read.” I always wanted to learn about the history of baseball teams so I want to write it. I am not sure I will have to go to Cooperstown to get the information I need but if I do have to go there, I will. I am not sure how I will finance it but I am sure there is a will there is a way.

Yesterday, I had therapy and it was a disaster. We talked about frustrated needs that Shneidman says contributes to suicide. She didn’t understand what these needs meant to me to understand why I am suicidal. She wants me to write them and then write the things that get in the way. That was going on and then the voices got unbearable. I asked her if she felt I was meaningless. At first she was like why am I thinking that. When I told her the voices were saying this and I needed her to tell me they were wrong she then said that I was not meaningless so that reality testing happened. Then she asked more about the voices and I said that I had lowered my dose. She flipped out in a very concerned way. She wants me to talk to my psychopharm about doing something to help the voices go down as this is a serious matter. I did send a message to the psychopharm but have not heard back from her. I also sent a message to my uro and she hasn’t responded either. I am going to have to drop a urine sample next week when I am back at the hospital.

I am coming down with a cold. The virus has been hanging around the house as my mother and sisters have been sick. I am treating it with rest, fluids, and vitamin D. I find that vitamin D helps respiratory and cold infections better than anything. There was a study I was involved in and D actually helps the cytokines fight infection. But the trick is you have to be out of deficiency in order for the D to work. Find out if you are deficient, get stable on D and you will be able to fight getting the cold better. I find that if I take 10,000 IUs for a few days, my cold symptoms go away faster. So instead of being sick 10-14 days, I am sick maybe 4-5 days. This works for me. It might not work for someone else but I am just throwing it out there. The cytokine is Hcap18. There have been a lot of studies with this and asthma. A Google search will help you understand this if you don’t believe me.

I made a cup of English tea. It is by Twining called Everyday Tea. I got it from an English friend I know on Twitter. The tea is really English as it is from the UK. I love it as it is a full bodied tea and is strong. It is really good especially on cold New England days like today. It is 14 (-10C) degrees out. Hope it helps this cold that I have. It is cold in my room because I have the window open. It is 64 (17C) degrees in my room. I love the cold and this temp suits me. I just put on a sweatshirt on top of my long sleeve shirt. My ankle is really hurting today. I have had to take gabapentin and extra breakthrough meds to try and quiet it. It feels like I am being stabbed and the pain is right through the joint making me feel suicidal. I want to shave and shower but it doesn’t look like that is going to happen today.

so tired of the shore

by Midnight Demon, posted in blogging, Chronic pain, chronic physical pain, CRPS, depression, mood disorders, suicide

So tired of the shore

I had a meeting with my psychopharm today. We went over the psychache psychometrics. She assessed my suicidality. She didn’t like that I am hearing commanding voices and my suicidal level was high. I told her this was my norm. She said if that changes to get in touch with her immediately. I told her I would.

I sent a message to my therapist last night and haven’t gotten a response. The voices are telling me that she thinks I am meaningless and don’t trust her. I should end seeing her. I am still feeling meaningless. The voices are really loud today and I am having trouble concentrating. Tomorrow I see the therapist and I am supposed to bring Shneidman’s needs with me. I thought of just bringing a print out of my blog on the subject but then I thought bringing the book might be better as it lists a better definition of the words than I could interpret.

Since before my appointment with my psychopharm, my ankle had started to act up. I took a pain med before leaving the house. Now my pain is beyond tolerable. I can’t take my normal stuff because I have an early appointment with the therapist tomorrow. I have to leave by 1030. I just hope that I remember to bring Shneidman’s book with me. I meant to put it in my bag today but I forgot it on my bed. I am glad I took a shower this morning (probably what set off my ankle) so I won’t have to tomorrow.

The voices have been really loud today. Last night they were obnoxious. I sent a message to the therapist but haven’t had a response. They are telling me I should kill myself, though they are not being too clear on how to do it. One is telling to do it this way and the other is just like take this bottle of pills. I am glad I don’t have those bottles near me. I want them to shut up but I know the only way they really will is by killing myself. I can’t put them on mute as they don’t have a mute button. I have five voices right now, 3 that are bad and 2 that are my normal ones. Sometimes there are six. I am glad the 6th one doesn’t come along too often. There is so much noise going on. I told the psychopharm I would only be open to taking trilafon. It is the only med that works when I need it. I don’t want to go on something else or increase the dose I am taking now. I don’t want side effects. It is bad enough that I am dealing with dry mouth from the nortriptyline and the bladder spasm medication. I won’t take that medicine tomorrow because I want to see if it is making the dry mouth worse. I hate dry mouth. I have to make sure I carry cough drops or hard candy with me at all times now.

feeling grumpy and hopeless

by Midnight Demon, posted in blogging, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

Feeling grumpy and hopeless

Monday I saw the concussion doc. I am doing better but he still wants me to go to PT. I was supposed to start Friday but this urine infection is giving me bladder pains and cramps. I just don’t want to do nothing. After the appointment I saw my therapist who let me go after 15 mins of being there. I was so uncomfortable with my bladder that sitting was hard. I wasn’t talkative so she just let me leave. I have mixed feelings about it. I then canceled our appointment for tomorrow. I just cancelled all the appointments I had for the rest of the week. I just feel so miserable and depressed. I don’t want to do a goddamn thing. Yesterday was a complete blur. I didn’t sleep Monday night or kept waking up so I think I slept all day. I know I didn’t eat anything except M&Ms peanut candy and Ensure. I think I just left my room to use the bathroom and that was it.

I woke up in miserable mood. The urine culture came back with some bugs in it. Now I am just waiting to see if the doc wants to treat it or not. I am still having bladder pains. I had called yesterday but they said I had to wait till today for the culture to come back. I thought my depression was getting better but now I feel so much worse. Next week when I see the psychopharm I am going to ask her to see if increasing the duloxetine would be good. The nortriptyline isn’t helping my mood as I am on a low dose but it is helping the pain a bit. My neurologist gave me more than a week’s supply of a muscle relaxant. It is working as I am no longer getting spasms in my feet. They would come on while I was in the shower and omg I thought I was going to die just standing there while my feet spazzed out on me.

Right now I don’t have an appointment with my therapist. I responded to her message but haven’t heard anything yet. I got a few appointments next week. I see the behavioral psychologist and then PT. I also see the psychopharm. I feel so blah and overwhelmed with all these appointments.

I am fricken livid at my mother. I was in the bathroom cathing to pee and she just barges in to throw something in the hamper. WTF she couldn’t wait five fucking minutes??? I am so damn mad that she does this to me all the time. I know I need to tell her to stop but it is so hard talking to her because she doesn’t fucking hear what you tell her half the time and need to repeat it several times for her to get it. Then she thinks about what you say and she goes on a different tangent. Drives me fucking nuts. I want to hit the lottery so I can have my own apartment. I will hire a cleaning lady so I don’t have to worry about dust or the bathroom being dirty.

I have been fighting the urge to nap the past two hours. I am just so damn tired. I woke up three times to pee during the night. I try not to drink but the meds make my mouth dry. I got to switch back to Powerade as Gatorade is like drinking water. Soon as I start drinking, I just want more and more and before I realize it, the bottle is gone. Then I have to stay up to wait for it to go to my kidneys so I can empty my bladder for the night. I think nights of sleeping all night are over. There is like this internal 2-3 AM alarm clock that goes off saying I got to pee. It sucks. And once I go downstairs, do my business, then go back to my room, I am awake for a couple of hours.

I don’t plan on doing anything the next few days. I might get my haircut but that will be all. I just have no motivation to do a damn thing. I just want to sleep but the payback is being up all night. I haven’t eaten today and I don’t think I am going to. I haven’t even had an Ensure. I just had a cold brew and a cup of tea. I made the tea perfect. I love when I do that. It is so good. Wind is picking up. I got an alert that an advisory is in effect. Great. Hope it doesn’t keep me up.

Ocean 2

by Midnight Demon, posted in blogging, Chronic pain, chronic physical pain, CRPS, depression, gender dysphoria, mood disorders, transgender

Ocean

This is a new song by Lady Antebellum called Ocean. It is such a good song. I cannot wait for their new album to be out as I know it is going to be kickass as every single that has come out has been superb. I love this group so much and I am SOO happy they got back together.

I saw the uro. The cath came out. She wanted me to find some new catheters but I didn’t like the selection the nurse brought in so I will stick with what I got. I probably could do with a longer one but as long as this one is doing the job, that is all I care about. After the appointment I was so drained. I went to Whole Foods for some Indian but they didn’t have any. So I just had some Chinese food that they had. The rice was good. I also had some shredded beef that was amazing. It wasn’t part of the Chinese selection but in the Spanish section. I love that they have different varieties of food to choose from. Now I am back on a timer/schedule for my bladder. The uro wanted to know what the neurosurgeon had said and I told her he thinks I might have a tethered spinal cord and I think surgery is going to happen. She said she would redo the urodynamic testing two months later to see if there have been any changes made to stop progression of the bladder problems. I told her that he wanted a family member and she said that seems to indicate he is thinking surgery. I agreed with her. I feel so screwed. I really didn’t want to have surgery next year on my back but seems like it is going to happen.

My mother and baby sister is sick. Hope I don’t get what they got because there are some nasty viruses out there. My middle sister was the first to get sick and I think she spread it. She will deny it though. I got the flu shot so hopefully whatever my sister and mother have, it isn’t that. I know my mother did not get a flu shot.

I think I am recovered from the horrible depression that has plagued me for most of this year. I don’t feel like that black cloud is holding me so tight anymore. I am not saying that it isn’t there. It is. I just don’t feel its presence as strong as I did. I am back to my baseline depression, which I guess is a good thing. I didn’t think I was ever going to feel like this again.

I forgot to weigh myself this morning. I did when I came home and I am 3 pounds less than I was the last time I weighed myself. I had gained like 4 pounds now lost 3. I will check it tomorrow but I don’t think it will be a big difference. I knew I had lost some weight because my PJs were starting to get loose and I have an elastic waistband! I might be a size smaller. I had just bought a bunch of new PJs in size XL. I do not want to buy new ones. They can slide off me, I don’t care. I ate today for the first time in what feels like days. I wasn’t hungry but I just made myself eat something. I still have no appetite. I don’t know if it is because of the depression or meds or what. With the nortriptyline and gabapentin, my appetite should be off the scale but it isn’t.

I love my uro who is always courteous and mindful about me being a FTM. She explained it perfectly to a fellow nurse what my situation was. I am so glad the staff are always nice about it. I really lucked out. One of the trans women I follow on Twitter just posted as this is the decade she is going to be her to her full being. It will be similar for me. I am out and on HRT. I am transitioning. If I have to have back surgery this year I hope I can also have top surgery. My only fear would be spread of CRPS. I don’t know what it will be like or if the surgeon knows about CRPS and removing the breasts. I know that I cannot survive another year with these things on my chest. They are depressing me so much especially as they are getting hairy with the hormones. It is so distressing. Sets off the dysphoria so bad. I hate being in the wrong body.