Author: Midnight Demon

A friend on twitter has this rage Wednesday every week. I usually don’t participate because nothing (other than pain) bothers me. Today I was thinking how it has been 10 years since I’ve been permanently disabled and I am still in horrific pain. And now that pain is spreading up my leg, which has made me very depressed.

I bought a TENS unit. Found out you have to have two pad plugged in not one. Well I had it on the highest setting because I didn’t know what I was doing and shocked the hell out of my calf muscles. I put it on a lower setting and had it on for a few minutes. But the damage to my left was enough to activate CRPS in my ankle/foot so now I am in agony. I took a pain med and slept for an hour before my bladder woke me up.

It took 8 years to be diagnosed and 9 years to be on adequate pain meds. I am still undertreated with my pain. I think I should be on a higher dose of pain meds but no one else agrees with me. I’ve stopped complaining because I don’t want them to stop prescribing me pain meds. I don’t have too much side effects. Constipation is a big one but I am on other meds that that cause constipation too. I take 3 meds for it. One is not really a med but a supplement. I have to stay on top of it because I’ve learned that if I don’t, I don’t go for days to week.

I didn’t have a good sleep. I was up most of the night again. Seems every other night I have insomnia. I am glad I don’t have anything planned today. I wanted to clear off my bed and change my sheets but that might be tomorrow. I am cold and tired. I just want to be under the covers. I don’t care if I sleep or not. I just want to be warm.

My mother’s sugar dropped so I had to make her lunch. I made sure she was ok before I went upstairs. Her back hurts and she was doing laundry. A good combo for sugar to drop. She is ok now. I am glad she called me.

Tonight we will be celebrating my bro in law’s birthday. Should be fun. He usually has a rum cake. It is so good. I am looking forward to it.

Pass off game

I had messaged my neuro to ask if CRPS can be in the bladder and was assured that it cannot. So I am glad that isn’t why I am in pain. The uro I messaged yesterday did say that my urine is clean. No sign of infection so I can take my pain med for the pain. I messaged my pcp and she passed me off to uro for further treatment. I just feel like it is a run around with these doctors. I am so sick of dealing with it. I have been dealing with this shit for 10 years now. I let my pcp know what the uro said and also told them my depression is bad. I didn’t tell them or my psychiatrist that I plan on going to Switzerland for assisted suicide. When I get the money to actually do it, I will.

My TENS unit came today. I haven’t opened it yet. I don’t really feel good today as I woke up with a headache. I feel run down and it is only Tues. I am making progress in clearing my bed off. I just have my “office” to get off my bed. I took most of the recycles off my bed and in my room last night. I have to bring it downstairs tomorrow for trash day. I have a lot of boxes and three bags of recycles.

I reluctantly went to the chronic pain group today. It made me sad as a member started crying over her son who was just diagnosed with colon cancer. I told them I was depressed that my pain is spreading. I didn’t get much support.

I woke up around 1330 and it is now 1600. I am ready for bed again. I am just so damn tired. I had spinach that I made. I had wanted to have it as a salad but it is a few days old and had to make it before it became bad. It was good. Hope it gives me the iron I need. I am trying to stay up but it is difficult. I don’t know why I am so tired but then again, I was up nearly 24 hrs yesterday so that may have something to do with it. I slept through most of the night, only waking up once to use the bathroom. I went back to sleep quickly. I had woken up around 10 to use the bathroom again and to take my meds. My blood pressure is better. I took it yesterday and it was 129/88. My heartrate was in the 90s but I had just come up the stairs so it takes a little while to settle down.

Therapy had given me a new skill called imagery to use. I have been using it on and off most of the time I have been up today. I just keep going to my “happy” place. It is cold today and the draft from the AC is making my room really cold. I just want to go under the blankets. My ankle has been throbbing for the third day in a row. Yesterday it was burning all day. The cold weather hasn’t helped it. Yesterday I woke up to snow. It is the end of March but spring hasn’t been around. I just want weather where I don’t have to wear a jacket, not to hot but not too cold either. Just like 60 or 70 degree weather. Preferably cloudy so I don’t have to deal with the sun. I hate dealing with sunny days. They make me depressed.

Therapy and other depressing stuff

I told my therapist I didn’t sleep and that I have been up since 0130 or so. I had to pee and I wasn’t able to get back to sleep because severe bladder pain kept me up. I had energy this morning after I had my coffee so I went to the lab to drop off a urine sample that is going to be negative as the urine was clear. But I did it just to be sure it is negative. I think I may have CRPS in my bladder. I asked my neurologist this question. I technically don’t have a urologist until I see him in two weeks.

I told her that once I get $12K, I will be going to Switzerland to end my life because the CRPS is spreading up my leg. I also told her I have vaguely thought about killing myself here. She knows I have the means. I don’t plan on telling her when I act on the feeling. She doesn’t know this. I don’t want a rescue or a hospitalization. I do want to have top surgery first before I end up killing myself, though. I told my therapist this. She gave me the imagery skill to use between now and next session. I told her I would practice it.

I just bought a TENS unit. I am going to see if that helps my pain. I don’t think it will do anything for my bladder but if it helps the CRPS, I am for it. That is all for today because I am falling asleep. Will write later if I have the energy.

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I had a relaxing Sunday. I stayed in bed for most of the day and then only got up to eat. I finished off the chili cornbread that I had made for myself. It was so good. I have been slowly clearing off my bed to change my sheets. Hoping to be done by Wed. It just takes a lot out of me.

I brushed my teeth today and took a shower before bed. While trying to wash my back I place my arm behind my back and it caused massive pain in my shoulder and bicep. I can no longer do that. I don’t know if PT would have fixed it or not. I would have loved to have at least another month of PT to help get my function back but after five months, I guess PT was done with me.

I have therapy today. I am hoping I am awake enough for it. I don’t know if I am going to do the agenda I want to do. I really just want to talk about being depressed and stuff. I don’t feel like being a professor today. I haven’t read the workbook all week because I was so busy with appointments and stuff. I was so damn tired. I still am tired. All I keep thinking about is how to get 12k just so I can end my life. It would actually be more than that as I would have to update my passport and then have to have money for a place to stay and stuff for afterwards. I don’t want the CRPS to spread up my leg but there is nothing nobody can do about it and I don’t want to amputate my leg either, though I have thought about it a million times. I have thought about assisted suicide about as much as well. I thought about going to Oregon where they have assisted suicide but you have to be a resident there for at least six months and be terminally ill. I am not considered to be terminal. I just have a chronic pain condition that is spreading up my body. It is really distressing.

On Saturday I got my haircut. I shave it all off in support of people with cancer. My mother saw me today and said that I shouldn’t give my barber his favorite dish anymore because he “chopped” my head off. I didn’t tell her that I wanted my hair this way. Or rather my head. I have no hair on it. Just a stubble. I am thinking about shaving it off so that I am bald. Might do that later today.

I am going to tell my therapist that there is no point in continuing because I plan on ending my life.  I don’t want to continue with therapy when I am not going to change my mind. No point in learning new skills. I am not going to do it now or even soon. But it will happen probably sometime this year so I am not even sure getting top surgery will be worth it. It may so I can finally be who I want to be. And who knows, that may change my mind. I will finally have the body I have always wanted.

Since yesterday afternoon, my CRPS has been on fire. My ankle and foot have been burning me. Now I am in pain. Never fails that after the burn, comes pain. Why should I continue to live this way? Why must I always be in fucking pain? No one can stop the spread of it up my leg. Who knows if it will stop there. It might affect my whole left side of my body. I can’t live with that kind of pain every single day. I have been battling this since 2010. It has been 12 years I have been in constant pain every single day. I can no longer work. I can’t even volunteer some place due to my LTD restrictions. I am so tired, exhausted of living with pain. It will be over soon. I just got to plan it and hope it works.