what a fucking day

What a fucking day

I had painsomnia again last night. Pain was all over the place on my foot and ankle. And so many different types of pain. I was hesitant to take my breakthrough med because I am running low on them until I see my pain doc in two weeks. If the ass had prescribed me more than one per day, I would be okay but I sometimes need a second one during the second half of the day as well. Kind of dumb to prescribe a breakthrough med when you take two extended release pills a day. Wouldn’t it make sense to prescribe 2 a day as well?? So I got to be picky about my pain levels. I know during a flare, any med is useless. It is just a matter of waiting it out. I didn’t fall asleep till around 4 am.

I woke up around 1330. I go downstairs for something to eat. I made a fried egg. I used up what was left of my oatmeal bread. I cleaned up and dropped my fork. I squatted to pick it up and my ankle felt like it was going to fucking snap. Shit that wasn’t good. Now it hurt bad. Then when I went upstairs and as I walked through a door way to the stairs, banged my elbow pretty hard. I got a nice bruise that goes up my arm. That is going to look pretty tomorrow.

I go upstairs and check the usual social media sites. My friend posted that he got a Starbucks drink. It was now 1530 in the afternoon. I usually don’t have coffee after 1500 but I slept late and said fuck it. I got off the bed and as I was walking out, I turned to see if I had put a powerade on my nightstand and nearly lost my balance. WTF. My balance is getting worse and it always seems to happen when I am pivoting or turning my foot or body. I just don’t have a sense anymore or something. It is upsetting me and I don’t know what to do about it. Any one of my meds could be responsible, including the big dose of Neurontin I took last night to try and shut up my pain.

I made my coffee. I made it too sweet. The creamer that has sugar in it I am not liking anymore. I think I am going to go back to just half and half and then put my own sugar in the cup. I put it in a regular coffee cup. I had to drink it kind of fast as it was cooling off. I hate that cups don’t hold warmth. If I had used my stainless steel mug, it would have stayed warm. I just didn’t want 20 oz of coffee. I knew I wouldn’t drink it all.

I told my mother after the balance thing that I was going to stay in my room. I got up there and wanted to put another cold pack on my bruise. I figured I would take a few out so I can use them whenever. I had bought a case of them (I have no idea why, impulse buy while I was in the hospital last year). One of the bags that I tossed on my bed was broken and so pellets were now on my bed. Fucking great day this has been. I got the Dirt Devil out and vacuumed the stuff off my bed and then did some around my bed. I haven’t vacuumed my room in quite some time. My back was not happy with it. The thing was making some kind of rattling noise so I emptied the collection container. The filter was full of dust. I did what I could to take the dust off but it definitely needs to be replaced. I got them off Amazon and will get them tomorrow when I get paid. I wanted to get some Arm & Hammer pods for the washer but you had to have so much money from Amazon buyers and I didn’t. great. I took them off my cart. I think I will try another seller as my mother has one bottle of detergent left and we kind of need the high efficiency kind for the washer, which was what I was trying to buy.

I watched some of the game and listened to it. Sale was awesome and finally got some run support. We won 5-0. I am glad the game was over before the rain hit. It is raining now. Supposed to have thunderstorms tonight but not sure if it will be in my area. Everything is quiet now so who knows.

Should be a warning for changing sheets when you have chronic pain

Should be a warning for changing sheets when you have chronic pain

I literally spent the day changing my bed. I started by washing my fleece Red Sox blanket. It is more of a throw but it covers me well and is nice and cozy. While it was in the washer, I had breakfast, made coffee, and then had lunch. My new washer takes like an hour or more for one load. When it was done, finally, I put it in the dryer and went back to my room.

I took off the rest of my office. I rested for a bit before taking the sheets off. After I took the sheets off, my back was hurting so I rested so more. I thought after a few minutes, it would calm down, but it didn’t. My foot started acting up. I took my breakthrough med. I rested for a bit to let the meds work. I had my sheets ready to go as I have two sets. I put on the fitted sheet and my back again went berserk. This was going to take a while. I could feel that this back was just going to continue to act up.

When it settled down some, I put on the sheet, and blanket. Then I put some of my office on my bed and snapped a pic. I posted it and then rested for a bit. My foot flared again. Nothing was going to help the flare. Even now, hours later, I am still hurting. My mother was making dinner. I wanted something sweet so went downstairs for some ice cream. I wanted cake but we didn’t have any. The dryer was still going with my blanket. I put the sheets in the washer. When I finished with the ice cream, I took the blanket and went back to my room.

I put the blanket on and then snapped another pic to post. A few friends commented that I put it on “wrong” and that I had to put it the other way immediately. I was like whatever. I rested some more, or tried to. I was so damn tired. I wanted a damn nap but I didn’t want to sleep. Then my mother called saying she needed help with dinner. Fuck. Seriously? I went downstairs to see what she needed. My back was ready to divorce me. She wanted me to make the mashed potatoes. I said okay. I love making mashed potatoes. Dinner was pretty much done except for this dish. When I was done, I got the plates and utensils. I served my mother the potatoes and handed her the chicken cutlets she made. I got my plate when my mother said to make a plate for my brother in law. Ok. I grabbed another plate and started making a plate for me and my brother in law. Then she wanted me to bring it downstairs. NOPE. Not happening. My mother took her sugar and it was low. I have no idea if she gave herself insulin or not as I wasn’t paying attention. After she ate, her sugar was still low so I got her some juice. She said half a glass and that is what I got her. She said it was too much juice. Just fucking drink it. Fuck!! I started putting things away as she wasn’t feeling well. Then she went into the TV room.

I put the food away and some things in the sink. Then I went upstairs. I needed to rest. I got to my room and changed the damn blanket before I got in bed. Why, I don’t know. I took a pic and sent it to my friends that said it was “wrong”.

My back and ankle is about to sue me for divorce. I HATE changing sheets with a passion. I do it infrequently because it causes me so much damn pain. I will probably be sore tomorrow. The game is playing now but I don’t care. I have the country radio on and I just feel like listening to that. I can’t believe that it is almost the all star break and I am already starting to lose interest. I think it is more to do with my mood disorder than the sport. The team has been doing fairly well, even though they aren’t playing their best. They had an up and down game last night but pulled out a win. It was a good game but I couldn’t stand to turn on the radio and I was so upset. I was just in too much pain. I was just getting updates via Twitter or facebook.

I took my meds so I think I am going to read some Harry Potter and call it a night. I think I earned it. Just hope my pain doesn’t get worse. That will not be good.

What I started writing yesterday and stuff I did today

What I started writing yesterday and stuff I did today

So this is what I wrote yesterday:

I am so flipping enraged. Just came from seeing my pcp. He was interested in how I was doing with the med change. Jerk said he was extremely skeptical about opioids helping me at all. Well take this chickenshit, my pain is reduced 50% aside from flares, which nothing seems to help. He was glad he was wrong. But can you imagine the big “I told you so” if I got no relief? I can’t believe the ignorance. Totally dumbfounded and hurt I would left to deal with excruciating pain and nothing to treat it with when there is something to treat it. So anyone who says opioids don’t work for CRPS, THEY ARE FULL OF CRAP!! So I then tell him my back has been acting up due to weather changes. My lumbar spine and sacrum do not want to move. Asked if taking ibuprofen was ok and he says it has risks of heart problems and hypertension. But mostly stomach issues. I should use it sparingly. Why the fuck is this over the counter if it causes so many problems? And doctors prescribe it like candy or more potent NSAIDs like naproxen or diclofenac?? Idiot. I just rolled my eyes. I cannot believe this idiot is practicing medicine at a world class hospital.

Today I find out that he is worried about my sodium levels as they dropped again since the last time I had them checked. He is going to talk to my psychiatrist and has ordered blood and urine tests to rule out what is causing my blood sodium to drop other than medication. I wrote back to him and asked what the tests were (I am a lab geek, after all) and if the PCOS I have might be affecting my pituitary, thus messing up my blood levels. I don’t think I will get an answer tonight as I thought of this around 1900. He did tell me that if I felt ill to go to the urgent care.

I spent most of the day clearing off my bed so I can change my bed sheets. I had to do it in increments because my back kept flaring if I stood longer than 10-15 minutes. Then I couldn’t find my reacher on my bed so finally cleared off nearly everything except my office essentials like my journal, laptop, and book that I am reading. I made pancakes this morning and then had buffalo wings for dinner. I was so sleepy after dinner that I had to lay down. I was hoping to sleep but I couldn’t.

Tomorrow, I will be able to change my sheets. I plan on washing them and my blanket. I have another set of blankets that I will put on. They won’t be as warm as the Red Sox fleece I am using now. I think I am going to put the hospital blanket on and then the Red Sox. That should keep me warm and if I am too warm, I can always take it off. I have to keep my leg warm because the AC might make my foot cold. Plus I get cold and like to get cozy under the blankets at night.

I was feeling really down last night. Pain was elevated and so was my suicidality. I wrote a blog. When I finished it, I sent it off to a couple of suicidologists, including the president of the American Association of Suicidology because something she posted on Twitter bothered me and I had written about it. She tweeted me in the morning and we had a discussion but I could tell she wasn’t getting what I was trying to say. It amazes me that these people want to prevent suicide yet belittle the thoughts of those who actually live with chronic suicide ideation. She had written a study that had showed more than 132 people are affected per suicide. It was dispel the thoughts that Dr. Shneidman had that at least six people were affected. He said this but never studied it. No one knows where he got this number and he is deceased so we will never know. Her study was important. But what the bereaved suicide loss persons don’t realize is that saying loved ones will be hurt and others will be affected, some how guilt trips them into staying when they do not wish to live anymore. I was trying to explain this and we weren’t getting anywhere. Depression already caused excessive amounts of guilt. Add this information and it is overwhelming, which is what I was trying to get at but obviously wasn’t explaining right. She is a very intelligent person but I really think that lived experienced people and others who think of ending their lives might be too painful for her to deal with and so gets offended. I have seen it happen to me one too many times. Yes, it does make you stop and think of who you are hurting when you are thinking of taking your life. But then you (the suicidal person) have to wonder, is my suffering greater than those I love? And if this was a physical, terminal illness like cancer, would they still feel the same?

It just bothers me so much that people who are already suffering from huge amounts of pain, physically and mentally, still go on with their lives because they basically feel trapped. I know I do. I feel trapped by not want to cause pain to my family and friends with my death and the pain I already have that I was so desperately to end. It is tearing me apart some days, especially when the dawn approaches and I no longer have such intense feelings of ending my life. One of the suicidologists was glad I had made it through the night. She was the only one that said that. I am sure the others would have thrown my ass in the hospital if they could. I write a lot about my feelings because I don’t have a lot of support. It is also cathartic for me to write. If I lose this, for whatever reason, I know I will die. I think I even emailed my psychiatrist last night about why am I still around? Why am I still here. And will she let me go? I was half expecting a response or a phone call. I got neither. I see her next week so I know I will talk about it, least I hope to if I am not chickenshit. She sometimes scares me because she has this way about her that when she says something, I have to listen and “follow orders”. I have never not done what she said when she says it in that tone she has. She has known me for a long time. I respect her a lot and she respects me a lot. She looks up a lot to me because I have been through so much.

Next week is going to be difficult as I have a lot going on. But right now, all I care about is changing my sheets and reading Harry Potter as well as keeping track of the Sox. Oh, almost forgot, the blog that I wrote early this morning was chosen by some paper and published on their platform. Pretty cool!

Painsomnia and Midnight Demon Friday 22 June 18

I had started a blog on my laptop to publish yesterday but my brain kept getting foggy and couldn’t focus. I knew if I forced myself to write, it would come out crappy.

Now it is after 2 am. I can’t sleep. Midnight Demon is out. Has been since 10 but had no writing urges. I’m just writing now because I felt like it. I feel suicidal. Been planning for months and now it is almost time. I’m wondering where the weeks went. I haven’t done much other than look over my will. My pension is still wherever it is with my employer. I have emailed my psych that my death is inevitable. I asked her to let me go.

Pain has been decreased by 50% since my new longer acting pain med was started last week. But it does nothing for flares. I am not in a flare. Just pain that is left over from the meds. It doesn’t take all the pain away. Nothing will do that. But this pain is what is keeping me up. That and the thoughts of ending my life. It is like a monkey on my back. It goes away for a while and then comes back full force.

It is a familiar feeling. A part of me knows it will pass. Another parts truly believes this will be the end. I am tired of fighting this. I had made my decision 3 months ago. Now the 3 months is almost up. I extended the date due to circumstances beyond my control. Next week I will check out the location. I hope it will be suitable. I am still afraid I won’t go through with it. My psych might intervene. I don’t know if I will end up back in the hospital. I told her it was useless.

My hope level has been fluctuating a lot. My friend reminded me I’ve been in rough patches before and got through them. I didn’t tell her this was it. I feel so stupid. One of the suicidologists I know that is the president of AAS did a study on the effects of a suicide. In the study she found that >132 people are affected. If that holds true, I will have ~400 or more. And that just includes my online/high school/ co workers friends. Doesn’t include my humungous family.

I feel guilty about this. Today she posted saying that it was a reminder to suicidal persons as they often feel no one care or that no one will miss them. Makes me mad. I don’t want to cause pain to others yet why should I go on in torment of my CRPS and depression? I feel it is a guilt trip. A huge one at that. I stuff those feelings when I am deeply suicidal. Then when it lowers or I look at the people I love, I wonder how could I do this to them? I am in agony over this. It is truly hurting me. Call it ambilvalence. Call it selfishness (please don’t as that is NOT what it is but i don’t know another word). I just am so conflicted as to what to do. I can’t stuff them. I want to die. I need to die. My time is coming. Question is, to be or not to be.

Things that annoyed me and other stuff

Things that annoyed me and other stuff

I woke up around 0330 in pain. Took me a while to get back to sleep. I think it was around 5 when I did. I woke up next because of my med alarm. I took them and then my bladder had to go. I went downstairs and it was already muggy. I used the bathroom and brushed my teeth. I didn’t feel like showering. I know I need one but I am just being lazy at this point. I went back up to my room and fell back to sleep. I set my alarm for noon so I wouldn’t sleep late. That was for waste as my dumbass cousin kept calling me. He must have called like four times. I let it go to voicemail. I stayed in bed until it was 1230 and then got dressed.

I went downstairs and put my shoes on when I realized I forgot my insulated cup. Oh well. I didn’t feel like going back upstairs for it. I grabbed by bag and then went out. My cousin was pulling up and my mother was getting out of the car. I started yelling at him for calling so many times. He said my mother had bags and I needed to help my mother out. What was wrong with him?? He has no problems with his legs. He is just a lazy fuck that refuses to go up one friggen flight of stairs. I walked away after he said that I should help my mother and he asked where I was going. Fuck you. I put Taylor Swift on my headphones and went to the bus stop. Bus came because I got the bus driver that likes gas. She drives fast and you better sit or brace yourself once you get on the bus or you’ll go flying.

I ordered my Starbucks. I wanted a cheese Danish but the store was out of them. I had a coffee cake instead. After I ate, I wrote in my journal for a bit, but was not too focused. My thoughts were all over the place, making it hard to write them down. I used the restroom and then left for my therapy appt.

I got there and he was running late. I had so much to talk about. I told him about my cousin and what he said. Then started talking about how my father has been on my mind a lot lately. It’s been more than two years since his death yet I can practically remember every detail of the day he died and it plays at least unexpected times. I told him how I felt about not being able to do enough for him, but knew also, there was not much I could do to save a dying man. Even if I altered the DNR to get him fluids or other care, it wouldn’t benefit him. It might actually cause him more pain. We talked about how I felt about him and the abuse he did to me on so many levels. I nearly broke down at least three times but didn’t. I somehow kept the tears back. I don’t know how to process this. It sucks big time. He let me talk. He didn’t say too much. Told him how my uncle died, my father’s brother. I didn’t find out the truth about how he died until a few years ago, before my father died. I forgot who told me. It made sense to me though I didn’t say anything more about it to anyone. I was five when he died and really don’t remember him that well.

My therapist had to change our time for next week. So I have a double header next week. PT in the morning, therapy in the afternoon. Fun! I should be a fucking wreck physically. My mother called after therapy. I had just missed her call by a few minutes as my phone ringer was off. I called her back and she asked when I was going home. I told her I was on my way but it could be an hour or so depending on the bus. She said when I got home to tell my niece to come upstairs. I said okay.

The bus was late and I think something was wrong with the back doors as the driver had to get out of the bus to fix it or do something to it. I was hoping things went okay as we were a few stops away from where I was to get off. It would be a LONG walk if the bus was broken down. But whatever he did fixed the problem and I got off at my stop. I went to Walgreens to get some protein bars but the price went up. It was 2 for $3. Now it was 2 for $4. I didn’t have the other dollar and I wasn’t going to pay $2.49 for one. My friend told me I can sometimes get coupons for these things so I will check out the website she recommended.

I had dinner and then went up to my room to change. I was so tired. I was hungry again but thirsty too so I drank some powerade. I wanted to make some fried eggs and toast. That has been my kick the past few weeks. I took a shower instead. BAD MOVE. My back protested violently. I am still hurting. I had to shave my underarms so the extra standing just annoyed my back. My trimmer ran out of juice and had to be charged so it was the old fashioned way of razor and shaving cream. It took longer but was worth it. I then washed off in the shower until my back had enough. I think it was the fastest shower I ever took. Getting into my PJs was hard. My feet did not want to go through the pant legs. I was getting so annoyed. My back was ready to kill me. My legs are also hurting. My left thigh is beyond sore. I have one appointment tomorrow in the afternoon to see my PCP and then 4 days off of doing NOTHING. Least I hope so. My legs are going to need to rest.