Tag: chronic illness

Having a Crappy Day, Literally

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

Having a Crappy Day, Literally

I woke up early this morning in pain. I took some pain meds and when I went downstairs to have my nutritious donuts, my brother in law came up with some dishes to be washed. He and my sister are renovating their kitchen and don’t have a sink to use right now. He told me my mother would be watching my niece as she didn’t have school today. Weird because they don’t have school on Monday either because of the holiday. So the kids have one long weekend. Anyways, my mother wasn’t up yet so I said I would watch her until her grandmother came and got her. While I got settled in the kitchen debating on making a burrito, my mother came downstairs and so freed me from having to babysit. HA! I knew I would be toast anyways as I took my pain meds and within an hour, I was. I didn’t sleep very good as I had weird dreams and then my mother screamed my name and scared me to death. Someone was at the door and she couldn’t go down because she hurt her other knee. So I get up and go down the two flights of stairs to someone that isn’t there. My niece had answered the door. Why the fuck she didn’t tell my mother she did is beyond me. I was so pissed I got up for nothing. So I go back up the two flights of stairs and my ankle decides it doesn’t like it so I am in pain again. I take another pain pill and go back to sleep.

I got up around noon or shortly there after. I had to go to the bathroom so I did. And then killed some time before getting dressed and catching the bus to the Square for coffee. I was planning to check out the price of chicken wings so I can make them tomorrow night or Sunday. I got to the Square and did my routine of having coffee and writing in my journal. I then went to the meat shop to check on the price of chicken wings. They only had small packages. I would need at least three or four to make the quantity I needed for the recipe and I didn’t want to spend that much on it so headed back to the bus stop to catch the bus. I then decided to go to Stop and Shop to pick up my prescription and get the rest of the ingredients needed for the recipe. Soon as I was approaching my stop to get off, it downpoured. So I didn’t want to walk in the rain as I didn’t have an umbrella. I knew it was going to rain today but thought I could beat it out. I was so close. So no chicken wings today. I will have to go tomorrow if the weather permits or if my sister or brother in law takes me. I would take either of their cars but I can’t drive them. They are big SUVs and I just don’t trust my peripheral vision to drive them.

So rather than wait in the rain for the next bus, I got off at the station to go home. I didn’t think anything was wrong. I got stuck in the down pour at the station and got pretty wet. Luckily, the bus came before I got soaked. And the bus had the AC on so it was pretty damn cold on the ride home. I just got to my house when it down poured again. I couldn’t win staying dry. Got in the house, changed and then felt like I had to go to the bathroom again. As I got up, I felt sticky and panicked. I didn’t pass any gas or anything while I was out so I was hoping it was something other than what I thought it was. I was wrong. I crapped my pants and didn’t realize it. That just made my day. On the anniversary of my CES diagnosis, I crap my pants. Just fucking wonderful. I really was pissed. I don’t know how long that crap was in my pants. I had no sensation of it until I came home. It’s possible I went while I was undressing. I don’t fucking know. I just know that it sucks. I feel ashamed of myself. I hate my therapist for keeping me here. I could die right now from embarrassment. Sure getting soaked by the rain is one thing but crapping your pants is another. I hate this condition. I should have killed myself 10 years ago so I wouldn’t have to be dealing with this today or any day.

Hurricane Joaquin

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

Hurricane Joaquin

Today has been heavy rain and flash floods every where. I am glad I didn’t venture out as I would have gotten soaked. It’s windy but not too much. During one of the breaks in the rain, my mother decided to open the back porch door. Then the heavy rain fell. Luckily, I got to the kitchen in time before it flooded. It is really humid and the house is very muggy as most of the windows are closed. I am ok in my room, but then I have the AC. I hope the rain clears up by tomorrow as I really don’t want to be traveling in the rain. I don’t mind getting wet if I am just walking in the rain (I love it!) but if I have to go somewhere, I hate being in wet clothes. I don’t usually carry an umbrella in stormy weather because all you are doing is fighting with the damn thing and going to get soaked either way. I will carry it if there is no wind, which is what I hope the case will be tomorrow.

I’m glad I didn’t have to go into town today. There was a fire inside one of the stations and flooding at another one. Good going MBTA! The line was down for a good couple of hours. It is now just getting close to being on time. If the stations can’t handle heavy rain, I don’t know how they are going to handle the winter. This past winter there were major delays all over the place. Commuter rail going to the suburbs were affected as well. It was a disaster. I hope this winter won’t be as horrid, but you never know until January.

I had therapy though we didn’t talk about therapy things. Our connection wasn’t great today, probably because of the weather but I think my therapist needs a new phone and she is in great denial about it. So we talked about tech stuff. She was amazed that she went on the internet when I send her links to my blog. She had no idea. Talk about being clueless. She also doesn’t want to lose my text messages, which I can understand. She did that before and doesn’t know how she did it and boy, was she in a panic. I tried explaining to her that getting a new phone will suck for a little while but she wouldn’t listen at all. This is what I am getting from therapy. Counseling my therapist on cell phones and how the internet works. LOL. I found it funny and made a comment about it. She just laughed. She did read the yesterday’s blog that I sent her. She said that it was good that I sent it to her because she doesn’t know when her anxiety about my pain is interfering with things.

We then talked about my writing, or rather the lack of it. Today has been a long day because I woke up so damn early. She said to print out the things that I have written and read it over. Maybe that will spark something. I haven’t done that yet. I was describing the difficulty of writing when she asked if I had any journals about psychosis or something to that effect. I told her I just have suicide or self harm journal articles. I suppose I could Google something but that sounds like a lot of work for something that is supposed to be fiction. I don’t really want my short story to become a clinical paper. She really wanted me to write about my early experiences with my fantasy world but it would be too triggering for me and then with the weekend coming, her not being available, it would be tough to sit through all that stuff. So it stays in my head where it belongs. I’m already having enough anxiety over the anniversary coming up next week. What keeps going through my mind is when I got the phone call from my PCP while I was driving to my therapist’s appointment (I had a car then). I remember having to pull over because I wanted to listen carefully to what he was telling me and not crash into something. After the phone call, I was numb. I had CES again and I was to report to the hospital the following day for surgery. I am glad I had therapy that night because I was close to losing my shit, but it was a weird calm. I knew what to expect this go round because I had been through it before and I had the support of my group. I didn’t know when I would be able to see my therapist again. I was walking when I went to the hospital but wasn’t when I left, not unassisted anyway. I was walking with a walker or a cane. I can’t remember. I just know my left leg was weaker than it was before the surgery. It is what lead to my disability. I know that if I didn’t hurt my back the second go round with this horrid condition, I probably would still be working now. I lost so much after this but I was determined to make as full a recovery as possible. I had to fight to keep my PT appointments, even though they were just telling me to join a gym. A gym wouldn’t help me. I would have to figure things out on my own and fuck that. I wanted someone to show me what I should be doing and how to do it. That is how I learn. I think during my recovery time my therapist started with the phone sessions and it just continued even after I recovered. If I couldn’t make it to where she was, I would have a phone session. It didn’t become a regular thing until I no longer had access to a car to get to her office thirty miles away from me. Both my cars died on me. They were used when I got them and I just didn’t want to put more money into old cars. I do miss the Camaro. That car was sweet. I got my first speeding ticket with that car. I think I still have the violation somewhere in my files. It is paid, of course, but I just wanted to keep it.

There’s a lot of things I wish I knew when I got the second diagnosis of Cauda Equina Syndrome. Like how my bowels and bladder were going to be. They still don’t work the way they did before. I had retention and leakage with my bladder before the second surgery but it got worse after. If I had checked out the AFO before I got CRPS in my ankle, maybe, just maybe I wouldn’t have it today. These are the things that go through my mind. But mostly it was getting that phone call saying that I had CES x 2 that kills me to this day. It’s going to be a rough week.

ARGH, Another Pain Day

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, depression, mood disorders

ARGH, another pain day

I woke up this morning and I was fine. I made a phone call to my PCP to find out if my prescription was ready to be picked up and it was. So I set out to go into town and get it. I was feeling okay, not 100%. I am never 100% but felt good enough to venture out. I really wanted to stay home and relax but I wanted my Hawaiian coffee. I stayed at Starbucks for about an hour before heading to town. By the time I finished walking to the PCP’s office and back to the train station, my ankle started up on me. I just missed the 1230 bus so would have to catch the 1330 bus, which meant having to wait a half hour at the station. I was feeling really worn out and just wanted to go home but I wanted to fill the prescription and then not have to go out tomorrow. So as I was waiting in line at the pharmacy counter, my ankle had enough. It screamed and I almost gave out a little yell. I couldn’t believe it. It has never done this before. Luckily, I was called next, then sat to wait for the script. I was grateful to sit down a bit or I would be crying.

I had tweeted Walgreens over the weekend to say I was upset with their customer care. They got the details and while I was at Starbucks, the manager called to apologize. She agreed someone should have called me to tell me what was going on with my prescription (Zofran). She apologized and said that she would call me back when the issue was taken cared of. Apparently, because their system was down, my insurance thought I picked it up and then was trying to refill it so it wouldn’t go through again. They had to cancel out the transaction to let me have my meds. It was complicated and then three hours later when I went to pick it up, it still wasn’t ready. So glad I didn’t go when she said it would be fifteen minutes! In the end, it helps to complain to upper management to get things done. I know some people have problems with the alerts and I keep getting refill reminders more than I get prescription ready alerts. It helps to also have Twitter as a go to for getting customer care. I seriously doubt I would have the meds ready when I came if the manager hadn’t called me this morning. I would have had to wait longer for them to figure the damn thing out and I would again be out of my meds for possibly another day. There would be no way I would be able to wait longer than 15 minutes anyway. My bladder was telling me it was time to go home and my ankle was already crying. It needed to be put up, like it is now. I desperately needed to take a pain med so needed to come home as soon as possible.

I am glad I didn’t buy the Hawaiian coffee because I don’t like it hot. I would have to make it iced and I am just not that talented. I was able to get my Brazil Sertaozinho today. I can’t wait to make that coffee tomorrow. It’s like milk chocolate in a coffee cup. I have had that iced and hot and enjoy it. It’s probably the only thing that I enjoy right now. My mother was confused as to why I bought another bag of coffee. I told her it was different flavors. Really, they are just different places where the coffee is produced. I forget where my Kati Kati is made, but I still have that, household blend, and soon will have Pike’s Place. I am not going to get Pike’s grounded until I am done with the household blend. I have a quarter of a bag left.

I am not planning on doing anything today. I do have to eat something as I really didn’t have breakfast or lunch today. I had a ring ding this morning but I don’t think that counts as breakfast. I am totally wiped so I need to rest a bit before I try and make myself something to eat. While at Walgreens I was able to get some shredded cheese so I can use it for my burrito. I might make eggs. Or I might make a turkey sandwich. I just remembered I bought some turkey breast with my online grocery order. I am so glad I can order groceries online. It is so convenient and doesn’t hurt me. I can order them and have them delivered and I don’t have to carry the bags up the stairs. I just have to put them away. I won’t order eggs again, however. I had to get a credit because two eggs were broken out of the dozen and a half that I ordered. It was something that I feared would happen.

I tried getting a hold of my therapist today but she must be really busy as she hasn’t gotten back to me yet. Now that it’s late in the afternoon, I don’t think she will. I am just feeling really out of sorts and depressed. This pain is really throwing me for a loop. Just when I think I have made it go away, it flares up on me again. It is really bringing me down. I am not suicidal but I wish someone would take me out of my misery. I can’t stand being in pain every day. You would think that I would be used to it by now but it’s not something you ever get used to. Today I went out and did a few things but tomorrow I will have to rest. I might have to rest Wednesday too because Thursday is going to be a long day. I have to deal with my father and then I have my pdoc appointment in the afternoon. I haven’t quite decided how I am going to get to the red line as my father is on the orange. I will have to time it right to get to where I need to go, which means more walking and traveling. I don’t know if my ankle is up for the task. It kills me that I can’t do things every day like “normal” people do. I will have the Friday and the weekend to recover but I don’t know if my mental health will. I am just getting really annoyed that this pain hasn’t let up despite rest and pain meds. Or it has and then soon as I am a little bit active, I am in agony all over again. I am glad I have the energy to do things but paying for the efforts just isn’t fun. It outright, just sucks.

In a Shitty Mood

by Midnight Demon, posted in Bipolar Disorder, blogging, chronic physical pain, depression, mood disorders

In a Shitty mood

I’m in a shitty mood right now. Pain has come back with a vengeance and have been trying to come up with a way to take my night meds without hurting myself more. If I stand on my foot, the pain is temporarily stopped but soon as I get off, it returns worse than before. I took some pain meds fifteen minutes ago so I am hoping the pain will ease some and then I can stand up and take my meds. I should have taken them when I came back from the bathroom but thought it was too early. Then my medication app went off and I started cursing. This pain has gone on for about a week now. It is dragging me down into a well and I know soon I will be thinking about ending my life if it continues. Either that or ways of chopping my foot off. Just cut the part that hurts away and I will be better. Least that is my theory, though I know it won’t be true. My nerves will have a field day and a half should I attempt it. So cutting off the affected limb is out.

It’s really stressful to be in pain every day. Yesterday I got notification that I will receive my disability payments until I am 65. I found that it was depressing. It means I can no longer join the work force. That I am truly disabled and I don’t like being disabled. I thought I made peace with this idea of not being able to work but was hopeful that once the LTD stopped, I could face the possibility of finding a part time job. Now that doesn’t seem likely. I can’t go to college and I can’t work. What the hell am I going to do 24/7? Sure I will sleep for at least 6 hours so that will leave what, 18 hours to do something? I can write but it only comes in spurts. Sure I write on my blog frequently but it’s not the same as writing for my book, which I have my doubts on. I know I might sell a few copies of the new book, but I doubt it will be as much as my first book. Or maybe it will be more because it’s concentrated on something else. I don’t know, it’s frustrating because I know I will never be a Neil Gaiman or a Lawrence Block. My writing is just not that great all the time. Even my stories that I have posted on my blog don’t get read that wildly. I am just a dark writer and unless I find a dark audience, the material is just not going to go anywhere.

I have thought about what I am going to do with my check now that it is secured. Maybe I can save up for a college class online and see how that goes. There is a psychology class that is available only in the summer at UMB that I have been dying to take. It will take some budgeting but I think I can do it by next April. I also want to go on a trip to see my friends out in California. One lives there and three others have moved there. It would be nice to see them again. Then I have a friend in Texas that I have been dying to see since she left Boston. My cousin also just moved there so I will be killing two birds with one stone. Least I hope so. Texas is a big state and unfortunately, my friend lives on one end and my cousin is in the middle. Not close together so it will take some planning. Least she is closer to him now than she was before. So next check will be a huge saving deal where I put money aside for travel and some aside for college. But all of this is mute if I end up dead because of this fucking pain that won’t go away. This is the second month that I have had a bad flare up where I had to take strong pain meds to quiet it down. I thought after the good day I had earlier I would be fine. All that changed when the pain became intense that I couldn’t ignore it anymore. Sometimes the pain goes away if I don’t pay attention to it and then there are times when doing that just intensifies it. I guess getting the migraine earlier out of the blue really caused my mood to shift.

It started while I was watching the OSU game. Western Michigan had the ball at their 2 yard line and the crowd noise went ballistic. I know the volume on the TV was loud but the crowd noise made it amplify. I should have known I was getting a migraine but didn’t think nothing of it. My mother came to the kitchen so I switched TVs. I watched from the living room and my head started hurting. I was also becoming irritable and tired. I was watching baseball and every time I switched games, from football to baseball, I felt like I was watching golf as the baseball game was so quiet compared to the football game. I watched baseball during halftime and then when they place Ogando in whatever inning it was, I went to my room. I can’t stand to watch him pitch because he loves giving up the long ball (homerun). But he did good today, kept the shut out. It wasn’t until I heard a saw running that my head exploded with pain. My sister is doing construction in her kitchen. They were still working on it from this morning. I immediately took my migraine pill before nausea could set in. I guess that was why I was sick the other day. If the nausea lasts more than 24 hours, I usually end up with a migraine some where in the next day or so. This is why I need my Zofran. I know it’s the weekend but I should be able to have them fill it. If it doesn’t cost too much, maybe I will pay out of pocket if insurance is the issue. I can’t imagine it can be but I won’t know until someone picks up the damn phone and tells me why they can’t fill it. If they need a diagnosis, I can tell them but they probably want it from my doc, which means having to wait till Monday. I will try tomorrow to get someone in the pharmacy and then if I don’t get someone, I will tweet walgreens to make a stink. Sometimes I get a faster response tweeting than I do on the phone.

I really am trying not to let the pain get the best of me but it is so fucking hard. I am in such a shitty mood. I need to take my night meds so I can try and get some sleep. But the throbbing is so incessant. I just need about 5 minutes to stand to take my meds and then be back on my comfy bed. I don’t think that is asking too much after all the walking I did and stair climbing, it should be a piece of cake. But no, not tonight. The ball of my foot is being prodded so viciously and angrily. It’s in my between the last two metatarsals of my foot. And the pain is going to the side of my foot near my ankle. Complex Regional Pain Syndrome sucks so bad. I guess I should be grateful that it’s a mild case and not severe as it can be. Doesn’t mean I like it very much. This is why I am disabled, aside from my mental illness. My mental illness is the 1st diagnosis that lead to me being disabled. Then you add my physical disability and whammo, I can’t work anymore. I really can’t stand this. Being in mental pain is one thing. I thought, at one point, being in physical pain was better. How wrong was I? Terribly wrong. I only thought it was better because there would be medication for it. But I soon found out that being in pain all the time screws up pathways and shit that medications just don’t touch. I would have to take Neurontin and my opioids to get total relief for ONE day. But the problem with the Neurontin is that it makes me hungry and I need to watch my fucking weight. So I don’t take it unless I absolutely have to. It’s hard to tell when I am having a nerve pain attack and when this is physical pain that is only helped by narcs. Usually in this flare up, I have to take a Neurontin or a dozen to get relief. And I do mean a dozen. I will take a handful and then be fine for a week. Then I know it was nerve pain and not physical pain. It’s been an hour since I took the pain meds and now my foot has calmed down so I know that it was physical pain. It’s still throbbing but with less intensity. I can now take my night time meds and try to go to sleep. Maybe the shitty mood will be gone by morning.