Tag: chronic illness

28 Aug 18

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

28 Aug 18

My cell phone provider has been calling me all week. I finally answered the phone and they wanted me to upgrade. I told them to take me off their list as I will upgrade when I want not when you tell me to! Idiots.

I had PT today. My leg cramped up because of being weak. Then we worked on my thigh. We basically just massaged it with lotion, which I didn’t use last night when it was hurting the fuck out of me. It was hurting me today but walking around made it feel better so I didn’t care. I have no idea if massage is the only treatment for it or not. I wasn’t clear on what else can be done for it. She explained why it was hurting but it was kind of over my head. Something about the muscle being in a short position when I am on the computer or just resting in my bed. Doesn’t help with getting rid of the pain!! I still have to wear the stupid fucking air cast. I hate that thing. My AFO I had to remove on the way home. It just got really hot and my foot was burning so damn bad. I changed to my new sneakers and not sure if the plastic is getting hot from the heat or what. I got to call the brace clinic to find out what to do as this is not good. I would love to go without but am afraid that if my ankle goes out on me, I will be dragging my foot and that will be worse. My PT wants me to carry the cane with me just to have some support. I told her about how yesterday people were just stupid! I wanted to carry it just to hit people on the head. But she said just carry it in the bag. UGH ok. I need a bigger bag for all the things I need to carry. My messenger bag that I paid good money for is small for my needs. I am on the fence to go back to a backpack.

It was really hot today. I wanted to shower when I got home but lost the energy for it. I am too tired. I will tomorrow. I canceled therapy. My therapist sent me an email for that and for Monday as it is a holiday. I won’t see him until next week. By then things should be settling down some. I still have to work out the 2nd week in Sept as I have a lot of stuff going on. I might cancel that Wed so I have a rest day. I can’t do anything about seeing my PCP that Thursday as it will be a bitch to reschedule. Then wedding and concert. Yay! Not. I am still nervous about it.

My PT was telling me that she wasn’t surprised I flare every Monday as I am going through emotional stuff in therapy and then getting there and home takes a lot of energy. CRPS is a nervous system thing and so is the emotional stuff. So what ever I can do on the downtime on the ride home will help me. I usually listen to music but I can’t deal with the idiots that get in my way or the bumpy bus ride.

Tonight I am going to try and not pay attention to the game. They are playing the Marlins, interleague. I don’t like interleague games. I think it is stupid. But whatever. I don’t have a say in the schedule. The September schedule looks to be a bitch as we play tough teams, except the Mets but even easy teams we seem to lose so I can’t count them as an automatic win. We still are six games ahead of the snakes, who lost yesterday so that helped. Our last three games of the season is with NY. I have a feeling it is going to be a division thing but we’ll see. Just nerve racking but I am not going to think about it tonight. I am just going to listen to country music and maybe read Poe Shadow. Hope my pain doesn’t get worse. I usually know by 2100 if it will and it is not close to that time yet. Hate my life so much.

27 Aug 18

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

27 Aug 18

I am taking the bus three fricken hours before my appointment and I still don’t have time to write in my journal after I get my drink and maybe some food at Starbucks. I have like maybe a half hour. Damn bus is just not coming at the time I need it to. I don’t want to leave earlier because then it will be too early.

I just dealt with a massive amount of rudeness on the T today, particularly with the buses. I am a courteous person. I let people get off the bus before I enter. But others are not so courteous. On to my therapist’s office, a lady stood in front of the bus where I couldn’t pass except to the side of her. I could have tripped on the way out. I fucking hate that. My biggest pet peeve. Then on the ride home, two bikers rode by prohibiting me from getting on my bus. There are not to be any bikes on the sideway busway. I was so pissed. I made the bus but I swore if I missed it I was going to knock them down or something. I am seriously going to carry my cane as I think that will send the message I am not a fucking “normal” person. Obviously, the two braces aren’t doing shit!! But then, who looks at people’s feet when boarding bus/train? I sent a message to the T police and T. I didn’t get a response. I didn’t swear either, though I really wanted to.

Therapy went okay. I am still frustrated with everything. I have no idea if talking about things is helpful or not. My therapist has a sense of humor that is dryer than mine, which makes me laugh. We didn’t talk about anything except my pain and my anxiety of the upcoming wedding and concert in Sept. He tried to get me to talk when I was silent but I am so good at deflecting that it goes nowhere. Half the time, I just blank out.

I had bought some CRPS keychains a couple months ago and they came today. They are pretty cool. I love them. I might give one to my PT. I haven’t decided yet. I am not looking forward to PT as I haven’t done the exercises. I have been too busy and in too much pain. Plus I have been doing a lot of walking so that has to count as something (walking around the house that is, not outside. I’d be dead). I am still waiting for my CRPS shirt. The trouble is, I ordered this stuff from the UK group I am in. Things are slow and I understand because pain is a bitch. I have sent books out before I got the money for it and then never received the money. I will not make that mistake again. But now I have paypal so that will help, I hope. I’ve never used it before for sending payment but other people have sent me money or I have sent them money. Seems like a good service. As long as I remember my password…

26-Aug-18

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

26 Aug 18

Didn’t write a blog yesterday. I did a lot of stuff once my groceries delivered. I then crashed around 1430 and I was done for the day. My mother called me for dinner and it took me a half hour to get up and eat something. I stayed up for a little bit but didn’t feel like writing. The Sox were bombing at the Trop. Someone or something jinxed them and they lost their first series of the season. It was Player’s Weekend and their jerseys were horrible. I hated the hats. Tampa Bay was so much worse. They have tomorrow off and I hope it rests them a bit.

I wanted to bake something today but I went back to sleep after I used the bathroom and woke up late. By then it was hot as hell in the kitchen. I just made a sub for lunch. Then ordered some Burger King for dinner. I don’t usually eat BK, but it has been a long while since I had the whopper and onion rings so I figured why not. The delivery guy got lost. The place is not far from my house. It is like 3 lights and boom, my house is there. But he said his GPS was wrong or something. I don’t know. My food was cold so I didn’t enjoy it as I would have. I probably won’t order again. I like McDonalds anyways.

I did my med box for the week. I got aggravated because I knew the damn female hormones were on my bed in the clutter. I started throwing shit off my bed to find it. I am so annoyed. When I do clear it off, and change my sheets, nothing is going there again. Course I said that last time and it didn’t work. I got to try and keep that corner of my bed clear because it is a bitch to clear off. Maybe I will just get a box and throw shit in there rather than put it on my bed. I don’t know. I have to change my sheets as the foam topper is annoying the fuck out of me. I am going to duct take that shit to my mattress and hope it works. I honestly don’t know what to do. My next step is to get another mattress or foam thing. I will have to get it at a mattress store. There is one mattress that comes in a box and it has memory foam. It is like $600 or so. I have to look into it as it isn’t like a Serta or Therapeutic thing. I think it is called Lull. It was a stupid ad on Instagram that sucked me in. So now all the box mattresses ads are coming at me. I just want a quality mattress that will last more than a few years and stay within my budget. But this topper likes to slide off the bed as I am getting up. I don’t notice it until I get back on an there is less space between the foam and my nightstand. Both corners of my sheets are off so I can shove the thing where it is supposed to be. That is why I am worried the tape isn’t going to work. It will just slide off, come undone or something. If they sold huge amounts of superglue I would buy it to adhere the topper to my mattress. But it might be time to get another one and call the $60 a waste. The $100 one I bought like 15 years ago lasted me a long time. I only had to give it up because it was old and coming apart. Foam was sticking to my sheets and it was just gross. Now this one isn’t staying on the damn bed! If anyone has a foam topper they love, please comment and tell me what it is!

Was talking to my barber buddy. I showed him a pic of the back of my head as I just shaved it. It wasn’t as bad as I thought but he told me I should stop for a few days and then show him again to see how it looks. Then I see my barber for a line so I can use as a guide and sort of fix it. The top is getting to be the length I want it to be and should be by the time of my cousin’s wedding. I want the top spiked and the sides and back shaved. I honestly have no fucking idea how I am going to go to this wedding, with a week full of appts, and then a concert the next fucking night. I am already having anxiety over this. My sister spent good money on the tickets so I don’t want them going to waste. This is why I am so damn angry with the pain doc because if he fucking increased the dose, I wouldn’t be worrying. I would be covered. But the guy is an asshole. I still have no idea how I am going to deal. And it is a long car ride to the wedding and to the stadium so that got me nervous, too. I don’t know if we are coming home the night of the wedding or not. My sister was talking about getting a hotel near the stadium but not sure if that is still the plan. I just will be having a shit load of pain meds on me and limit my alcohol intake. Just one or two drinks will be my limit. I don’t know if my cousin that moved to Texas will be there. He is like the male version of the lunatic, but 4 notches down and can be reasonable. I really love him as he is gay and has been open in the family for a while. He just got married to his lifetime partner. They are a cute couple. I know I am going to feel like an outcast at this wedding. I always do with events on my mother’s side of the family. I don’t know if it is because I don’t hang around as much as my sisters do or what, but I always feel like a stranger.

My sprained ankle was causing me pain this morning. I did some exercises but not all because it hurt. My other ankle is a bitch and a half so I just hope it doesn’t flare up later like the dickhead it is.

24 Aug 18

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

24 Aug 18

I have had a not so great day. My alarm went off a couple of time, I am not sure. I finally shut it off but had no intention to get up. Then my med alarm went off and shit, had to get up because I had to catch the 930 bus. No time for breakfast, coffee, or shower now. I quickly got dressed after trying to balance myself as my legs were jelly. I have no idea how I didn’t fall. I was scared of the stairs but I did okay. I used the bathroom and brushed my teeth. I grabbed my headphones and my bag. I went downstairs to put on my braces and then left. I was in such a grumpy mood. I left earlier than I should have but that meant I caught the earlier bus, which also meant I had time to grab a cup of coffee. I didn’t care it was going on my debit card, even though I looked at my bank balance and somehow had to finagle the bagel again because I somehow overspent, again.

I rode the bus with my headphones on and got a couple donuts with my coffee. I wanted to try a new coffee at DD but I didn’t remember the name of it so I had a dark roast. It was the strongest they had. It worked. I wasn’t so grumpy. After I ate the donuts, I left for PT. My PT was a little late but I didn’t care. I didn’t even want to be there. She called me in and told me a PT assistant would be doing a test. I said okay. I was to walk around the place with the assistant holding a measuring thing. I could rest as much as I wanted to. I must have taken like 2 laps around before my CRPS ankle acted up and I had to rest. I had to walk another three minutes. I didn’t like this test. It was flaring my ankle and I didn’t like that one bit. The last 10 seconds I had to stop. I walked over 800 feet in the five minutes and it freaked me out. I asked what this was for and she said it was for my insurance. I am getting sick of my insurance. But whatever. I told her the difficulty of me trying to do that for 8 hours and she agreed it would be impossible for me to work if I had to walk that much because just getting there would tire me out and cause pain. I felt a little reassured but was still nervous as my benefits could be in trouble.

Then we did stuff with my sprained ankle. One exercise kind of cramped the muscle in my foot but she said that was normal because my foot is weak. She and my neuro had a discussion and both want my right leg to become as strong as possible as I need it for support as my left leg is hurt and can’t do much. I agreed as well, but it is going to take some work and I am just overwhelmed. I was almost crying on the way home because the pain in my bad ankle was so bad. I had taken a BT med before I left PT. The burning was so fricken intense. I felt like someone was trying to filet my foot from the ankle to my pinkie toe. The suicidal ankle pain was there. I was just in so much fricken pain.

I got home and I had to rest. I also needed food as I haven’t eaten since the two donuts. I wanted egg with toast but didn’t know how I wanted the egg. My foot pretty much exploded soon as I rested. This was not fucking good. It was only like 1 pm. I stayed an hour on my bed and realized I wasn’t going to make the cake I wanted to bake. Then I looked at my foot and the swelling was unreal. I had to put on the compression sock. I knew that most of the pain was because it was swollen. But with CRPS, you can’t ice it. It makes it worse. I found the sock hiding under my blanket. I was hoping that my foot wasn’t going to be sensitive and I could wear the sock for a couple of hours at least rather than a few minutes. It has been several hours now and the sock is still on. I will probably take it off before I sleep.

I made dinner for my mother and I though I didn’t want to. Then I took the stinky trash out, got the mail and some ice for my mother, then went up the damn fucking stairs. I was done. I am not doing dishes tonight. No fucking way. I am sitting with my AC and fan on listening to music until the game is on, though I am feeling kind of sleepy so might take my meds and then go to bed early. I always think this then I lie down and can’t sleep. Last night was hard as my foot was so sensitive the sheets were bothering it. I took some Neurontin to calm it down but I didn’t get to sleep until 2. Chronic pain just sucks. I finagled the financial bagel and have some money left over for the month. I bought my nephew chihuahua some Star Wars PJs. I have been seeing doggies with PJs on and OMG so fricken cute!! It made me feel better that my friend sent me his picture last night. I wish I could have a pet but my mother won’t allow it. I want a cat or kitten so bad. I am afraid that I wouldn’t be able to pay for the Vet though. It’s hard just paying for my therapist, which I am behind on his bill a little bit. My credit has been used up. I had a credit because I overpaid him a lot the end of last year. Have no idea how that happened. Probably kept paying him the monthly charges not taking into account the days that I didn’t see him. Oh well. I have been good about keeping my appts but when the cold weather comes, that might be a different story.