Tag: chronic illness

three hour evaluations

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

Three hour evaluations

I had my three 1 hour evaluations today for the pain program. First one was with the social worker. Think I gave too much information about my suicidal history than I would have liked. I did have a teaching moment where I told her “safety contracts” were shit and safety planning was in. She wrote down all that I wrote so I hope she looks it up and it benefits her.

Then I met with the occupational therapist. He was good. Told me to use “wet” heat more, like on a daily basis to try and reduce flares. Yea, cause I know when they are going to happen. I liked the idea though. He was the only part of the three hour ordeal where I didn’t feel threatened.

The last hour, or should I say half hour, was with a physical therapist. I hated this so much. And it upset me more. She had me dorsiflex my foot and when I did so, immediately said I didn’t need the AFO. WTF I am so damn tired of fighting to wear this brace. I probably don’t need it but I know me and how I am when I am out. The last fucking thing I want to do when I am tired after an appointment or other reason I am out and about is drag my leg because my ankle went out or my ankle is too fatigued it can’t flex anymore. I explained this and I got a “yes, I understand”. No you don’t you bitch! You don’t live my life. These people deal with chronic pain patients and this is the attitudes they get? Seriously?? I honestly don’t care if I get into the program or not. I have enough to deal with mentally than deal with the so called professionals who think they know what chronic pain is like when they have never experienced it. I hope they don’t because they are in for a shock when they do.

This PT also said my hips are tight. Yes, I know. Four fucking back surgeries will do that. I also don’t have a curved spine in the lumbar region. I know, it’s more like a question mark than an “S”. So basically my ankle/foot are fine and my hip muscles are tight. I don’t get what she wanted from me, maybe more pain. I don’t know. She said one of my PT evals had my fexion as a zero and today it is a 5. I told her it all depends on the day. I am sure if I saw her now, I wouldn’t have the same results. Or if I had been walking more to get to the office (not wearing my AFO, for example). Then she harped on the right ankle. It will get better, though I am not sure what will happen as they have me going for my left ankle/foot not my right. I am just so disgusted and frustrated.

I asked if I can continue seeing my PT and I could until the people I saw today met and discussed if I was suitable for the program and to work out what treatment plan will happen. It will take a few weeks. I told her I have problems remembering the exercises my PT gives me, even though she gives me a sheet so she marked my memory with a question mark. Okay. I do have trouble remembering something I saw for five minutes and then didn’t have to work on until the next day. I didn’t do any PT today and not going to as I am exhausted. I thought I would be able to make a taco tater tot casserole but I don’t know what I was thinking. I had to rest when I came home and then I just collapsed. I couldn’t move anymore. My foot and ankle started barking at me.

I am debating on keeping an eye on the Sox game or just going to bed. Today if they win, it will be their 100th. I kind of want to stick around for it but I am just so wiped out that I don’t think I can. I just turned on my AC and turned it up to 74. I need air in my room as it is stuffy but it’s kind of cool out. My cheeks are burning up, they are so hot. I need to get a dehumidifier. Cool days like this I can smell the drywall. I hope I don’t have mold. That would be one expensive job to remove it and my mother would freak.

just another busy day with PT

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

Just another busy day with PT

I didn’t get much sleep last night. My feet got cold as the temps were chilly. Then they warmed up after wearing thermal socks. I took them off and OMG my foot went berserk. It felt like a knife was cutting an arc in my foot. It took several hours for it to settle for me to sleep. I also had anxiety. I tried reading and it kind of helped to take my mind off the pain. The book is almost done. I had about 60 pages to go when I read a couple more chapters before shutting off the light. When my alarm went off at 630, I was in a pissy mood. I didn’t want to get up. I snoozed the alarm and then realized I didn’t give myself too much time for snoozing. I really had to leave the house at 7 to get to my appointment on time.

I got up and brushed my teeth. I took my meds and got dressed. I was kind of rushing as it was now after 7 and I wasn’t sure what the buses were running as I was going in the opposite direction today. I got to the station and waited for a bus that would take me where I needed to go but I was getting impatient to took the train to the station closest to the PT office. I still had to wait for a bus. I just wanted coffee and maybe something to eat at that point. My PT was running late so I got some time to finish my coffee. She had computer problems so was running late. We chatted and then she worked on my ankle, which had already started hurting soon as I left the house. She was easy with me. I have no idea what she was doing. She asked if I did the exercises and I just said I was tired, like leave me alone and can I go home now? I was so cranky.

I got home without incident. It was still early. Plan was nap, eat something, do laundry. My phone kept interrupting my nap so I silenced it. Then my sister called. I missed it because it was on silent. I called her back and she asked where my mother was. I said she was out. It was close to when my niece would be coming home so I told her I would let her in and I went downstairs. I made bacon, though it didn’t look so good. It tasted okay and I don’t feel sick so I think I am okay. I really didn’t feel like opening the other package. I wanted to shower before I started the clothes. My mother came home and her sugar was low. My sister was with her so got her juice. It wasn’t horribly low, just under a hundred. The juice would be okay. Then she ate a banana. I felt better about that.

I put the groceries away though I didn’t feel like it. She bought a crap load of eggs and four (4) cases of tomatoes because they were on sale. Italians. What can you do? After I did all that, I went upstairs to grab a change of clothes so I could shower. It would prove worthless as it was too humid. I was so damn hot. I forgot to put the cold air on. I just went up to my room to cool off. I just ate so I didn’t want dinner. I might have some of my cake. I really want to make a taco tater tot casserole but I really don’t want to clean up. I will try and get up early tomorrow so I can make it before my appointments. Least if I make it, I will have dinner after all my appointments tomorrow.

Feeling lifeless again with jelly legs

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

Feeling lifeless again with jelly legs

I woke up in the middle of the night again. I can’t remember what for. I just know it disrupted my sleep. I woke up a little before my med alarm and kind of just laid there until it went off. I just didn’t want to get up. By the time the alarm went off. My bladder was saying hurry up so I was forced to get up. My bowels seemed to awakened too, so that was a good sign after almost four days of not going. Afterwards I brushed my teeth and hoped I wouldn’t puke as the post nasal drip started. I was just miserable with allergies in the morning. I think because the pollen is in the screens I just need a whiff for it to send my histamine crazy. When the weather is cooler, I just will hose them off. Be easier than washing them in the sink.

I didn’t want to get dressed, much less go to the pharmacy to straighten out my medication issue. I talked with the girl who has her shit together and is really helpful. I told her about this weekend and she said she would pass it along to the manager as she wasn’t in yet. I really hope my pain medication do not become an issue every month because people can’t read or look something up in the computer. I only use the one pharmacy (like I am supposed to with my pain contract). I really don’t want to have to go to another one only because of convenience.

After that, I went to the bus stop and my cousin came by. Sweet! I got a ride to the Square. I was still feeling pretty shitty. I didn’t make the espresso right as the barista put too much ice in the cup. I was too tired to do anything about it. I figured I would drink it anyway but the allergies were making me sick. I had a bagel and some of the espresso. Then I just zoned out. I didn’t feel like writing. I hardly touched my drink. I just sat there, staring out to the street watching cars parallel park and a smoker sit and then stand because he was an idiot. He sat in front of a door and people kept coming out. You would think after the third time, just stand but nope, down he went again. Idiot.

I left to go to the station. I had to use the bathroom anyway and I don’t like Starbucks. They are kind of claustrophobic to me. I left early but just got to my therapist’s office within minutes of the appointment. Fricken bus was late. I would have walked but I felt too shitty. Now I had to wait till after session to use the bathroom. I talked about things that were stupid. Nothing really of importance. I told him about the fight I had with my sister calling me rude. And about work. I miss work, sort of. I don’t miss the docs and nurses yelling at me. That part can take a hike. But there were some nurses who were nice and appreciative of going out of my way to help them, if I could. I did that for some, not all. Some times the floor would call like three times and get three different people who gave different answers. That would annoy me and frustrate the floor, which I don’t blame them, especially when it was a sick patient who was a hard stick.

I then walked home. I tried doing it all in one shot but it didn’t work. I got to city hall and had to stop. I made a phone call to the LGBT clinic for the testosterone therapy. I couldn’t get through. I walked the rest of the way then went down the stairs slowly. I caught the bus home. My ankle was killing me. Felt like the bone was ready to pop off. I hate when it gets that way. I had take a BT med after therapy. I finally reached home and was more exhausted than ever. My legs felt like they were going to collapse on me at any minute. I did some PT exercises at Starbucks but not everything. I haven’t been doing them and my PT is going to yell at me. I am getting frustrated with myself because I just can’t keep up with everything. And this week is really busy. I need to kind of chill because of the wedding and concert. I am going to be so sore come Sunday. I probably should cancel therapy for that Monday as I know I am probably going to need another day of rest. I want to see how the wedding goes. Then I will decide.

I didn’t stay up to hear if the Sox won or lost last night. They won. Their 98th win of the season. They still have 18 games left in the season so I think they are going to have more than 100 wins. I am really excited about this because this will be the first time in my lifetime the Sox win 100 or more games. I am so happy for them. Just hope the Sept curse isn’t upon them where they implode. Will really suck if they just have the wild card game because they play badly. They will be playing tough teams so we’ll see. They are off tonight as the Jays are coming into Boston. Jays have been eliminated from playoffs. The AL Central has three teams that have been eliminated. I forget who is left. Going to be exciting either way. It all comes down to these games. Can’t believe it is already September.

Sunday Blog 9 Sept 18

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

Sunday blog 9 Sept 18

I woke up around 2 in pain. My damn genitals felt like they were being crushed. No idea if they were or not. There was nothing there but OMG the pain when I touched myself was unreal. It took a few hours to settle down. When I woke up to take my meds, I just tried to go back to sleep. I would have slept through but my mother came up the stairs and she was laboring to breathe. I couldn’t relax because I was waiting for the thump of her falling. It never happened, thank god. I knew she didn’t use her inhaler like she is supposed to. She doesn’t think she needs it. Yes, cause doctors prescribe things we don’t need all the time. I am so pissed at her it isn’t funny. I really want to go with her to her doc’s so he can explain why she needs this inhaler because I obviously don’t know what I am talking about.

I got up an hour so later. I couldn’t sleep but I felt like absolute crap. I had no energy. I needed a shower and I had to go to the pharmacy to fill my meds. It was fricken cold so wasn’t looking forward to the shower as there is no heat. The heating vent doesn’t work, well it will for about 5 minutes and then go off, permanently. I think my brother in law put it in wrong or it is the wrong one for the power source. He didn’t replace the whole unit, just the heating part. I have no idea how much it will cost to replace the whole thing. I just know in the winter it sucks taking a shower because it is nice to be under hot water than freeze your ass off when you open the curtain!

I took a shower but it drained me further. I didn’t want to do a damn thing. I wanted coffee, but I didn’t want to make it. I got dressed and went to the store. My mother wanted something so I went to the pharmacy first. There was someone new there. Once I had dropped them off I went to get my mother’s things. Then I waited at the pharmacy. The pharmacist had a question for me, which I thought was dumb. She asked if I filled this on the 31st. I said I filled the immediate release. This was the extended release. She said it was the same med and I said yes but different forms. She said okay. This is starting to piss me off. It clearly states what the medication is so I don’t understand why I am questioned about it. I know what medication I am getting. I use the same pharmacy every time so they know when I fill it, etc. Just fill the damn thing! It isn’t hard, you have the information in front of you! Why do you have to question me about it like I don’t know what I am getting???

I get home and put my meds on my bed. I put my slippers on and went downstairs to make some coffee. I decided to make it at my sister’s because I wasn’t messing with a French press. I drank my coffee and I was just itching to bake something even though I felt like crap. I drank most of my coffee and then decided to make the cake that I bought about two months ago but was too hot to make because of the weather. I got the stuff and made it. I needed my mother’s help to spread it evenly then I put it in the oven. It took longer to cook because my oven sucks. My mother wanted dinner so I made that. I made a mess. The gravy had so much meat that it was all stuck together, even though I put it through a few defroster cycles. I just decided to put it in a pan. That helped but while I was trying to break up the meat, I caused a huge splash and gravy went all over the place. UGH. It even went on the wall behind the stove. I was so fricken tired the last thing I wanted to do was clean a wall. I did after dinner. I cleaned the counter too so my mother didn’t have to. She washed the pans and stuff. I wasn’t that hungry so ate half of what I put in the bowl. My sister came up with my baby cousin. She was kind of cranky because a tooth was coming in. Poor thing. After everything was cleaned up, I went upstairs.

I decided to fill my box for the week so went through the bag that I got from the pharmacy. I had a small bottle and wondered what it was. It was my Trileptal. It usually comes in a bigger bottle because the pills are big. I counted them out and instead of 60 pills, I got 30. Now I need to go back to the pharmacy to get the right amount of pills. I put in a complaint to the pharmacy on Twitter and will with the manager in the morning as they are closed now. I can’t believed they goofed! I made sure I had the right number of my pain meds. Just another hassle I got to deal with. Sucks.