Tag: chronic illness

just my daily blog post

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

Just my daily blog post

I woke up and didn’t want to get up. But I wanted coffee and a shower. I got up and my feet were killing me. I walked to where I have my clothes and that was extremely difficult so I decided not to take a shower. There would be no way I could stand and I can’t seem to sit and shower. I no longer have the hand held showerhead in there as my mother hated it. And whatever my mother doesn’t like goes away. Pisses me off because I take more showers than she does.

I had some coffee and unfortunately, we chatted. It was all that she felt that if I saw the “right” doctor, I wouldn’t be in so much pain. I told her even if I got an ankle replacement (not even remotely possible), it wouldn’t help. I tried to explain that my nerves were messed up and my brain kept thinking I was in pain when I wasn’t. It fell on deaf ears. No matter what I said, I couldn’t change her mind. I flipped on her and told her to go to the hospital she wanted me to go to. She said she did and the doctor was a jerk. Oh, really? I said I could find you another doctor, he isn’t the only knee surgeon in the place. She didn’t answer me. That shut her up.

I went upstairs once I finished my coffee to get dressed as I had to do an errand for her and get my prescription at the pharmacy. She wanted me to buy some things and I got them for her. I came home and my feet wanted to murder me. I had wrestled the lace up brace on and it was going to stay on. I hate this thing. I won’t be wearing it tomorrow when I see the neuro because if I have to take it off, I won’t be able to put it back on and my ankle will hate me. I am not looking forward to it because it is a long way to go to see my neuro. It takes about an hour and a half from where I live by public transportation. Then there is a walk from the station stop. If I didn’t like this neuro, I would see someone else.

After this, I came back to my room to rest. I wasn’t in a huge amount of pain but I was sure as hell sleepy. I kept nodding off so decided to take a nap. Without meaning to, I slept the entire afternoon. I woke up around 1830 not knowing what day it is. I thought I missed my appointment. But it was still Wednesday. I got up to have something to eat. I really didn’t know what I wanted. My mother made hot dogs and potato pancakes. I had one and then made some tea. I got a couple packages of crackers with peanut butter and had that for supper. I didn’t want to make anything. All I had was pizza or hot dogs. I really need to go to the grocery store to get some food but I am waiting until I get my monthly food stamp money to be deposited on my card. I will go then, if my feet don’t kill me.

I wrote to my therapist last night telling him that I can no longer see him temporarily and could we see each other monthly or so until I literally can be back on my feet. I haven’t had a response yet. I emailed my psych to let her know what has been happening and she wrote that we will go slowly on the new mood stabilizer. I didn’t expect anything else. I told her I thought I was hypomanic the other day with my burst of energy, which is further fucking up my sleep. Today I left a message with my TG doc asking about the T increase as I haven’t heard from her still. I haven’t heard back from her or her secretary either. I feel like so many balls are in the air and no one is catching them. I hope I hear back from my therapist. I feel bad about not seeing him but as I explain to him, it takes a lot of energy which leaves me really hurting after our meetings. I just hope he doesn’t want to end. I will be screwed. I told my psych about this and she didn’t say anything about it. She never does when it comes to therapy. She has told me that whatever I decide she is okay with.

With all this I am feeling really down and feeling useless because I just can’t walk like I used to. I really hope PT helps with my right foot as I need to get better from it. I hate being in so much pain and not knowing what to do to help relieve it. Last night I was putting diclofenac gel on and my heel was really swollen. The gel is the only thing that helps bring the pain down some but not totally. A little is better than nothing. I am really surprised my pain meds doesn’t touch the pain in my heel at all. It just makes me think that something is going on either with the heel or the tendons around it. The golf ball was really inflamed last night as well, and I think that swelling is what irritates my heel because it is right where the plantar fascia is. I’ve been using ice but it numbs it and that is all I get from it. It doesn’t help to bring it down. I really hope my PT has some ideas to help me get back to walking again. I don’t know what I am going to do otherwise and I am NOT getting a cortisol shot! I don’t believe them and think they weaken the tendons more than reduce the swelling.

the golf ball

payback from energy burst

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

Payback from energy burst

Last night I was wired. The energy I felt continued and I stayed up till about 3 watching videos of news reports. I usually don’t but want to keep up with Cheeto’s investigation. I am now paying for it because, while I was energized, I broke down some boxes that I had around my room. I had no where to put them so just kept them on the floor. I just brought them downstairs, which was tricky because my mother had my washed clothes on the fucking stairs, thus creating a damn tripping hazard for me. I fucking hate when she puts shit on the stairs, especially the last few steps.

The weather shot up to over 60 degrees today so I got a migraine when I woke up. I had a slight headache and when I went downstairs to make a cup of coffee, I started to get nauseous. I took my meds right away as I knew if I waited, the longer the headache and nausea was going to last. And I really didn’t want to puke up my coffee.

I haven’t done much today. I chatted with a friend for a bit. I wanted to make breakfast burritos but my damn heel is hurting and is causing my ankle to hurt as it compensates for the pain. My TG doc’s secretary called me and I see my new pcp in two weeks. I canceled the appointment with the chickenshit one. Hopefully he will take over prescribing my pain meds otherwise, I am going to be screwed. I will need a refill by then. My TG doc hasn’t gotten back to me about changing dose and I am to have the shot tomorrow so I guess it will stay the same. We didn’t talk about what she will increase it by so I rather stay the same until she tells me otherwise.

I wanted to write something last night, anything, to calm the nervous energy I was feeling. I had a flare but I think the energy was masking the pain. My legs were really sore today, too. I just didn’t know what to write. Nothing was coming to my brain about a story or anything and now that I can think straight, I realized I could have written the story I had outlined that has been circling about the last three or so years. I have no idea where the notebook is for the page I wrote when trying to start. It was difficult as I felt like I was reliving the story. I really didn’t get too far as I just wrote a little and then had to stop because I was overwhelmed. I have no idea if I will be able to do this. Even writing the outline took me back to what things were back then. I know this sounds weird but I can’t say more than that.

I wanted to shower today. But my feet hurt and I know if I tried, I would pay so I didn’t. I wanted to shave my head at least but I still have nicks on my head and a scratch on my forehead from when I sort of lost control of the razor while going around my ear. It was messy. I still have a small chunk of my ear missing. Ugh. Tempted to let it be and then see the barber in three weeks. I still need to make him his favorite dish but I haven’t been able to get the ingredients as I haven’t been to the store. I might go tomorrow if I am feeling somewhat normal. I will just grab the grocery store meat rather than the butcher as I don’t want to be going all over the place. It will wear me out and then I won’t do shit. I still want to make my cookies so we’ll see what gets made if I am feeling up to it. I think my mother wants me to go to the bank as her bank book was where I usually grab it when I go out. But there was no way in hell I was going out in the sun with a damn migraine. The bright light might have triggered it when I opened my bedroom door. I am so photosensitive it isn’t funny. One of the many reasons I hate going to the eye doctors.

Because of the Amazon app uninstall/reinstall bullshit, I now have a shit ton of duplicate songs on my storage media. I now know where the files are kept thanks to the music app that I thought was messing up the files/music to begin with. But now I got to go through each artist’s folder and see which is duplicate and which is not. I have like 3 cry pretty files and not sure which one to delete because I have or at least had, all my music in one particular folder on my external card. UGH I am so annoyed and it is going to take a lot of fucking time to get this right and not delete something accidently because I don’t know if I can get it back. I was able to at least get rid of duplicates for one album so I am happy about that. I wish there was a way to see in the app where the file is and then delete it but it involves going back and forth, which is a pain in the ass. I really blame that stupid customer service person for not telling me it was going to fuck up my music folder if I did what she asked. And all Amazon was able to do was say, oops sorry. Shitheads.

burst of energy

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

Burst of energy

I had slept through my alarm to go to PT. I only woke up when my PT called me wondering if I was okay. I had seen her before and she knows I don’t skip appointments without calling or emailing her why I didn’t show up. Once I was semi fully awake, I called the office and told them I slept through my alarm. My PT wanted me to come in sometime this week but all they had was morning times and I am not doing well with morning times so declined. They had an opening next week in the afternoon so I opted for that. I will have two sessions next week but that is okay. We can adjust if we need to.

I needed coffee. I made a cup, a big one, and had a slice of leftover pizza. I then went up to my room. I wanted to clean one corner of my room that I have been neglecting forever. I had started sorting through when I had an avalanche a few months ago but I just haven’t had the energy to do anything else but throw the mess somewhere else in my room. I have a bag of clothes that need to be washed and some shit on the floor that needs to be picked up and tossed. I found one boot but no idea where its mate is. It might be in the closet. Also found a dress shoe, its mate also missing. My back finally cried uncle so I stopped. When the spasms cleared and the pain subsided a bit, I went downstairs for dinner. My mother and I planned to have hot dogs and tater tots but I wasn’t going to cook. My back and foot would kill me and I want to finish what I started. I have a shit ton of boxes. I am going to keep like three to put the books on the floor in and then bust the other down so they will fit in the recycle bin. I will also get rid of my trash and recycles. I also need to bring the good will stuff to the bin a few blocks away. I found some clothes and things I no longer use. Once I can access the closet, there might be more so I don’t want to bring the stuff there yet. Once the rug is cleared, I will vacuum and then if I am able to move my heavy mattress, get vacuum up the dust bunnies behind my bed.

Yesterday I was sort of participating in BPD chat. We talked about DBT (Dialectical Behavioral Therapy). I said that I had the binder that I was given when I was “forced” to go. Back then in 1999/2000 it was the “thing” for self-harm and borderline personality disorder. I don’t have BPD, but I had some traits at the time. I no longer do as I no longer meet any of the criteria. Anyway, last night I tried to get the bin under the bed that has the binder, I think. But my bed has sunk and I couldn’t get it out. I have no idea if the mattress and box spring sunk into the rug or the frame of the bed tilted because I am always on my bed.

My foot is already starting to be a brat. Last night after the football game, I was listening to music on my phone. I had to charge it so I placed the phone on my lower leg and OMG it set off fucking pain. The vibration from the phone traveled to my foot and it started vibrating. Then pain started and I didn’t go to sleep till after 330 am, hence why I missed my PT appointment. I wrote to my psych, like I always do when pain is bad. Think I told her my plan for killing myself. She didn’t respond with police at my door or a response to the email so not sure she found it concerning. I didn’t say specifics, I never do, but I do have some things in place for when I feel I can do it.

I haven’t heard from my TG doc yet. I do have my blood work back and I am so happy my hematocrit is up. This is your red blood cells and basically determines if you have anemia. I have always been around 30 but I am up to 36.5! I have never been that high before so the T is producing blood cells in my bone marrow! Maybe that is why I had a bit of energy to tackle my room. I just hope I can tackle the boxes. I have been meaning to for weeks now and they are still there. I want to break them down so they fit in the recycle bin better or at least can be tied up to put out on trash day. We’ll see. Will be a lot of work, but I can’t do that now as my back hates me. Standing and moving my upper body just hurts. Maybe I can sit and do it using the folding chair I have. Once I have that done, I will try to do the area in front of my bookcase and desk. I got to get rid of my old desktop. I had formatted it but never installed the drivers right so everything is huge. It is more than 10 years old. I know some computer places will take them for a fee. Might do that and also get rid of my old laptops that no longer work. I will gladly toss the POS in with it. Fucking waste of $300. For $400 more I could have the laptop I have now and not have a headache!

New slippers and more pain

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

New slippers and more pain

I had to buy new slippers because the ones I have been wearing for almost three years now are worn out. They were my father’s. I put them in the box the slippers came in. These have more support than the old ones and are much softer, which is why my CRPS foot hated them. I am not sure it will get used to them. Some times the allodynia isn’t this bad. I am still in a sort of flare so hoping when the weather is back to above freezing, I won’t hurt so much with the top of my foot. It has been doing the sweating but staying dry and cold thing all day. It is driving me nuts. I would put a sock on but because it feels like it is sweating and is sensitive to materials right now, I don’t think it is a good idea. If it becomes a block of ice, I will have no choice.

I put through a couple prescriptions today and one of them was more than it was last month. I had to call my insurance to find out why and they said because the cost of the drug was low so it had to be charged a dispensary fee. Crooks. It is only a dollar more but if any of my other meds are more than that, I am screwed as I made sure to have enough money for meds this month. I have five meds I need a month that I cannot get through mail order. I am all set with my mail order meds at least through maybe April, I think because I had refilled them all the end of December. Last year they didn’t cost me much for a 90 day supply and I hoping for the same this year. But the 5 I get at the pharmacy all have different fill dates so I have to remember to have the cash for them. I am hoping my T dose will increase when I see the doc on Friday, which means getting a new script for it. I budgeted for it but if she say gives me two vials, I am screwed because I just budgeted for one. All tricky trying to remember this shit only because I am an impulsive buyer and will spend when I think I have enough when in reality I really don’t. Thanks Bipolar Disorder! I wish one of my checks took into account the cost of living like SSD but it doesn’t so I just have a fixed amount every month. I buy little things when I know I can afford them. I really need to stop it but I can’t help it. I see something, I want it.

I bought an OTG (on the go) thing and didn’t realize my phone wasn’t compatible with it. And because my brother in law took down the recycle, I no longer have the packaging it came with so can’t return it. I am not going dumpster diving for it either. Too fucking cold out. I thought it was a neat thing. Maybe when I eventually upgrade my phone it will have this feature. I might end up selling it for whatever. I don’t know. I am too tired to think about that right now. It was like 8 bucks so not a huge loss.

I hope I can sleep tonight as I slept late today. My med alarm went off and then I went back to sleep, which hasn’t happened in a long while. I took Benadryl before I went to sleep last night so I was kind of still hung over. I need to read Harry today. I haven’t been able to read since Sunday I think. I hate when pain ruins my reading rhythm. Harry is the only book I can read on a daily basis or close to it. But once I stop, seems I just forget about the book and it will be a while till I pick it up again. If I can get another book in this month, that would be good. I am doing another reading challenge. I know I shouldn’t but otherwise, I don’t think I will read the books I buy.

A couple of months ago, I had a problem with my music where, after Amazon told me to uninstall/reinstall their app, I thought I lost music. Turns out, I didn’t. And in downloading all the songs that Amazon app had lost, I created duplicates of the songs. It turned out that the app I was using just wasn’t showing the music on my phone! So I junked it, which I hated doing because I had paid for the no ads thing. I went through different apps and found one that was kind of good. Only thing that sucks is that I needed to remake my playlists. One playlist, rock, had a lot of songs on it as I just downloaded whole albums or artist in. I couldn’t remember who it was and then there are songs I didn’t want. The nice thing about this new app that I have been using is that once you delete a song from the playlist, it is gone unlike the app I paid for. So I just created my Mary Chapin Carpenter playlist. I got distracted and put one of her albums in the wrong list. UGH. I had to redo it. There are two albums of hers that I do not want in my playlist because they are the same songs as her previous albums so I didn’t want duplicates. In her latest album, Sometimes just the Sky, it has some of her previous songs but recorded differently. The album is okay and I do like it but there is one song that I do not like, even though she does, LOL.

So today is day 140 of my transition. I posted yesterday my update but thought I would do here as it has been a while. I might make this a short post for those that are following so be ready for a duplicate, lol. Things are still the same. The only thing I have to report is that the hair on my chin is growing in more finely than before. Also, I shave my head. It used to be that I would have to keep up with it daily or up to three days. Now it is daily or every other. My hair is growing really fast and pretty soon I am going to need to seriously budget barber expenses to put my barber’s kids through college, lol. I keep a military cut and even though I got it cut last week, it is the length I had it before seeing him. So I will have to work out something with my barber to get haircuts on months I can’t afford to see him. I tried cutting my own hair and it was a disaster so not doing that again! I need to shave before I lose the lines where I am supposed to shave. It is tricky in the back because I can’t see but I can feel where I need to and if I goof up, a few days time is all I need for it to regrow.

There have been no other changes. My voice is still in and out at times. My family hasn’t noticed a change but that might be because I am around them all the time. Hoping with increase in dose, that won’t be the case. I really look forward to the day I come downstairs with stubble on my face and my voice like a man’s. HAHA shock my mother day!