I have had pain med change in July on the lowest possible dose that won’t affect the 90 MME (US has this stupid rule that you can’t go over this amount or if indicated, MD has to file documentation that pt needs it). My flares are worse in winter (everyone’s is) but I really have to be careful about taking my breakthrough meds. I don’t know how to get the docs to see that this new regimen, though works when not flared. Is not working when flared and I am often left on my own (aren’t we all). I want 1 of two things either an increase in ER dose or increase in BT meds per 12 hr. 1 pill per 12 hr doesn’t help me. I really don’t want to fight anymore but I feel that unless I threaten suicide I am not heard. I have had three nights now because temps have been below 10 degrees (-12C). February is usually the coldest month in Boston. I won’t be able to take it. I don’t know what to do anymore. My pcp is a *ick and my pain doc thinks I take up exam room space. Now I will be starting PT again which always stresses me out. Just rambling.
Category: blogging
Flares and a fucking cold January storm
Flares and a fucking cold January storm
So Friday night, hell began for me. I was texting a friend for a bit, just shooting the shit. Around 2020, it felt like my high ankle bone was going to snap. I thought I was imagining things but the pain got worse. I didn’t take anything as I thought I was imagining things and then, boom, bones in my ankle and foot were being crushed so bad all I could do was laugh. This was around 2100, a half hour or so later. I took some meds. I couldn’t believe I wasn’t tired as I had a hard time getting to sleep. I went to bed at 6 Friday morning and it was now 9 pm and I was just like WTF. I knew there was a storm coming. I literally felt it in my bones! The pain got worse as the night went on. Then the morning came and I just passed out from exhaustion. I had taken a whole lot of bunch of gabapentin, pain meds, and Ativan (only 2 though) to get me through the night. Saturday, I was exhausted and slept most of the day. I don’t even remember what time I woke up. But when I was awake, pain was still there. I felt like my foot was being split in half and then when the night hours came around, I was in agony again. It took a fucking lot not to end my life this weekend because I was hurting so much. I was using the walker to get around as I just needed the support more than anything.
Yesterday was similar, though not as bad. The temps were down to as low as 2 degrees F. I wasn’t hot in my room as it was so cold out. My voice has been up and down all weekend. My mother finally said something yesterday. She first asked me if I had the window open in my room. No. Then she asked if I had my fan on. I said no. Then she said it is the cold messing with your voice. HAHAHAHA if only. Today it is not so irritated. I kept having to clear my throat as there just felt like there was stuff there and I couldn’t cough it up. Much better today though. I asked my sister if I sounded different and she said not really. I did an experiment on FB where I did a video and just talked for a bit to see if those that knew me thought my voice was different. A dear friend said that I sounded like Morgan Freeman, and I was like NO I DO NOT! LOL. She was happy to see the changes and stuff so that made me happy. She is a very good friend and glad to be on this journey with me.
Tomorrow I got to call the TG doc’s office because I thought I had the appointment with her Friday but in the patient website thingy, it says the 1st of Feb. Either I put it in wrong or they changed it without telling me. I am going to be pissed if this happened because WTF. I would have showed up Friday just to be told to go home?? Not cool when you have difficulty getting to appointments as it is. So we’ll see who is wrong.
I have my shot this week so I will be taking pics. I think my fat face is getting bigger because I am fat. It had thinned out but either the way I am taking them or the lighting is making me look like I have fat rolls on my face, which I do not like. I hate doing the selfies. I was mad one night because I was in pain and just took like 5 selfies with different faces and posted it on IG with some bitchy thing. I couldn’t help it because I was so miserable that night.
I am so glad I didn’t see my therapist today because there is ice everywhere. It snowed then it turned to sleet/rain and froze because the temp dropped so suddenly. I haven’t taken a shower in like a week. Last week I had so many doctor’s appointments that it was ridiculous. I had something every day. I got a new brace for my right foot/ankle which is a bitch to lace up. It is a good kind though, probably better than Walgreens/CVS brand because the stability things can come out. I used it on Friday and added 20 minutes to my get ready time. Thing is going to be so great during PT as the PT is going to have to help me take it on/off as I cannot bend or move to see where the laces should be laced up. I shaved and kind of buzzed my head, and totally fucked up the back. Well the whole thing is messed up as I couldn’t get the trimmer to work right so some places got buzzed and other places didn’t. My barber is good and will see me tomorrow to fix it. I will pay him on Wed. Or make him his favorite dish that he loves. His wife loves it too so I am glad I get to show off my cooking skills. I miss cooking so much. I have been wanting to bake these stupid chocolate chip cookies that I bought special ingredient for and because of fucking pain/flares, I haven’t been able to make it. I think I need more breakthrough meds during the day to help me get through the fucking day or the ER dose needs to be increased. I have had it and with winter just showing up, it can only be a bad thing in the coming months. I am going to email my chickenshit PCP and tell him this because I am going to keep having nights where I am going to bed at 4-6/7 in the morning! I don’t see him again till March and winter will be over by then or close to it. I am just worried what February will bring.
New brace and other things
New brace and other things
I didn’t have a horrible night sleeping but I had the hardest time getting up. I am glad my psych appointment tomorrow is in the late afternoon so I can stay in bed till noon or so. I still have to check the schedule to see what time to leave. I think I will take the 1 pm one as I want to write for a while. It was really cold today. My bones didn’t like it one bit.
I got a lace up brace that is similar to the one I was going to buy at Walgreens except that it is white instead of black. The stabilizer things come out too, which is nice. The guy put it too tight so by the time I came home, I had to take it off and there was a red mark on my foot. Hope it is gone tomorrow and is not too sore as I got to wear the thing. It does it job but my heel still hurts. I hope PT will help relieve that pain. Lacing up the brace in PT is going to be fun. I have a hard time lacing up my sneakers!
Getting home was a bitch and a half. There was a bus at 147 but there was no way I was going to be able to make it. The next one wasn’t until 313. I checked the next bus at the other location and it was at 247. I wasn’t going to stay at the station for a fricken an hour! I took another bus closer to my home and caught a different bus route home. I reached home before 247 after traveling through town. Such a fricken bitch having this new schedule. I hope it changes to every hour next time because it gives me more options. I was so mad.
I was so bloody cold when I came home. My room was cold. Then my feet became a block of ice so I put thermal socks on. I changed to a heavier shirt. I was just wearing a long sleeve T-shirt. The jacket I was wearing needs a lightweight shirt or I would have roasted. I wanted a nap but pain prevented that. I got hungry and made a French bread pizza. I didn’t like it. Seems the quality of it went down. No wonder the price did, too.
I plan on reading my Harry Potter book until my meds kick in and I go to sleep. My facial hair is weird. Instead of it being on my face, it is under my chin. I don’t get it.
My mother has every TV on full blast. I have the whisperer machine on to drown out the noise. I just can’t handle noise today for some reason. I don’t know if it is because I am tired or because I am in pain. I am not in horrible pain but it is just at the level to be annoying. My foot feels like it is being split in half again.
I found an old pen that I bought at least 15 years ago or more. It needed a refill as the cartridge that was in it was all dried up. The refills just came in. I think they came from Germany as it is a German pen. It is a ceramic rollerball pen. It is kind of heavy on the ink but it writes okay. I have it on my bed to use it for a bit. I am sure it will go to a hole in my room again to collect dust.
Sad, angry, and well other things too
Sad, angry, and well other things too
This week is a killer of a week. With the exception of yesterday, I have no days off. Monday I saw my PCP and other than sending me back to PT, he didn’t have any answers as to why I have a golf ball right on my arch near my heel. One of my friends called it a baseball when it was really flared up. I sent the picture to my PCP, which yielded a I don’t know see someone else. We talked about cortisone shots but I don’t want it. I believe it weakens tissue rather than help it. I asked about taking ibuprofen and this is when I knew he was an idiot because he said steroids aren’t usually helpful. UM, last I checked, ibuprofen is classed as a non-steroidal anti-inflammatory drug. And he went to med school. Moron.
I had a hard time sleeping Monday night so I slept all day yesterday. I was going to bake cookies but slept too late as I woke up around 5 pm. I wanted to go back to sleep before the sleepiness wore off but pain prevented that. My feet were giving me trouble. I couldn’t put one foot on top of the other. The bottom of my foot was inflamed. So I put some diclofenac gel on it. It took a few points off the pain enough for me to go to sleep. I was going to put some on before I left the house but fuck. People kept calling me and shit and the next thing I knew I had to leave the house. I luckily had my coffee in my mug. It was bloody freezing. I had to wear my gloves after I finished my coffee. The wind chill was terrible. I thought I was dressed warm enough but I wasn’t. The wind was going through me. I was frozen by the time I got to the train station. I didn’t go to Starbucks because I already had my coffee. I just sat on one of the benches while waiting for the train. I wrote in my journal as I had some time to kill.
I told my therapist about how my mood has been up and down and he said that I am angry. Fuck. Really, Freud? He didn’t understand why I said that. I explained Freud theory to a therapist. How bloody wonder. If I could have thought of another therapist, I would have thrown in their names for good measure but none came to mind. I was getting annoyed and wanted the damn session to end. My feet were hurting me and I just wanted to get home. It was colder than it was on the way home. Friday is supposed to snow so I plan on wearing my warmer jacket. I have to remember to wear a lightweight shirt otherwise I will sweat to death. I see my psychiatrist, who changed the appointment time to 4 pm. I don’t know when it is going to start snowing but that isn’t a good time to be out as it is rush hour, which means no seats on the trains and buses. Even with my cane, people won’t give up their seat unless you ask them. So rude. I will give up my seat to someone who is in need even if it will hurt me later on. These young people just don’t care. I remember a time when two young ladies nearly pushed me out of the way when the train doors opened so they could get a seat. Like WTF, seriously?? I had my cane with me. I am not one for confrontation but it is just fucking rude.
Saturday I know I am going to be sleeping all day. I honestly have no idea when I am going to make these damn cookies. My therapist says there is no time limit on baking so I if I want to bake them at 6 pm, I can do it. I didn’t tell him I hate clean up and usually I hurt too much after I bake to clean up. And my mother will have a coronary if I leave them for her to wash. God forbid there should be anything in the sink when she goes to bed. I am hurting so much right now. I took another breakthrough med. I hope that is the only one I need. I have used so many this month. I am trying to hold off but with the way my appointments are this week, I don’t think I can do that. It really sucks that my pain is worse at night than during the day. I hate it.
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