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.

Night of horrible, excruciating, pain #CRPS

These are my posts I have made on social media tonight describing the infuriating pain of complex regional pain syndrome or CRPS (formerly known as RSD). One of the paragraphs is to my wonderful, understanding psychiatrist which explains the vein popping of a flare. I don’t get the normal discoloration of CRPS. I get the swelling and pain and allodynia. This is my 2nd night of not sleeping. I’ve maxed out on meds except one, ativan which I shall take shortly. Hopefully it relaxes me enough that I can lay down and sleep. I really hate nights like this but a storm is coming so will be hurting all weekend. Barometric pressure has been so up and down, I can’t keep track of it anymore. It is painful when it like this. Not only do I flare but my joints stiffen and spine aches from arthritis. No one understands the battle so I try and be as descriptive as possible so some understanding can be understood.

Was just sitting in my bed leaning back on my headboard as ankle bone pain course through every bone in my ankle. Then all of a sudden went down through all my foot bones and I started laughing. This has never happened before. One or the other but never both and I am so deliriously tired I don’t care and so I am laughing because of the pain. I’ve used more pain med this month so I got to ration what I have left. Hahahaha oh lordy. Gonna be a fun night and a storm is coming. Wonder what levels of pain that will bring??

Fucking pain. Right where it feels like a knife gutting me up my foot, veins are popping up in a group. Foot still being crushed by unknown entity. Bones hurting severely. & it is midnight. 1200 mg gaba taken. Another hour maybe a BT med. After that, who knows…

haha CRPS is driving me crazy tonight. Every bone hurt in ankle and foot. Then I have a stabbing, gutting feeling where my veins are all grouped together popping like crazy. All blue from being together. Fun fucking syndrome nothing is working. Just taking the rest of the bottle of gaba and call it a night.

Losing the battle with pain. Feel like I want to pass out and pain laughs, and goes up more or hits another area of foot or ankle or both. Nuts. Suicidal ankle pain has started. Fuck. No sleep tonight after no sleep last night. Fuck.
Pain is off its kilter tonight. 2nd night in a row. Nothing is working. Haven’t taken 2nd dose of ativan yet only because I’ve taken high doses of gabapentin. Foot is being crushed. Malleolus is being hammered. And the suicidal ankle pain has started. Veins have converged so I now have a blue tint to my skin because they are popping up. You can see every vein in my foot as to how flared it is. Haha next time i need blood drawn they can use my foot. Haha ouch.

Just a ramble about chronic pain

Never thought I would ever be on so many meds for one illness. If it was for my mental illness that would be one thing. But for chronic pain there are like 4 or 5 plus patches and gels and ointments. I’m tired of taking them when flares hit. And there is nothing I can do but let the pain be a 20/10 and hope morning comes so the hell will be over. A family member once said you are on pain medicine, why are you still in pain? Because it is not the pain it was meant to be dealt with. Nerve pain is different than physical pain. Then you have the pain go away and another pops up in another place on your fucking foot or ankle. Chronic pain sucks and need different things to keep it in check and then there is nothing to keep it in check. It just is. That is what CRPS is. Complex regional pain syndrome. So I am off taking another pill that might work. And if it doesn’t or changes to something else, go through the list. So exhausting. This is why I constantly think of death. I have no strength left

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.