Tag: chronic illness

Sunday Blog 12092021

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

Sunday Blog 12092021

I’ve had a lazy day today. I woke up in the middle of the night to pee and struggled getting back to sleep. I woke back up around 5 but for some reason I didn’t get up. I just turned over and went back to sleep. I got up at seven to have coffee and drain my bladder. I have been on a four hour schedule and it has been going pretty well so far. I have been drinking a lot because I want my veins to be good for tomorrow’s MRI. I have been having abdominal pain all day despite being good on emptying my bladder. I used a hot pack that the hospital gave me post op. It helped a little bit. I have been taking ibuprofen and Tylenol. I don’t want to take the BT med if I don’t have to.

My neighbor had a BBQ and my brother in law brought over some food. I had some pork and a potato that was very good. I love potatoes and this was like a double baked/grilled thing. It was so good. I had made a fluffernutter for dinner so I am glad I had some protein so I won’t be hungry later.

I am still having yellow discharge so I sent a message to my surgeon about it. I don’t know if this is normal or if I still have an infection. I just hope I don’t have to call because I never get anyone on the damn phone. I always get someone’s voicemail. So annoying. I haven’t been wearing boxers, just female underwear and a pad. I hope I don’t have to see the surgeon again after she said see you in four weeks. That will suck. But I don’t want this to turn into something bad either.

I shaved my head and face today. I trimmed the goatee to a stubble and then shaved around it. I also trimmed my mustache because the hairs were making my nose itch. I can forget about a thick mustache. It would be too itchy for me.

I set my alarm for 0700 tomorrow morning so I will be up in time to have coffee and breakfast before my MRI appointment. I am kind of nervous. I have to remember to take with me my meds so that I can lie on the table comfortably. Otherwise I get up and I can’t really move for a few minutes because my back hurts a lot. I just got to remember to bring water with me. I just put the meds in a travel pill box and put it in my bag so I don’t forget. Trick is going to be to remember the water. I always forget it when I leave the house.

I have ten dollars left on my T pass. I will have to put more money on it when I get paid next. Tomorrow should be my last travel day unless I need to go to the square for something. I do need to get cheese for my mother. I might get some burgers, too as I will be at the butchers. Oh and some steak! It will have to be Tuesday when I go because Monday I have therapy after my MRI and I don’t have time to shop. I need to catch the bus home. I think if I time it right, I might have therapy on my front porch. It will be a good day to sit outside some and have some fresh air. No one will bother me as it is pretty quiet.

I can’t believe how much pain I am in right now. I don’t know if it is my bowels or just the surgical area. I haven’t moved my bowels since Friday. I have been taking the Miralax but that isn’t always reliable. I didn’t take it today because I don’t want to be shitting tomorrow at unknown times. I used to be able to go in the morning soon after I wake up but that hasn’t been the case lately. I also don’t know if the pain is because of the discharge or not. I sent a message to my surgeon today to ask about it. I figure if they check the messages first thing in the morning my message will be right there for them to see. I messaged my psychiatrist but I haven’t heard back from him so I sent the same message again. I don’t see him till Oct, which really sucks. I am approaching eight weeks that I have been on Pristiq. I haven’t noticed any change with my mood. My pain has been less but that is usually the case after I have surgery. I think I have had only two flares during my recovery so far. Right now my ankle and foot is calm. Pain is like a 2 as it is throbbing just a little bit. But the nerve pain in my thigh has been horrendous. That is still ongoing. I am glad I got an MRI this quickly. I just hope I don’t have to see my neurosurgeon again. That will suck big time. I don’t really want another back surgery.

I took my meds a little while ago. I think taking them might help with the pain a little bit. I just took some BT meds because I am so uncomfortable. I hope the discharge is just leftover from the infection I had and not something new. I really don’t want to be on antibiotics again, especially that flagyl I was taking. It was horrible. I had to take it fast before it melted in my mouth with the bitterness. Yucko.

Red Sox got beat by the White Sox today in the ninth inning. I am so disappointed. We are tied for the wild card. It is our only chance of making it to the post season. We are playing Seattle next. These will be west coast games which means late starting times. I might just have to check the scores in the morning because I am not going to stay up till 2 am listening to the game.

a hot Sunday

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

A hot Sunday

It’s hot and sticky today. I’ve stayed in my room except to use the bathroom and have meals. I just finished watching the Sox blow the lead against the Jays and am not happy right now.

I woke up around 0130 to pee and was up for a bit afterwards. The sleep thing said I had five hours. This is the second time the app has shown me this and I have had to pee so I think I really need to make sure my bladder is empty before I lay down to sleep. Might not help as the body produces urine anyway but if I know my bladder is empty and I don’t drink anything then I have a possible good chance of sleeping a full night.

I only had one cup of coffee today so right now I am feeling wicked tired. I am listening to the rest of Hamilton. I started listening to it the other night but couldn’t finish it. I want to take a nap but am afraid that if I do I will wake up in the middle of the night again. I have such a headache because of the heat. I wish I could take some ibuprofen but I can’t because of surgery coming up. I am having a hysterectomy done as a gender affirming surgery. I don’t have to worry about an unexpected period or PAP smears anymore. I am having cramps today and I still don’t know if they are bladder or uterine. It bugs the crap out of me that I hurt and don’t know why. I will know soon enough.

I have a busy week this week. Most of it is getting prepped for surgery. I see the uro NP on Thursday to discuss things. I just hope post op I will be ok. I have enough caths to last me through the month should I have to cath every couple of hours until I heal inside. I have therapy tomorrow. I am kind of anxious about it because I don’t really want to talk about trauma. I have just one errand to do tomorrow and that is to pick up my meds when they are ready. They would have been ready last week but the pharmacy was short a few pills. I haven’t done any PT today. I am not feeling up to it because I got such a damn headache right now. It is taking every ounce of concentration to continue writing this blog.

I have to shower tomorrow. I should shower tonight but I think I am just going to take my night meds and sleep. Next week I will have to shower four days in a row and with the antibacterial soap as a prep for surgery. I tend to have more energy in the morning so I think I will shower then. I am listening to Taylor now. All her songs. I cannot wait for Nov 19 when Red (Taylor’s Version) is out. 30 fricken songs. Going to be amazing.

a good review

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

A review

I got this review that I found on my Amazon site the other day. It was written two years ago. Amazon doesn’t notify you when someone leaves a review. But I am happy this person left it. I sent it to my former therapist and she loved it. I sent the review to my cousin and now he wants a copy of the book, signed. I got to order more as I am running low on my copies. I think I gave away my last one. I plan on mailing it out today. It is really nice out.

I had therapy yesterday. It went ok I guess. She doesn’t think going back to school is a good idea. She gave a good example of how therapy is more than just an hour session and so is a class. You need to do the work so now I am thinking of how to do the work outside of our sessions. It bothers me that I can’t go back to college. I really would like my bachelor’s degree from UMass/Boston. I am not sure how I will pay for it but the idea that I just can’t go kills me. I know the stress will not be good for me. It is why I had to quit in 2008. I suffered a psychotic breakdown and I never recovered from it.

I am so fricken tired. I took a two hour nap and I am still fricken tired. I have no energy for anything. Wed is going to be a long day. I have an 8am appointment. I plan on shaving and showering today. I really need to wash my hair as it is very itchy.

I finally am registered for the vaccine and have an appointment Thursday. It is at the convention center in Boston. It is going to be a bit of a walk for me. I think I am going to get off at the T stop rather than walk from Copley. It is going to be 70 degrees out that day so that will be so good. I love going to the Back Bay area. I used to go to college around the corner from there.

I woke up this morning with my shoulders, neck, and ankle hurting me. I had to take a breakthrough med. I didn’t want to so early in the day but I was in so much pain. My PT is not going to be happy about this. I also took some Zanaflex to help relax the muscles. I hate that it gives me dry mouth. I have the lozenges for dry mouth. It helps a lot.

My phone is acting up today for some reason. Apps are closing while using them and I keep getting messages for other apps that something is wrong and it need to close. I’ve restarted the phone several times. There is an update that I just checked. I am installing it now so I hope that helps this issue. I also updated the PRL profile. OK, updates have been installed and I still cannot open the wordpress app. Fuck. I hope I don’t have to do a uninstall/reinstall. There is no update for the app. I don’t know what happened to my phone overnight. I really don’t want to get a new phone. I do need to take a line off my phone because I am not using it. I got to go to the store and have it removed because I tried with a chat and they are so dumb they didn’t know what I was talking about.

sneeze attack

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

Sneeze attack

I woke up this morning with a strong urge to pee around 745 so got up and did my business. I was thankful no one was in the bathroom because I don’t think I would have been able to hold it. I came back to my room and took my morning meds. I then went to lay down to go back to sleep when I got a sneeze attack. I must have sneezed like 10 times in a row. It really woke me up so I decided to have coffee. I had my belVita biscuits and my mother called them cookies. I don’t care. I have been eating them nearly every day for weeks now. I have bought different flavors and really love the Golden Oat. They keep me full for a couple of hours before lunch anyway.

Yesterday I didn’t want to do a damn thing but that was not meant to be. I had an early morning bowel accident which caused me to have to shower to get clean. I felt really bad but I just couldn’t hold it as it was such soft stool. I then was in charge of making sure my mother took her walks around the house. She didn’t no matter how much I threatened her. She had her sewing to do and that is all she did.

Today my mother is expecting the home RN and PT to come. I will stay so I know what she hears is what is said. Her blood pressure was on the low side. I hope it improves by the time the nurse gets here. I really don’t want to have her in the hospital again.

I can’t wait to get my haircut next week. The top of my head of hair is so uneven. I want to have it short and spikey. I am hoping to get my haircut after all my appointments next week. I have to go for urodynamic testing and then go for an EKG. I just messaged my psychiatrist to make sure it is ordered so there won’t be a problem. I don’t see it on my upcoming procedures.

I still have not gotten my stimulus money. I wonder if I will get it next week with my SSD payment. I can finally order my groceries from Stop and Shop. Still haven’t decided if I am going to get a new mattress or not. I bought a new foam topper and it works wonderfully. It stays on the bed like it is supposed to.

I am so tired today. All I did was have coffee. I am in pain so that is probably why. My back started hurting while I was taking my mother’s blood pressure. I can’t stand hunched over for too long. My leg is bothering right now. Damn hamstring. I wish I could find a stretch that worked for the pain. I have a couple of tennis balls under my leg right now and that seems to be helping the pain some. I can’t roll it because of the foam topper. I am just glad I have some relief. It is cold today and windy so my room is like 66 degrees. I should shut off the ceiling fan…