Sunday Blog 9 Sept 18

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.

Saturday Blog 8 Sept 18

Saturday Blog 8 Sept 18

I didn’t know if I would write a blog today. I slept kind of later than I liked so I didn’t bake. Then I had dinner at my sister’s, which was a couple hours after having breakfast. My stomach is killing me for whatever reason. My sister just used lemon on the turkey breast but I could have sworn I tasted garlic somewhere. Garlic always upsets my stomach really bad. I like the flavor but the actual clove kills me.

I wanted to read my book for an hour or two after I took my night meds but I procrastinated. I got inundated with text messages. My ex texted me. Lately she has been doing that if something has progressed with her MS. And it did, she is no longer walking. She also will be visiting Boston with her neighbor to see another friend that is doing some conference in November. I honestly do not want to see her. She is not the person I fell in love with. She had lied to me the whole time we were together so I really have no intentions of seeing her.

Sox lost. People are saying they are playing a “real” team now and that is why we are losing. I don’t understand that mentality as even when we played the O’s we lost so how does that work?? My Buckeyes won. Rutgers finally scored in the fourth quarter to avoid a shutout. This was the Buckeyes 900th win. I wish Meyer was there but rules are rules. He is currently suspended and I have no opinion on the matter so I will leave it at that.

I didn’t sleep well. I woke up around midnight because I was cold. Then I woke up four hours later because I was hot. I put the AC on 68 so I wouldn’t get cold again. By then it was too late to do anything. I will bake tomorrow! I don’t care what time, even if it is in the evening. I want some cake. I just hope the frosting comes out okay. I don’t like making frosting as I tend to fuck it up. I might make the yellow cake as well. I have a busy week ahead so I really don’t want to push myself. Last night I was really trying to avoid a flare. My ankle is kind of hurting right now but it isn’t too bad.

My BFF’s son got married last weekend and she just shared her grandsons’ pictures. OMG I just died. They are so damn cute. It melts my heart seeing them all dressed up with smiles on their faces. The bride was so beautiful. I am waiting for the rest of the pics of everyone. I really hope I can go see them one day. I think it would be awesome. I had sent the boys and their father Red Sox hats. An uncle has to do what an uncle has to do!

Feeling tired after a long day

Feeling tired after a long day

I woke up early, a few hours before my alarm because I had to move but it was not easy. I was in pain from the position I was in. I turned over carefully and slightly went to sleep, only to wake up because that position caused my elbow to hurt. I moved it to stop the hurt then my med alarm scared the shit out of me when it went off. I was not expecting it at that moment. I got up to take my meds and use the bathroom. I have no idea if I brushed my teeth or not. I was so groggy and just wanted to sleep but I had stuff to do.

I went back to my room and laid down for a bit. Then I remembered I had to do an errand for my mother and I cringed. I had to get up now if I wanted to shave my head and get ready to go out. I did and left the house around 11. I didn’t get home till around 1730, a good 6 hours or so later. I swear my ankle had gone out on me at least two times. When I got to my psych appointment, I had to take off my aircast.

The orthotist fixed my brace a little bit. He gave me some moleskins and some sticker things for the grummets so they wouldn’t cause me sores. He encouraged me to find a taller sock but I think I have a few old socks that I can just cut the foot off and use the tube part so the AFO rubs against that rather than my leg. It will add some worth in the winter months. Not so great in the heat though, should we have another heat wave burst. I had woken up with my back aching because the temp dropped like 20 points. My spine didn’t like that one bit. It is supposed to be in the 70’s the rest of the weekend and I hope I can bake.

After I saw the brace clinic, I went to get Thai food for lunch. I almost ate the whole thing. What I have left is just a snack. I thought I would eat it after my psych appointment but I was still full. My psych appointment went well, though our next appointment won’t be in a month. I am shocked. I said I can still contact you, right? She said yes. She refilled my scripts. She was worried about my weight as it was up a few pounds since last year. I am not worried because it goes up and down. I have been gaining and losing the same five pounds for years. Since the Invega I did gain a little but I seemed to have leveled off. I just haven’t been successful in losing weight, which is hard to do when you can’t walk. We talked about weight and she wanted me to get weighed the next time I see my PCP. I told her I would. I hate getting weighed. It always leads to uncomfortable conversations. I have no idea how to diet or “eat right”. A friend of mine said that I should cut carbs. I have no idea how as I eat a lot of bread. She said that instead of having two slices of toast, eat one. Being Italian, bread is like part of the 4 food groups. We have bread with almost every meal. I have been trying but it’s hard to break out of the habit, especially when my mother or sister buys bread that is fresh from the bakery. Last night I had crackers with cheese. Crackers are carbs. So see, I got a carb problem, but the human body needs carbs so…I am stuck with weight.

I asked my psych if I could go ahead with the transition now that my pain is somewhat controlled. It might not be what I want it to be but it is better. I just wish the flares and ankle give outs would stop. So Monday I will be calling the LGBT clinic and making an appointment with the doc I was seeing there. I just hope they have an appointment that isn’t in Nov. I don’t think I can wait that long, again.

Hot and humid and feeling exhaustipated

Hot and humid and feeling exhaustipated

(note, I “stole” pic from twitter so might be taken down)

I thought the weather was going to be cooler, but I guess maybe tomorrow that starts. I had a rough time getting up. I woke up before my med alarm and I had all the intention of taking my meds but I didn’t until two hours later. I got up after I took them. My legs felt like jelly and within a few minutes, my back was cramping from standing. This didn’t bode well. I left my room to enter a steaming oven. This wore me out even before I got to the bottom of the stairs. I figure I would shave and shower. This took so much energy. My back get cramping and I was grateful the seat in the shower was for that, sitting, not a storage for shower things. I had to sit at least three times. Then one more after I dried off. I didn’t bother with clothes as it was too hot and I was sweating by the time I got back to my cold room.

I didn’t have too much time to rest on my bed. I cooled off as much as I could in the time I had. Then I got dressed. I had no idea what to wear. I couldn’t find the shorts I wanted to wear and what I wanted to wear needed to be washed. That sucked because my mother just did laundry yesterday. I would have to wait till the hamper was full again. I had spiked my hair after I showered because I wanted to see what it looked like. It was too short but doable. It looked ok. I used a cream thing rather than gel. Gel probably would have been better. I will use that for the wedding next week. I gathered my stuff and then went downstairs. I put on my socks and the brace for the sprain. Then went to the kitchen to get my cup and my mother needed something mailed. I didn’t want to go out. But I did anyways.

The bus was fricken late. I didn’t get to Starbucks until 1220. The bus left the station at 1137 and came around noon. It didn’t leave me much time to eat and write. I actually didn’t write as all. By the time I was done eating and catching up on social media and the game (Sox were playing at noon), it was time to go. I left for the train and my legs just did not want to move. I labored to the station. My hip felt like it was frozen. The heat was unbearable. I was just miserable. The stuffiness inside the station didn’t help. I rested for a bit before the next train came. I thought there was some kind of delay as the time thing said the train was “stopped.” Then the announcement came over saying the train was “one stop away.” That was new. No idea when the bozos came up with that junk. Kind of freaked me out a little thinking I would be late for my appointment even though I left early. I got off at my stop and waited for the bus that would take me to my therapist’s office. It is a 10 minute walk but in the heat and to conserve energy, I just been taking the bus, which is two stops away.

Therapy went well. I need to “be more angry”. I laughed. It just seemed really funny because it was so damn obvious. I don’t show my anger that often and when I do, I often cry because it scares me or I am too frustrated and angry and I just sob and shake. We ended up talking about the one time I beat my sister up and then I basically shoved my feelings up, never to be seen again. I know I fell into a depression but I couldn’t be beating someone up when I got bad. I felt horrible that I hurt my sister. I felt like a monster. I left the house that day and didn’t want to return. I hid at my solace place. I remember my friend and other sister were looking for me. I just hid. I didn’t care about going home. Home life sucked and I didn’t care. I just resolved never to show feelings again. Hence why I am in therapy and I have a disconnect.

I left his office and couldn’t walk back to the station. I waited for the bus. I had to walk to the elevator, which was kind of hard. I really had to hit the button a few times because it just wasn’t working. I didn’t want to go down the stairs. It is hard with two braces on. With the extra time that I took with taking the bus back, I didn’t think I would catch the bus home. Luckily, the bus was a few minutes late. I went to the pharmacy to pick up my scripts. I thought I was going to die. There was an elderly couple in front of me and they were taking forever and another customer waiting. My back was killing me. When I got my things, I had to take a rest at the bus stop for a few minutes. I was dying from the heat and knew it was only going to be worse when I got in my house. I got the mail and it was hotter than hell in the house. I just wanted to be with my AC. My sister had some salad and spinach thing but I wasn’t hungry. I just dropped my things and went to my room to turn on the AC. I then ate once I was cold.

I hope I don’t have pain tonight. I put on a lido patch on my thigh as a preventative. I put diclofenac on last night. It helped some as well. Nice to know I have a few things to use. I can alternate. I am so tired. But I saw this pup with his head tilted and my heart melted. Puppeh, you can have whatever you desire, LOL (I know I have a blind follower, I don’t know what kind of doggie he/she is, maybe an English bulldog, brown with a black snout and pointed ears) I am a sucker for head tilts…

Buses, voting, and feeling accomplished

Buses, voting, and feeling accomplished

I woke up about quarter to seven. I wanted to sleep so I fudged the med alarm so it wouldn’t go off. I took my meds. But I had a hard time falling back to sleep. I was feeling edgy. I had to make three phone calls and then go out to vote. I gave up trying to sleep around 9 and made my phone calls. None were able to do what I wanted. I am still waiting for a callback but I doubt I will receive it. I played with my phone for a bit and then got dressed to go to the Square. The bus came and I placed the order for my sandwich. I also ordered a donut because I haven’t had one in a while. When I got to Starbucks, I ordered my espresso as I had my cup. There is a barista there that is not nice and is always curt with me. I don’t know why. I just reply with kindness and thank yous. What else are you going to do when someone is being a bitch to you?

I had my breakfast and then wrote for a bit. I checked the bus schedules so I wasn’t stuck. I needed to take the bus down the street. Then one that went to the polls. It gave me about 45 minutes to an hour to write, which was plenty of time. I realized while I was writing, I should have typed up what I wrote in my notebook on the two things I have written. I might do it later, if I feel up to it. I need to put the notebook back in my bag as that is my “essay” notebook. It just writing that I write that eventually gets translated to blogs or letters to someone. Or just writing down my thoughts that are not journal related. Around 11, I left for the bus depot to begin the trek around town.

I got to my first stop ok. And the second bus came not too long after. I was glad. There was hardly anyone at the polls and I didn’t like the candidates. No one was running against anyone else hardly. I thought there would be questions on the ballot but there weren’t so I guess that will be the November election. I got my sticker and then went to the bus stop. That bus took forever. My app said it would be coming in 12 minutes, then it said 26 minutes. I have no idea how accurate this app is. I saw it in an article that it was supposed to be reliable than other apps but how could it go from 12 minutes to 26 and no bus had showed up?? There was no place to sit so I stood the whole time waiting. I wanted to catch the connecting bus home, which was at 1145. Around 1150, the bus came to take me down the street for the bus home. I didn’t get a monthly pass so was using money for all these buses. I thought transfers were free but I guess it is now 25 cents, which sucks. My mother wanted me to get the Walgreens flyer so I stopped there before going home.

My feet were killing me and I was sweating as it was so hot and humid. The house was worse. I think I sweated more when I was in the house than outside. I gave my mother the flyer and then went up to my room. It was around noon so only took me around 2 and a half hours being out. I had the AC going in my room so it would stay cool. I am fricken exhausted. I had to have lunch but it wasn’t happening until I cooled off. I thought about taking a nap but I couldn’t really as I was hungry. I had lunch and now I am thinking about a nap. I don’t know if I will sleep as my ankle is hurting me.

I am just going to chill the rest of the day until the Sox game. I might try and read a few chapters of Poe. Book was killing me last night. It kept throwing curves and I couldn’t put it down, even though I was so fricken tired. Then when I did, my damn leg jerked, causing my quad muscle to hurt really bad. I emailed my neuro to see if I could get lidocaine patches. I need something as massaging is not working. I emailed my PT the same thing. I have to send her another email because the pain program wasn’t able to do anything about my evals (one of the 3 phone calls today). I figure I let her know so maybe she can do something. I frankly don’t care either way as I just want it out of the way so I can say, ya, I did this and still hurt so can my dose be increased to the pain doc. I fucking hate him. He just annoys me because he doesn’t listen to me, at all. He also doesn’t think I have CRPS. I just want to smack him but assault charges aren’t worth it.