why do I bother??

Why do I bother

I had a hard time sleeping due to pain. When it sort of settled down after I wrote my 3 am blog, I was hungry. I didn’t dare go downstairs to get something to eat for fear of flaring it up again. I finally fell asleep some time around 4 and woke up four hours later. I took my blood pressure pill and pain meds as my ankle was killing me. Then my alarm went off. I had time to shower. It was painful but I did it. It was still muggy in the house. Despite cooling off some, I was sweating by the time I went back up to my room.

I tried to cool off but there was no point. I didn’t have AC, just the ceiling fan blowing hot air. I got dressed and then left for the bus stop. It was cloudy and when I got to Starbucks, it had started to drizzle. I was hoping it would cool things off but it didn’t. When I was done at Starbucks, the sun was shining. I went to CVS to get my mother a card for Mother’s Day and some tape that she wants. I had already bought her a few things. The tape is kind of a gag gift.

I went into town and got new glasses. The guy said it would be three weeks for them to come in. Great. I am already struggling to read as it is. What is another three weeks. I was early for my pain doc appointment. I went to the lobby of the building and just wrote in my journal. I was nervous about my appointment. I went upstairs 15 minutes before. I was called in by the medical assistant to do vital signs. My blood pressure was a little high. Then a new fellow came in and I had to tell him my story again. He went to get the attending and it was a long time I had to wait. Finally they both came in and the attending said that he decided to put me on a different pain med regimen and he emailed my PCP about it. So he will decide either yes or no. I have no way of knowing if it is a no because I wasn’t in the email. I am once again out of the loop while these doctors decide what is in my interest. I have to wait, again, for their decision. I was not happy. The med is something that I told him shuts off my bladder but he said that only happens with patients with neurogenic bladder. I told him I HAVE neurogenic bladder but I was dismissed. Okay, when I am in the ER because I can’t pee, I guess they will switch me to something else and take four months to decide what to put me on while I suffer.

I was too annoyed to email my psychiatrist to let her know how the appt went. I went to Chipotle when I got to the Square and timed it right to catch the bus home. I was sweating so bad. I ate my burrito while my mother was talking about her bills and the amount she has to pay. I could care less. My sneakers had arrived and my new pajamas pants. I will get them washed. I am still waiting for the shorts. They will arrive Monday. After I ate, I felt a little better. I was less grumpy. I emailed my psych telling her I felt like a pinball and that nothing new happened other than I need to wait, again. She asked what had happened so I told her.

I got really sleepy after I put in the new shoelace thingy for my sneakers. It took me a while to figure out how it was supposed to be. The diagram was not the best. It kind of made the sneaker tight but it should loosen, I hope. I kept the laces just in case I don’t like it. I don’t know if I can put my AFO in the sneaker with these thingys. I will find out on Monday.

berserk foot, no sleep

Berserk foot no sleep

(pic is of Mass. General Hospital taken in 1858)
I was lying down all propped up on my pillows, lying on my back all comfy. I was ready to snooze but my damn fucking foot went berserk and my pain spiked to a 13. I am still hurting. I just took my pain meds so I am giving it a little more time before I take another strong pain pill. It is so hot in my room and I am sure my chocolate has melted. I have morsels in my room. It is dark chocolate, my favorite kind.

I am hungry but I can’t stand on my foot right now. That would be murder. I wish I had a protein bar or something like that in my room that isn’t too crumbly. I don’t want crumbs on my bed. I really can’t wait for the temps to be in the 60’s without the damn humidity. I really hate the heat.

I had put a sock on my foot as the ceiling fan air was bothering it. Now the sock is bothering me. I can’t fricken win. I am so tired and I know I am going to feel like shit later today. I probably am not going to get new glasses as I will be so tired. It’s almost 3 am. I hate that hour as it then becomes a guessing game as to when I will fall asleep. I hope my mother doesn’t want to wear her socks tomorrow. I would hate to only get 2 or 3 hours of sleep. I put on the white noise machine. It is making me so sleepy but pain is keeping me up. I hate nights like this.

I met a few chronic pain people on twitter yesterday. I was chatting with one of them. I told her I had cauda equina syndrome and she was joking about how a horse stomped on my foot, causing me my pain. Her autocorrect did something to the spelling so she had to explain it as the tweets didn’t make sense. I noticed tonight that my left foot is getting smaller than my right, when it isn’t swollen. I am losing muscle, which isn’t good and probably what is causing me pain. I don’t know if it is the CRPS or nerve damage. Thing is I am using my foot/ankle so I don’t know why my muscles are wasting. So damn frustrating. I think I need to see the new neuro to see what he thinks. I hope I don’t have to go to PT to try and fix it. It will be painful, more than what it is now.

I think I will use the diclofenac gel on the top of my foot. Some times it works to lower my pain. Not all of it but just enough so I can bear it. I sometimes will use lidocaine but I think the diclofenac will work better as it might lower the swelling. I really don’t know if it will help unless I try. Maybe then my meds will have kicked in and I can go to sleep.

Warm Wednesday finally

Warm Wednesday Finally

The temps in Boston were higher than Dallas and Miami, which is unusual. Last night it was 61 when I finally when to bed sometime around 3 I think. I was in a bad flare. I ended up going on a shopping spree. I wanted to buy more pajama pants and some shorts for the summer. I still need to buy some jean shorts as I only have one pair. I have a cargo shorts but they are getting worn. I haven’t really bought clothes since I went on disability six years ago. I also bought a couple pairs of sneakers has it has been as long since I bought them. They will last. I bought two kinds, one with laces and one with Velcro. I think the Velcro will be easier with the AFO. If not, I will have a spare pair.

My med alarm scared me. I took my BP pill and then went back to sleep only to wake up scared again with my alarm to get up for my groceries. I wanted to make pancakes but I wasn’t hungry or motivated to. I made coffee. It was good with the sweet cream. I didn’t use any sugar, which is good because it would have been too sweet. I only had half a cup. I realize I like the taste more than I like drinking it. I had a pop tart and then waited for my groceries. They were running late and when the driver came he was a wreck. He was driving all over the place and I guess the customers were not happy about late deliveries.

I put the stuff away and then made lunch. I bought Brie cheese and didn’t realize you had to keep it out a while for it to be soft. I had put it in the fridge as I didn’t know this until I was making my lunch. I put too much so it was filling. I will leave it out next time so it will be softer to spread. I still enjoyed the sandwich. Maple turkey breast, Brie, and cranberry sauce in a tortilla wrap. So good.

Afterwards, I was so damn tired I took a nap. A friend called me around 1630. I just let the phone ring. I didn’t want to get up. But then my bladder said I had to so as I stretched, my foot fricken cramped! OMG, not good! I was in so much pain. It finally settled down on its own. I had trouble walking and hope the cramp didn’t cause any damage. That is all I need. I had dinner and then just played on my phone for a bit. I am really tired so I hope I sleep tonight. My foot is still hurting a lot. It’s always a question of whether it is going to keep me up or not. I am hoping now. But it is also hot in my room so who knows. There will be thunderstorms tomorrow afternoon/evening. Always happens when the weather is warm.

going out fail

Going out fail

I woke up around 9. I had about 6 hours of sleep so that was good. I was feeling okay so decided I would go out. I showered and brushed my teeth. My mother was going over my aunt’s because she was going to Walgreens with her. I am glad she is going out. She needs to as I am sure being stuck in the house sucks every day.

I had taken my phone off the charger when it was fully charged last night and I was at less than 50% because I had messages. I hate when that happens. I put it on the charger after I took my shower for a little bit. I had an extra power cord so I could charge it when I got to Starbucks. I got dressed, grabbed my cup, and left for the bus stop.

When I got to the Square and started towards Starbucks, my ankle started hurting. It was crowded in the store but I found a seat. I got my breakfast and espresso. The pain didn’t get better so after I finished eating, I decided to check the strawberries at the grocery store then go home. I missed the bus and the next the one wasn’t for another half hour so I had some time to kill. The strawberries were expensive. I got a wrap for lunch and then went to see my barber to see if he had my dish. He didn’t have customers so went to his house to get the dish. I waited and met the fill in guy. He seemed nice. My barber came back and I gave him my number so he could call when he wanted the casserole again. He said thanks and I went to the bus stop. My ankle was really smarting. I could barely walk home. I struggled up the stairs and was saying to myself that this story is never going to get written. I was feeling hopeless again because pain has taken so much from me. Now it’s affecting my writing (not blog related). Just sucks because I really like writing and I know this story will be good if it ever gets out of my head. Maybe I can use this POS to write it out when I get the chance.

I threw caution to the wind last night and bought a new laptop. It was within my price range, has 8 GB RAM and a 1TB hard drive or SSD, whatever you want to call it. It comes in on Friday and I also ordered Office 2016. It takes a little getting used to but I like it and think I have figured it out. It is similar to 2013, which was what I had before, but the saving of a document or other files is different. I think it has too many clicks. The new laptop weighs about 5 pounds, which isn’t too bad. This POS weighs around 2 and is really light. I am kind of worried with the delivery as I am not going to be home but soon as the shipper gets it, I am going to see if they can change the time/date so I will be home.

My lower leg is throbbing so bad. I am listening to Cam to try and distract. I am going to have my lunch pretty soon. My mother is making pork chops for dinner. I am not crazy about it. Last time they tasted funny. I didn’t get sick so I guess it was just the taste of the pork.