thought today would be a low pain day, wrong!

Thought today would be a low pain day, wrong!

I slept through the night for the first time in months. I woke up around 0630 just to use the bathroom. I wasn’t in that much pain. I was hungry though as all I had to eat yesterday was a turkey and cheese roll up. I couldn’t go back to sleep so I went out after I paid a few bills and ordered my groceries.

I wanted to leave after I had my breakfast but I also wanted some more turkey breast as I used the last of it yesterday. I had a few minutes before the next bus so went to the grocery store. I thought I said turkey breast but when I rang it up, it said ham. I had to go back to the deli counter. By then I had missed the bus so I got another bus to take me down the street to take me home.

I had some scripts at Walgreens to pick up and I also wanted to get a foot cushion for my AFO. My foot was starting to hurt but it wasn’t too bad. As soon as I got to the street and a few steps beyond Walgreens, my ankle gave out. I was in severe pain. Fuck. I had a block to walk before I reached home. I was not happy. I basically tried walking without putting weight on my ankle. It was tough. I had taken my pain meds before I left the house so I needed to take the strong pain meds to settle down. Now I am bedridden the rest of the day. I just hurt so bad.

I had to restart my laptop as it was slow and the screen was getting glitchy. I need to have it replaced. I don’t know if my laptop is slow because of it being old or what. When I get the screen replace, I’ll have my friend take a look. Maybe I need more RAM or something. It seems to be fine now but that can change.

I finally finished the antibiotics today. I hate taking meds three times a day. It sucks! My gums still hurt and are still swollen. I am finally able to eat on that side without too much trouble though with the swelling, it always feels like there is something stuck there.

I was reading an article on CRPS that was written in Australia. They call this the “suicide disease” because it is so painful. I believe it. More than a few times, I have thought and planned to end my life because of the pain. I seriously am thinking of getting my medical records from my neuro so see what she wrote for yesterday’s visit. It’s kind of a blur to me and it’s still not clear if I have CRPS or she was diagnosing me with small fiber neuropathy. I was so sleepy that I just didn’t have her full attention. I do know it pissed me off that she didn’t exam my foot/ankle because I had the damn AFO on. Jerk. I guess I need to wait until Oct to get a clear cut answer, I hope. All this rift raft is driving me crazy. And in the meantime, I am in horrendous pain that makes me want to die and feel useless.

a day of traveling for nothing

A day of traveling for nothing

I got a few hours sleep. Pain kept me up most of the night. There was nothing I could do about it. The more I stressed about not waking up around 7, the worst my sleep got. I couldn’t settle down. I had my mother wake me around 7 but I didn’t want to budge so slept till my alarm went off. I had wanted to make breakfast and coffee but I only made coffee. Around 8, I left the house.

The green line that I had to take was having track diversions so I had to take a bus to get to where I was going. I thought if I took another bus, I would miss it but that didn’t turn out to be the case. It took me around 2 hours to get to my neurologist’s office. It was very humid and hot. I hated it. I mostly slept on the bus and trains. My pain was bad so when I got to the office, I took some pain meds.

My neurologist is never on time. I must have met with her for at least twenty minutes. Even though she said that I had complex regional pain syndrome, she kept on calling it small nerve fiber neuropathy. I was so tired I didn’t get mad until I left the office. She had no new hope for me. I told her to send her notes in triplicate to my PCP so he would stop sending me to new docs. She said I was a trooper and something else. Then she gave me an appt in a year’s time. Appointment was over with. I was stunned. I was too disgusted to think. I had spent two hours to see this doc only for her to basically tell me nothing and see you in a year. She didn’t even exam my injured foot because it was in the AFO. Asshole. I don’t think I will go back to seeing her. But the thing is, my PCP’s office is reluctant to prescribe Neurontin so I need to see her so I can get that script. Fucking ridiculous. I am so fed up. I swear if the new neuro treats me this way as well, I am going to go nuts.

I walked back to the station and waited for the shuttle bus to bring me to the trains. By that point, my foot was berserk. I was in more pain than ever. I thought about going to Starbucks for something to eat but knew I couldn’t walk there. I just waited for the bus home when I got to the Square, 2 hours later.

I had something to eat when I came home. My foot pain was killing me. I just want to eat and then take a nap. I also took more pain meds. I put my phone on do not disturb and slept. I am glad I did because I had two phone calls that I missed. I would have been pissed if they woke me up. Now I just took my night meds and something to move my bowels. I haven’t gone since last week.

Eclipse 2017

Eclipse 2017

My sister was in the path of the eclipse as she was down in South Carolina. She got really cool photos, which were similar to those on Facebook and Twitter. I was in Starbucks and didn’t care much for it as there was overcast. I saw some guy in the foyer outside with the special glasses and did see things go dark for a little bit and then bright again. I stayed where I was inside the store.

I wrote in my journal as I was having my espresso. I didn’t leave as late as I wanted to as I got up around noon time. I caught the 1300 bus, which had some kind of idling or brake problem as it was making awful noises at each stop or red light. I had bumped into a family member while waiting for the bus. They are still contemplating therapy but is scared of being put in the hospital for “being crazy”. As much as I have tried to reassure this person that will not happen unless they are a threat to themselves or others, I still am not getting through. It hurts me so bad to see them suffering so much.

After I couldn’t write anymore in my journal and saw the loads of pics of the eclipse on Facebook and those my sister sent me, it was time to catch the train to see my therapist. He didn’t pick his nails as much today and was attentive to what I was saying. It kind of freaked me out a little because I was getting used to him being silent all the time. In the beginning of session, I had to hold back laughter as he was wearing cranberry pants. It looked totally ridiculous but whatever. Who am I to judge?

My ankle was getting sore on the way home. I caught the first train that came to the station and luckily, the bus had just pulled up. I didn’t have to wait for the 1730 one. I was looking forward to chicken cutlets but when I came home, I smelled stir fry. I was totally disappointed. I was a sweating mess and had to change. I made a dish and had supper. Then I took a much needed shower. I had wet myself and needed new underwear. I drank a lot of water when I came home as I was really thirsty and didn’t feel like making iced tea like I usually do. I’ll probably have to use the bathroom soon as water just goes right through me for some reason.

After the shower, my ankle was cramping on me while I was drying off. I was due my next dose of pain meds so I took them when I came to my room. Now an hour later, my ankle bone is being tortured. I fucking hate this shit. I need to be up in 12 hours, I’ll be lucky to get to sleep tonight. I’m glad I took a shower so I don’t need to in the morning as I have a feeling it is going to be rushed. I need to catch the bus in the opposite direction I usually take as I got to go to another train station to see my neurologist. It’s an appointment that I need to go to only for her to email my docs about her diagnosis of CRPS. I want her to do it in triplicate for my PCP so I don’t have to go to anymore new docs. I am just seeing the specialist and hopefully he won’t recommend me seeing anyone else because I’ve had it with the profession, except for my psychiatrist of course. I took a strong pain pill. Lord only knows when I will have a bowel movement. I thought it was going to be today but nothing so far. I really hope I don’t get hit tomorrow while I am out and about. I am about an hour and half away from home, 45 mins of which I am on a train the whole time. Just makes me nervous because my bowels can be unpredictable at times and when I need to go, I need to go NOW, there is no holding it in because of my nerve injury. I haven’t taken stuff to go because I am out and about. It is going to suck so bad when I do go. I am not looking forward to it.

no coffee for me!

No coffee for me!

I woke up around 1400. I didn’t get to sleep until 0700. It was a long night. I wanted coffee badly but my half and half went bad. I was too tired to go to the store to buy more and then make another cup. So I am not having coffee and I am very unhappy about it. I’ll go tomorrow to buy more.

I had a sound sleep though for some reason, my head likes to find the space between my two pillows, causing my neck to ache. I probably would still be sleeping if my bladder didn’t wake me up. I am glad I put my phone on “do not disturb” as I had a few messages and one missed phone call. I still am sleepy. I just had lunch and breakfast. I was hungry. I made a turkey, cheese, and cranberry sauce roll up and then had a couple of boiled eggs with toast.

I’ve only been awake for a few hours and already my ankle is killing me from making myself something to eat. FUCK. I took pain meds when I woke up as my mouth was hurting. Now my ankle is exploding. I am going back to bed. Hope I can sleep.