Finally some concrete answers

Finally some concrete answers!!

Before going to bed last night, I emailed my neurologist that I went for the bone scan so that he would know and then get back to me about what the treatment was going to be moving forward. Late this morning he responded and said the scan showed I did have some bone changes and clinically I do have CRPS (Complex Regional Pain Syndrome). He wanted me to go on some anti-convulsant but I briefly looked into it and it has a lot of nasty side effects, which doesn’t appeal to me. He is going to discuss it with my psychiatrist and see what she has to say. I emailed her to tell her he would be in touch but I am not thrilled to go on this medication. It’s new and most likely will cost me some big bucks come the new year. But we’ll see. I finally have a concrete diagnosis.

This morning was a fucking joke. My alarm went off and I should have put it on snooze but I turned it off. Unfortunately, I went back to sleep for an hour, waking up to some text messages. I had just enough time to try and catch the 7 am bus but just as I was approaching the corner, it drove by. I had to wait for the next one at 0725 but it never showed up. It was freezing out and I didn’t wear my jacket. By the time the bus to the Square came, I was running late to see my psychiatrist. I just ordered espresso from Starbucks and a donut and then made my way to the train station. I got to the Station when my psych called me to say she was stuck in traffic on the highway. She hasn’t moved in at least 10 minutes. Yikes! We rescheduled and I caught the bus home, with the intention of going back to bed.

It was really cold in my room so I shut the window part that I opened. I took my pain and blood pressure meds. I also started with the new weight loss pill. I plan on taking it in the morning in case it makes me jittery. I tried going to sleep but I couldn’t so I played with my phone. I decided to take the AC out of the window and then try again for sleep. I opened the window to take the AC out and it almost fell out! Crap! I couldn’t lift it to bring it inside. Somehow I did, at the cost of breaking my screen. It flew out of the window but that can be easily replaced. If the AC fell, it would have wrecked the roof and porch below. I went downstairs to retrieve the screen outside. I also told my mother what happened and that I finally have a diagnosis.

I played with my phone some more and then I was getting sleepy so laid down. I don’t know what the fuck I did but my ankle didn’t like it. I screamed. Then I turned over to take the strong pain meds and it hurt more. I was in complete agony. It was easily a 14/10. I just wanted to die. I started getting a pain anxiety and feeling like I couldn’t breathe. I took my meds and an Ativan. I tried distraction but it was so hard. I just laid there moaning. Then my mother called to ask if I could go downstairs to bring up her gallon of wine. I told her I was in a flare and couldn’t move. Someone stole it by the time she came home. I feel bad.

Finally the meds kicked in and I was able to sleep for a few hours. I felt better but I was still in a lot of pain, not as much as I was but say a 10 instead of a 14. I had to use the bathroom so had to get up. That was torture. I used the cane to get around because I didn’t have time to put the boot on. It was really hot in my room as my mother turned up the heat. I was sweating. She was making dinner so I had something to eat and then I went back up to my room with the mail. When I came up to my room, I opened the window and turned on the ceiling fan. The ceiling fan started making some noises that were annoying me so I turned it off. I asked my brother in law to come look at it when he got home from work. I hope it’s fixable. I also asked my mother to lower the heat. Hopefully my room cools down. I fucking hate the heat!!! And my room has two settings, unbearably hot and freezing cold. I rather be cold because I can put on layers and snuggle under the blanket.

four hour test and a flare up

Four hour test and a flare up

I didn’t sleep very well last night. My alarm went off after I finally settled down. Think I might have gotten an hour and half. I took a shower and then it was time to get ready to catch the bus that never came. I had to take a different bus that went farther than the Square. Once I got off that bus, I ordered my Starbucks as I waited for another bus to take me to the Square. I quickly had my breakfast and took the espresso with me as I was now running late. I hoped there was no delays on the train and there wasn’t. I made it with 10 minutes to spare.

The first part of the scan was to inject me with the radioactive stuff and then take like 4 minutes of scans. Then I had to wait 2 hours to finish the rest of it. I was hurting for the positioning of my foot but it wasn’t too bad. I went to the café and met up with a friend of mine. We talked until he had to leave. I also went to see my former coworkers in the lab. There were only a few people I recognized and talked to. Everyone else was new.

While in the café, I got a cup of tea and then wrote in my journal. I was so tired and wanted to sleep but I just couldn’t nap. I went back to radiology a few minutes before I was supposed to and waited in the waiting room. They called me back and we went to a different room. It was cold and my foot immediately didn’t like it. It was the same positions as before but for about 10 minutes or so per scan. One of the scans, the tech put a rubber band on my feet. It irritated my foot. By the time we were done, I was flared up. I wish I could have had a ride home. The tech said results would be available this afternoon but I haven’t received notification of them yet.

I slowly walked to the train station. By the time I got there, my ankle was really hurting and my foot felt like ice. I took a strong pain pill that I had with me. The train was there when I got to the platform but it was delayed. We sat for a bit. I didn’t care as long as I didn’t miss the bus home, which would come in about 40 minutes, or so I thought. As I reached the Square, I got a text saying the bus was having moderate delays. Great. By this time, my foot bones were killing me and I just wanted to crash. Finally the bus came. I went to Walgreens to buy something for my mother and then came home. My ankle bone hurt. I was in so much damn pain I knew I wasn’t going to sleep. I was hungry but all that I wanted was my mother’s brownies.

I had two brownies and then went upstairs to change into my PJs and thermal socks. While taking off the sock on my bad foot, it flared up more. I was in pure agony. Half my ankle and foot were in 12/10 pain. I took my regular pain meds. Then after a couple hours, I took another strong pain pill and Ativan as I was getting anxious from the pain. I still haven’t heard anything about my scan. It could take up to 24 hours for radiology results to be put online. I care but don’t at this point as I just want to see my pillow.

The insurance card I was waiting for came in the mail today so I can change my name at the hospital I have my care. YAHOO! I’ll go to registration tomorrow after my psych appt, I might go before hand depending on what time they open. I just checked my prescription card and the updated name has happened. YAY! Progress. Now I just need to update it at the pharmacy. I hope I don’t need all new prescriptions in my new name. That will suck. Only thing I need next week will be my Ativan, and by then, my license will be changed to my new name. It won’t be a laminated card as I will have a temporary one. I just hope the gender marker doesn’t cause a hubbub. I really don’t want hassles.

OK, Pain is at a new level. Didn’t think that would be possible. I need to lie down. Until tomorrow!

Painsomnia 

I was pushing for 0200 to go to sleep but i had to pee and then brush my teeth as my mouth felt yucky.  I haven’t brushed in two days so i really needed to get rid of the yuck.

Pain has been keeping me up. Started with my metatarsals and then moved up to my ankle bones. I took extra meds and 1200 mg of neurontin. It hurt so bad, not as bad as it was last week. I figure I would write as sleep isn’t coming just yet. I am really tired. I’ve been playing with my phone. Making grocery lists for tomorrow, making a coping plan on one of the apps I downloaded. Dr. Jobes is supposed to come out with a mobile app. I can’t wait.

I’ve been fighting the suicidal urges. I can’t help it as I feel so rotten and hopeless. Pain is really bringing me down. I’ve posted my distress on Twitter but no one has said anything. 

I printed put the RMV forms for name change and stuff. I don’t need a letter from my doc to give to them. I do need to being some bank statements and stuff to prove who I am. Which reminds me, I nees to call the cable company to change my name. I hope I can do it online. To change everything on my license will be about $75, I think. 

I still need to call HR at my work place to find put when I will be getting an updated insurance card. I just need the one for prescriptions so i can change it at the pharmacy. So many things needing changing.

Dammit, my bone pain in my foot is back. I’m not going to sleep tonight. Ao much for wanting to do one errand later today. Maybe I will in the late afternoon. 

I am ordering some stuff from Amazon. I saw a body pillow that converts into a nice back pillow and arm rest so you can read. It is $60. Hope it is worth it. I’ll get it next week, hopefully. My online grocery order keeps going up and down. I order stuff then take it off. I really want to make a spinach, egg, cheese, and bacon sandwich or burrito. I still haven’t made a burrito since I’ve been home from the hospital. I jist have been in too much pain to cook.

Painsomnia is the worst. My foot feels so awful right now and i can’t take anymore meds. I am going to try and sleep now and see if I will be successful. Wish me luck!

Black Daily Word Prompt 12 Nov

Black (Daily Word Prompt 12-Nov)

I love the song Black by Pearl Jam so the Word Prompt was perfect.

I woke up early after going to bed late due to pain. I slept until around 2 when I went back to sleep. I didn’t feel like going out to do one errand. I’ll do it tomorrow. I thought I had PT but it’s not on my appointment list. No point in showing up just for them to tell me to go home. I cancelled next week because I got to go to the Registry to renew my license and change my gender. I’ll write up a letter and send it to my psychiatrist for her to sign. I’ll bring a copy of it just in case it gets lost in her email. I’ve been getting conflicting information so I’ll have both with me plus the legal document for the name change. I don’t have my gender changed on my birth certificate. That you can only do once you are surgically altered to be the sex you want to be. It also cost money, which I don’t have. When I have the top surgery, then I will worry about it.

I got a call from radiology for my bone scan. It was to remind me I have an appointment Thursday and also that the test takes fricken 5 hours. I’ll be bringing my Kindle and maybe a book. Hopefully I can go to Starbucks for coffee. It’s going to be a long day. I then have to see my psychiatrist the next day, early in the morning. I will have everything in my bag so I don’t forget anything as I won’t be coherent enough to remember shit at that hour.

Foot is acting up. I hate it when my bones hurt. That is worse than my “regular” pain. It’s harder to treat because it is so severe. Luckily, I am due for my pain meds so I just took them. If not, I will take the strong pain pill. Juggling these meds is a joke. Last night my foot and ankle were lighting up like a Christmas tree so I was up half the night. Going to be interesting to see when I have the sleep study if I will be able to sleep and if not, take my pain meds if I am in a flare. I’ll bring them with me, just in case. Night time is always bad for me. I just hope I can get a ride there so I don’t have to walk from the T station. It’s farther walk than the hospital I get my care at.

My UK royalties came in today, after waiting all year. A whopping $9. I can get a sandwich and a coffee at Starbucks, lol. I like that I am an international author but the payments for royalties other than USD takes forever to process because they have to be in USD or the bank rejects the deposit. There is nothing I can do about it as it is a foreign currency issue.

Tomorrow I need to go to the grocery store as fresh cranberries are on sale. I want to make my Nantucket cranberry cake for Thanksgiving next week. I want to make a gluten free one for my sister’s mother in law as she has celiac. Hopefully it will come out okay. I’ll use the throw away pans that I bought. My mother wants me to buy some bacon as well as it is on sale. That is the only time my mother buys bacon. She likes the hickory smoked kind and I like the maple, though I really don’t care. Bacon is bacon. She will eat it as well.

Last night I was scrolling through Instagram and an ad popped up for some weight loss thing. It was a free trial so I am going to try it and see if I can lose some weight. You take it once a day, though I am not sure if it is a powder or a pill. I’m kind of stuck in that I can’t exercise so if this works and I lose at least 20 pounds or more, I will be happy. I just hope I don’t lose my kidneys or liver in the process. That is always my fear with these diet things. They say that it was on Dr. Oz so I am going with that.