Blogging from phone: hectic day

My grocery delivery was late. I hate a 10-12 slot and it didn’t come till after 12. I quickly put away my stuff. I had 4 large cookies to finish off the batch I made a couple days ago. I will be making another batch this weekend as I got the flaxseed meal.

I sat on my bed for 10 minutes figuring out the bus schedule and time it would take to get dressed, do an errand, and then wait for the bus. I really didn’t want to go out. But I needed to pick up my scripts and get my blood drawn. Off I went.

I didn’t being my bag with me. I just grabbed my coat and scarf as it was cold out. I had coffee at home so I wasn’t going to Starbucks. Bus came like 20 minutes minutes while I was waiting. I was already exhausted. I got to the hospital and went to my pcp’s office. Then I went to the blood lab. My doc didn’t put in the order. I had to wait an hour for all to be done. I got a new phlebotomist who was afraid to draw me so another guy that I knew did it. Ugh. I left and then went to the store. I had to pick up stuff for my mother and also wanted steak for dinner. There was no steak I wanted. I left to catch the bus home.

I went to the pharmacy to fill my meds. They didn’t have a full quantity. I would have to go to another pharmacy. Ugh. Tomorrow is going to rain so now I will have to get wet. I am not happy. I wanted to sleep tomorrow. Least the temp will be a little warmer.

I had my mother make some eggs for dinner. Then I got hungry for the 1st time in 2 months. I ordered some steak tips and mozzarella sticks. It was good except the steak had a bunch of peppers and onions with it. Yuck. I saved the leftovers. Now I am quite tired. My ankle is killing me because while taking off my pants to change into my PJs, my ankle got caught and felt like I was ripping it off. It still has not calmed down. My mother had me do the few dishes in the sink. I debated on blogging but felt like I had to.

My sodium is at the same number. I was shocked the doctor called me with results. He was very nice. I didn’t know my psych was out of the office. Oh well. I decreased the mood stabilizer again so am taking 300 twice a day. Hopefully in a few days my energy comes back. I hope I don’t have to go off my med. I see my psych next week so we’ll see how I feel.

I bought a mango habanero sauce I want to try for my chicken wings. I forgot to get then while I was out today. Maybe I will get them tomorrow. I want to have them for the New Year’s eve party my sister is having. I have to buy a lot of wings. Not sure I can do it or afford it. All depends how i feel.

When you want to sleep but your brain has a million things to think of so you write a blog!

When you want to sleep but your brain has a million things to think of so you write a blog!

I had a good appointment with my psychiatrist today. We went back and forth over what might be the cause of my sodium being low or rather me feeling crummy (she too, doesn’t think it is causing me to feel fatigued and crummy, UGH). I am a medical mystery. Well last night I got pissed off because no one was listening and decreased my damn oxcarb! I felt a little better today but I am still so fucking tired from going out. I left early and the fucking bus was late which threw me in a tizzy because I can understand the bus being late once or twice, but all the fucking time now and I have no idea why!! And the T doesn’t fucking care or sends you alerts AFTER the bus comes to the stop taking you to your destination.

Anyway, my psych doesn’t mind decreasing the oxcarb. I knew she wouldn’t. She isn’t a drug pusher like some docs. She wanted to lower my Invega but I am really on the lowest dose and it is an extended release pill so I can’t cut it. I am not taking much Ativan. Other than my breakthrough meds, I am not taking many meds during the day to cause me to be drowsy. I think the espresso carries me through until it wears off and then I crash. The sucky part of all of this is that I am not seeing my therapist and I HATE this part of the feeling crummy deal. I have to cancel Monday because this isn’t an easy fix. I might be able to see him Wed. She wants me to go down to 600/day by the next time I see her. She wants me to lower the dose in like 4 days but I am waiting a week until going down further because I know my body and I don’t want to go through withdrawal. Trust me, I went through it a few times and it isn’t pleasant! I am going to do some adjusting on my part as I will need to take it twice a day. It was a problem before as I wasn’t taking things twice a day and I would always miss my dose so I just took it at night. I was at 600 mgs until about 4 years ago when the hypomania came back and I had to take the 1200 mg. Now that I am taking meds in the morning, it won’t be that big a deal unless my pain makes me miss a dose but I will just take it when I get up because withdrawal sucks!! So I will have plenty of Trileptal for a while.

My pain has been mumbling most of the day today. I thought I was going to flare when I got home as while I was walking, my ankle starting hurting really bad. But nothing bad happened so maybe the AFO was irritating it or something. It is still early in the evening though so pain o’clock hasn’t come yet.

Don’t know if I mentioned this in yesterday’s blog but my barber was telling me his 4 year old son is carrying around my book and asks that it be read to him every day. I thought that was so cute so I bought him Anne Wheaton’s kid’s book called Piggy and Pug. It is a very cute story about adopting pets. I think that will be better suited.

I am so tired. It will be another hour before I can take my night meds. Hope the Ativan in it calms my fricken brain! Nothing worse than thinking a million things and not sleeping. It is going to be really cold as the temp is going to drop during the night. There might be snow this weekend, then will be 50 degrees for a day just to tease us then back to cold. I hope that by Tuesday I am feeling a little better. I don’t know if the 1L restriction is still in place or not. But seeing as I haven’t moved my bowels in a week, that isn’t happening until I shit again. I feel so uncomfortable. I probably will feel better when I go. I thought I was going to go today but it was a false alarm. I was going to take some more Miralax when I came home but once I got into my bed after changing, I didn’t want to go back downstairs and tried the nap thing that failed! I took 3 fiber pills so I am hoping for either colon blow or a big dump followed by colon blow. I’d be happy with a little dump at this point just so I know something is moving!

Another blog by phone: doctors suck when they don’t know what is wrong

Once again I am a ping pong ball between my psychiatrist and PCP. He doesn’t think my feeling crummy and fatigue has anything to do with my sodium levels even though I explained to the jerk that when I was 2 points lower I felt sick. Now I feel sicker because the damn sodium is lower! He has exhausted all medical tests to cause this so I am going with my fucking gut this is due to my mood stabilizer lowering my sodium levels causing this. So I am decreasing the dose by 300 mg. I see my psych tomorrow and I hope she won’t fight me on this and just repeat my tests in a week to see if there are changes.

The asshole wanted to discuss this AFTER my appt. No, not happening. Because you know what is after tomorrow? The weekend! Nothing will get fucking done until Monday and I am sick of feeling like crap so this is happening tonight. Fuck him. I want to see my therapist again without it being a big fucking ordeal. It is bad enough I get flares after I see him but to be totally wiped out the day after? No. I am just not letting this happen again. I waited 8 fucking years for the CRPS diagnosis. I am not waiting another week of back and forth to figure this out. I know it is the med. And if I am wrong, then I am wrong and we go from there. I am willing to be unstable to stop feeling like shit. It is my fucking life last I checked!

The pain program called me this morning. I had talked to them Tuesday saying I was sick and didn’t know when I was going to feel better. I guess they felt I already had too many cancellations so they discharged me. Thank god. I didn’t want to go anyway but was forced by the pain doc because I felt they wouldn’t prescribe my pain meds otherwise. I also went because my PT felt it was a good program but the program changed because they were not doing anything she said was available. I just had OT (occupational therapy) and physical therapy. I honestly felt the PT didn’t understand CRPS. I really didn’t. And like the PT I was seeing, this PT’s exercises caused flare ups. And it wasn’t the muscles that I was stretching but my damn foot because I had to exert pressure on. I won’t be going back. Ever.

Today I felt a little better but after I got my haircut, did some shopping, I was fatigued again. I felt like napping but it has been so hard to wake up. I hadn’t eaten anything all day except for 4 cookies with my coffee until my mother made dinner. I didn’t keep my fluids to 1L. Only because I haven’t had a shit in a week. I am so backed up it hurts. I took Miralax today and felt stuff moving but still nothing. Going to take some more fiber pills and hope for the best at this point. Just hope I don’t get colon blow.

Fatigue is killing me!!!

Fatigue is killing me!!!

My alarm went off and I took my meds. I checked to see when my delivery would be here. It said in about 40 minutes. I quickly made some coffee and had a few sips when the truck came. The delivery didn’t include a few bottle of Powerade and the buffalo wings I had wanted to make for dinner. UGH. I guess it is ramen noodles or something. After I put everything away and then fixed the Powerade bottles so I could take a bag up to my room, I was exhausted. The weather took out my back so I was working slowly. Now I need a nap.

I emailed my psychiatrist around 8 last night to tell her I was frustrated with feeling like shit and being tired all the time worse than I usually am. I waited for a response and got none. It is now almost noon and still no response, I am ready to page her as I want to decrease my dose of my mood stabilizer even before my blood tests. I am just so fucking tired. Doesn’t help that my foot is going fucking bananas right now. It feels like a grater is grating the top of my foot. It is so sensitive right now.

I got an area of my stomach is killing me. Feels like gas is trapped and won’t go anywhere. Just fucking lovely. I have no idea if it is gas or shit. I don’t care but it better be moving because it hurts. I might take some miralax. That might work but if it doesn’t and works tomorrow, I am screwed because I will be out. I am ready to email my doc and say fuck it, I am decreasing my dose by 300 mg. And watch my sodium levels will be higher. (Don’t know if this will happen but I hope it will be so.)

I think I have to take some Neurontin because my foot is not calming down at all. Neuropathy is such a fun thing (being sarcastic here). It really sucks. But the pain is always so different. Drives me fucking crazy.

I am feeling really depressed and feeling like a nothing. Seems like everyone can do things I can’t. I hate that people can walk their dogs or go for walks period and I am over here struggling just to walk down my hallway and around the kitchen.

My lunatic aunt called to say to look out for my mother. When my mother came home, she called out for me. I asked what, and she told me I had a package. It was from my friend that is not doing so well. I honestly didn’t expect a package from him this year because of all his troubles. It was nice that he sent it to me. Now I got to get around to call him. Anyways, I went downstairs, barefoot, and then went to the kitchen where my ankle pain shot up so high my mother thought I was crying. I could have been the pain was so bad. I waited for it to pass but it didn’t. I opened the package and then put the fruit and nuts away. Then put the box in the recycle pile and went upstairs. I had to stop a few times because of pain.

I had a message from my psychiatrist when I got back to my room. WTF she didn’t understand what I have been telling her. I felt like telling her off but I didn’t. I simply said that if I don’t lower the dose of the medication, I won’t be seeing my pcp tomorrow because I will have no energy! I haven’t had a response. I honestly don’t expect one. It is my body and I will do whatever I want to get it so that it somewhat cooperates the way it is supposed to be and if taking 300 mg less of what I take will do that, so be it. I had a salty lunch of Ramen noodles and crackers. I had bought these crackers that were cheese and peanut butter but the filling was just peanut butter so the crackers must have been cheese crackers, I guess. They were good and salty so I didn’t care. If I am up to it, I might make a turkey Shepard’s pie. I really don’t want peas and pasta. I took some Neurontin to calm down the crazy nerve pain I am having. I have no idea if it is going to knock me out or make me goofy. Either case, I will be taking a nap soon and hope that my damn foot pain doesn’t increase. I am just so wiped out that if I don’t sleep, I don’t think I will be making anything.