painful day

Painful day

I woke up around 230 am in pain and my day has pretty much stayed that way. I have been in bed all day but I just cannot get up. I need to go to the pharmacy but I can barely manage the stairs right now so it will have to be tomorrow. I know it is because I did way too much walking Wed and Thurs for my appointments. Cold weather and having a cold just wipes me out. Next week I have four appointments. I am debating keeping my appointment with my therapist for Monday. I don’t see the point in seeing her. My anxiety is still going to be up. I am already starting to panic about Wed. Wed I see my neurosurgeon and we will be discussing what to do with my back and bladder problems. I have no idea how it is going to play out but I just hope he is on time.

Thursday I have two appointments, one with my therapist again and then seeing my pcp. Hoping that the pcp can do something about these bladder pains I have been having. Nothing is fucking wrong on scans. I really don’t want a cystoscope done. It probably is just inflammation from the catheter but I don’t want to live the rest of my life in pain because of this. WTF.

I see uro the following week so that is good. I really like my urologist. I am glad she is my doc. I know she will do what is best for me. I might have to switch catheters even though I really like the ones I have been using. They are just convenient for me. I just looked at some through the company that I am currently using. I requested some samples. I might call my supplier and see if they have samples as well. They gave me a bag but with the catheter I use, I cannot use the bag so it is useless for me. Things I never thought I would be talking about on a Friday night.

My eating has been poor the past two days. Yesterday morning I ordered nuggets from McDonalds and that has been the last thing I have eaten in the past 48 hours. I just had an Ensure as I don’t think I will be going downstairs. I need to go to the grocery store this weekend and get some more of the new cereal I like. It is by Special K and is called honey oat. It has multigrain flakes in it. It is so good. I hope they have a bigger box in the store than they have on the app that I buy my groceries from.

walking too much

Walking too much

Yesterday was my first double header since being sick. I am not 100% well so I was really tired when I got to my second appointment. I am glad the two buildings were close to one another but there was still some walking involved. Therapy was a little rough. I am experiencing so much feeling and she doesn’t put up with much in between stuff. She likes to stay on topic and squeeze shit out of me when I don’t want to. I have hid from my feelings for a long time so this is completely new to me, to have a therapist that actually wants to work on feelings and stuff. I talked briefly about today’s appointment with her as I didn’t want to be stepping on people’s toes. Everything is a gray area all of a sudden. I feel like I am seeing psych sub specialists for things that I used to see one person for. Yesterday’s events exhausted me and what the cold didn’t do was make me exhausted enough to sleep. My nose kept running and I felt like I had a leaky faucet for a nose most of the night. Same tonight. Then my bladder kept me up with its constant shit of having to be emptied. I also been having loose stool so I been trying to void on my own rather than use the catheter. It’s the only way for me to go.

Today’s appointment talked about boundaries and for the first time I felt like I wasn’t asking too much by wanting privacy in the bathroom. It has been giving me such anxiety so we creatively came up with ways to say I am in here so my mother doesn’t barge her way in. One is fixing the lock on the door. It has been broken for so long I honestly don’t know if it can be fixed. It will require YouTube and google or I might have to get another mechanism or part to have a working lock on the door. Most people would know someone is in the bathroom and respect their privacy however those rules don’t belong with my mother, least when they concern me. Going to try these things first before actually having to talk to my mother which isn’t going to fly with her.

Yesterday I had sent my psych an article about trans youth and suicide. She recognized the name as one of the residents where she used to work. She then asked me if I thought about coming out sooner would have changed the course of things. It got me thinking and I am still thinking about things because I realized last night, despite twenty-five years passing, I am still suicidal and I am pretty much in the same boat as I was emotionally as I was then that I am now. What is going to keep me here is what is going to make the difference. I sent my therapist a text last night of the question and she responded this morning that it was a good question. Last night I started jotting things down of what has happened and if I do have something this time around that I didn’t have back then. I am not sure I will still be around. My mind has been going and planning this for a while and maybe this time I will succeed. But I think I need to know if my therapist cares if I am to continue to be here. I think that is why I am getting angry with her is because the voices have been saying a lot of stuff about her and I just been listening to them. My messages aren’t being answered when I send them. She doesn’t respond to my texts usually. If I am supposed to work with her, I need to know she gives a shit, that I am just not someone to just fill a spot because she has an opening.

If I sleep tonight, it will be a miracle. Ankle was already hurting before I left the house. My legs are killing me from the walking around the Government Center area I was in today. It would have not been a big deal if I was “normal.” Being disabled really sucked. But I am glad I saw the psychologist today. I feel better knowing I was validated.

sick and in a flare

Sick and in a flare

I woke up around 5 am because my bladder said to. I then decided to stay up as my grocery delivery was scheduled between 830 and 9. I had two cups of coffee and a breakfast sandwich. After the delivery I put the stuff away and then got my haircut. I went without checking the bus schedule and was too early. I had sent a message to my doc asking if I had to see him because of the mucus being green from my nose. I didn’t get notification until after I got home so I had to go back out again. I just wanted to go to bed and sleep. I was so tired and I had a mocha after my cut. No amount of caffeine was going to keep me awake. I got to the doctors and had to wait. Office was busy. I got sent home with a “ I will live” and I cursed myself for going in. I was really exhausted and tired by the time I got home.

I was playing with my phone and had to use the bathroom. Coming back to my room my ankle flared up. I had to have my niece get my cane in my room. Now I am stuck here. I went to bed before grabbing some catheters so the next time I go may not be the bathroom. I have not been successful cathing in bed. I guess I will have to figure it out now.

I used to love Twitter. I used to get my news from there. Now, I rather be in the dark about the fucking news because every day my govt does something stupid or unconstitutional. Let this year be over so I don’t have to deal with the election bullshit (I will vote!!) and let Jan 31st happen with NEW admin that is Democratic or Pigskins anything but R. All I will say on the matter. If this offends you, I am not sorry.

Hope this weekend’s storm doesn’t kill me. My little suicidal brain has been calculating shit. I won’t get far if and only if my psych do what I told them to do. Other day when I was in painsomnia mode, the voices got out of control. I was thinking of going in the hosp but now with this cold, it isn’t going to happen. They don’t allow fricken cough drops on the unit and the ones that they do allow are the kind that a doctor has to write an order for and numbs you. I hate those kind. I also don’t think going in will be good for my bladder condition. I am too fearful of an infection happening, either because of my having to cath (if the unit allows ME to do it) or if I have to have a Foley and a leg bag. Psych unit bathrooms can be gross even if cleaned once a day. The voices are responding to the higher dose of Invega. I guess I will have to keep taking this dose despite side effects. Benadryl and Ativan will have to be my counter agents for the side effects. I switched taking it to the morning and haven’t had any sign of effects yet.

I’ve already decided that if I am still sick next week, I am going to cancel my appointments with my psychopharm and therapist. I didn’t have therapy this week because of being sick. I supposed I could have been seen today but I really didn’t want to so opted for next week. I am having the fuck its come into play where I don’t want to see either of them because I just feel so damn hopeless. I might cancel anyways or just one as I am supposed to meet both the same day but at different times. I don’t know why I do that because it kills me but it gets it out of the way I suppose. Guess it will depend on how much this virus and this flare will conspire against me and what my recovery will look like. Stay tuned…

First bad news of the year

First bad news of the year

I’ve had bladder pain all weekend and my uro is out of the office due to illness so she wanted me to see my pcp. My pcp wasn’t in the office so I went to medical walk in. The doc there was concerned I might have appendicitis so he had me down for a CT scan. The scan indicated everything was normal except my spine which had advance discogenic degenerative changes from L2-L5. Not the news I wanted to hear. I am already freaking out over my upcoming neurosurgeon appointment and this just added to my nerves, no pun intended. I am going to ask my PCP to tell him what has been going on and to see what he (neurosurg) wants to do. Maybe he wants to see me sooner than the 5th. I don’t know. My psych said that if I have surgery, she will visit me. Least that is one way of seeing her again. Though I rather it be her new office not my hospital room!

I’ve been in a mood since I came home. I want to self-destruct. I sent my psych a message that I am keeping things as best I can even though I want to plan right now (I didn’t tell her that). If I had some lethal method I would probably act on it. I am keeping focus on things other than suicide and that is very hard when you just want to end your life because things suck so bad right now. I did some Amazon shopping. I probably will do some more tomorrow as there are a few things that I need that I didn’t get. I just don’t want three charges all on the same card.

Voices have no calmed down despite me increasing the dose back to 4.5 mg of Invega. I might have to wait a bit. I canceled therapy for tomorrow because I just can’t go back to the hosp. I am so frigging tired and the stupid doctor hit my right heel to see if it caused abdominal pain that it flared up the sensitivity and my Achilles heel as well. I am in pain all over the place. Plus my ankle is in HUGE amount of pain. It locked up on me again when I came home soon after I took the AFO brace off. I haven’t eaten anything substantial but I gained five pounds since the last time I was weighed. I don’t know when that was but I was five pounds less. I am upset over gaining the weight. I was doing well to stay below 200 but I couldn’t stay off. I just had ensure when I came home and Gatorade. I am not hungry, even though I should be.

On the way home, I found out the GOP Senators were traitors like they have been the past two years and Derek Jeter got into the HOF. I am happy about Derek. He has my deepest respect because even though he was a Yankee, he played with heart and class. Unlike some people that will never make it into the HOF.

I am feeling really out of sorts. The voices are continuing to tell me I am meaningless and worthless. This has been going on for a week and I am about to snap. I don’t know what I will do but it won’t be good. I am trying not to give into my impish ways. I just feel so awful about my back and there is nothing I can do except wait until I see the neurosurg. I also got to wait two days for the urine culture to come back to see if I have a urine infection. That is a lot of waiting. The doc gave me the choice of going on antibiotics now but I didn’t want to be treated for the wrong bug so I decided to wait, which is the right thing to do. Just sucks. The urinalysis wasn’t positive at all so I don’t think there is any bugs causing the bladder pain. Nothing showed up on the CT scan so I am starting to think this is a CRPS thing. If I am right, this is going to be a problem when I have top surgery. I got to read more into Type1 CRPS. Type 2 is supposed to be the “bad” one. But I don’t have that so it shouldn’t be spreading to my bladder. UGH. I got to play medical detective because there is no one else to play with the clues. Though the pain is bad but not as bad as my ankle pain. Not choosing pains just saying. I hope I can sleep tonight but tomorrow is shot and pay day so I doubt it. It’s already 11pm. I will probably give the T at midnight. Sleep for a few hours to wake up to pay some bills then sleep some more. I want to get a haircut tomorrow. I kind of fucked it up as I went wild but I don’t think I did a too bad of a job that my barber can’t fix.

My sister is sick and when my other sister told me I laughed out loud because she opened up all the fucking windows in the house when it was like 18 degrees out. Fuck. Serves her right. Dumbass she is. I have my window open and I only got sick because my mother doesn’t wash her hands or cover her mouth when she coughs, and she has had a bad cough. Her foot doctor sent her to her primary as she had a bad coughing fit. UGH. They have her on antibiotics, which is good. If they have her on something else, I doubt she will take it. She will pay for it but she won’t use it. I don’t get that at all. Meanwhile I got to remember to budget my money this month so I can get my meds. I forgot last month. My bad. January is tough. I don’t even know what my monthly insurance is going to be yet. I haven’t gotten the invoice yet. I am thinking it is going to be at least $232, might be more but I will stick with that for now.