Tag: chronic illness

painful day

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders, recurrent major depressive disorder

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.

not a good day

by Midnight Demon, posted in blogging, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

Not a good day

I woke up around 2 am to pee. I was up for a bit and felt like I should see my therapist today so sent a message to her. At 2 am. She sent me a response asking why I sent it at 2 am. So I didn’t see her. I feel like I should cancel tomorrow but I won’t. Voices are going bananas. The German voiced one is back. I have no idea what he is saying as his accent is so thick. I know that he wants me to die as that much is clear. So now there are three male voices. I thought I was getting better and this shit happens. I was able to get an appointment with the therapist for the 6th, the day after I see the neurosurgeon. I sent her a message saying that I was feeling suicidal and voices were bad. Haven’t gotten a response to ANY of my messages so I don’t even know why I fucking bother.

My mood has been low all day. I just want to sleep but I can’t because of the voices going around and around. I managed a shower and it further exhausted me. I wanted to shave my face and pits but it never happened. I just washed up and that was that. It took me forever to dry off as I was so tired afterwards.

I managed to have some lunch. I had some chili. Past few days I have just been eating cereal. Special K came out with a honey oat multigrain that is the bomb. It is so good. I really like it. It is cold today but I don’t think I will be going out. I was thinking about maybe heading to the Boston Public Library to do my research for my book but I am so damn tired all the time I don’t think I can do it. I can barely take care of myself. I still got a cold but it is finally going away. I just have a stuffy nose left over. Been taking 10,000 IUs of vit D. It seems to be helping a lot. I just wish this fatigue would go away. I am not looking forward to two appointments tomorrow. There is an hour in between them so not back to back. It is just going to be an exhausting day.

First bad news of the year

by Midnight Demon, posted in blogging, cauda equina syndrome, Chronic pain, chronic physical pain, CRPS, depression, mood disorders, recurrent major depressive disorder, suicide

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.

1st cold in a while

by Midnight Demon, posted in blogging, Chronic pain, chronic physical pain, CRPS, depression, mood disorders

1st cold in a while

I got my first sickness of the year. I was starting to come down with something over the weekend and now it is full course. I am coughing and got a runny nose. I am all congested but no fever. I ran out of Nyquil so I am just taking vitamin D. I feel a little better today even though I am stuffy.

My urologist got back to me today. She is sick but wants me to drop a specimen to the lab tomorrow and have my pcp follow up with it. So I sent him a message about that. I don’t know if it will be tomorrow though as Wed I need to see my therapist.

I still have the assignment the therapist gave me last week that I haven’t done yet. It is hard because I have to think what three need mean to me and how to achieve them. The first one I picked was achievement, to increase self-regard by the successful exercise of talent. I often dismiss my achievements like they are nothing. For example, the PT I saw was amazed I was able to get to her appointments from the next two towns over by public transportation. To walk to the bus/train stop and then go to and from. She gave me credit for that and I never thought of it that way. I would sometimes I have a pain flare after, but that was something I did without it being a challenge. Writing lately has been a challenge. I would love to write at least five days a week but I know there are days where I am not feeling up to it physically or mentally. It is hard to write when you feel like complete crap or your ankle is screaming on the top of its lungs.

The second thing is play. I would love to have a chance to go to the chess club more but sleep is more important to me. I have to plan the day because I have to take the bus on a Sunday. Then walk to the plaza. Sometimes they go to the coffee shop if the weather is not great and that means I have to have money for coffee. I usually don’t carry cash and I am often broke by the time I get paid. Just trying to have an extra $20 for a haircut has been hard. That also makes me feel good, to have a haircut. I wish I could go more than once a month but budgeting it now with having to budget my meds hasn’t been possible.

The third thing is defendence, to defend against assault, criticism, or blame. I need to stand up for myself more in my house. I let my sisters and mother boss me around all the time. They don’t think that I am disabled and that I do things on purpose, like leaving the toilet seat up. That is a new challenge for me with this whole catheter business. They don’t understand that I am not aware of things that they are. Yes it sucks but give me a little credit or just tell me so that I don’t do it again. Don’t get mad at me for something I don’t know I am doing. I am not doing it on purpose. I get so irritated with my sister about this stuff. She has no respect for other people. My mother has no privacy for my bathroom uses. It is really frustrating. I don’t know how to deal with this because both are so volatile.