Tag: chronic illness

one that got away

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

One that got away

I’ve been in a writing mood today. I seem to be writing in the late evening as I have a lot on my mind. The therapist responded to the texts I sent her. She said things are always going to be tough (no shit!) and maybe talk about additional “treatment factors”, whatever those are. I guess I will find out Thursday. She did say that she is open to whatever I bring in so that is good. I am glad she isn’t rigid in what she practices like past therapists. But then the one I saw for 16 years was and then she ended on me. I blame myself for it and the stupid CM went along with it all because I asked her if we should end.

I didn’t do anything today. I wasn’t feeling up to doing anything today. I crossed my room to get something in the hallway and my ankle acted up. There was a ten degree change in temperature so I am guessing that is why it is still hurting me. It got cold so I have a thermal sock on it right now. I missed having them while in the hospital because my feet got cold on more than one occasion and I needed a hot pack to warm it up. There were a few days, around the same time, where I felt like there was cold water on my foot. I kept feeling my foot to see if it was wet but it was dry. Then it would become really cold. It always happened around shift change, which annoyed me because there were no nurses to give you a hot pack. I am not sure staff could but it was just ridiculous!

I charged up the study watch but now I am having trouble with the app. It logged me out when it updated and I can’t seem to sign back in. I put in a message to the tech people but I haven’t heard back from them yet. They gave me a new login password but it still doesn’t work. I don’t know. I will just have to wait. I didn’t tell them about not wearing it the past three weeks.

I was scrolling through Twitter, like I always do, when I came across the nowmattersnow.org tweet about how going to the website reduces suicidal thoughts. I thought I would give it a try. Instead of helping, it made me feel worse because the pain they are talking about, is psychological not physical. I may have intense emotions that are causing me to feel the way I do because of my physical pain but it is a situation thing. One of the videos said that suicidal thoughts were actually an okay thing because it makes sense as it is a relief from the intense emotions. Unfortunately, I gone from suicidal thoughts to actions. I plan on acting on my thoughts when the pain is less or within a few days of having intense physical pain. The pain I am feeling right now is not excruciating enough to think about suicide but it is lingering. Pain just changed because I moved my big toe. Hurts so much that I had to take a breakthrough med. UGH. I cannot be free from high pain, ever. I find this hopeless to think things will get better because with pain, nothing ever gets better.

I am really tired so I will sign off here. I am not sure I will be here the end of the week. All I can focus on right now is right now. I hope that is enough.

hopeless and depressed

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

Hopeless and depressed

Since last night, I have been in a very down mood. I have been avoided using the word “depressed” to describe it because the people at the hospital told me I was making myself hopeless and depressed. I sent an email to my psych about it and have not heard back. I don’t think I will so it is just making me further believe that I am making myself hopeless and depressed. The chaplin I saw asked me where I picture myself five years from now. I said I don’t. I don’t see a future at all and I guess that pissed her off because the next thing I know, she is telling me I am making myself hopeless. The case manager said I was throwing a pity party for myself. I am just fed up with these so called mental health professionals. I don’t even want to see the therapist on Thursday. I really don’t see the damn point.

I’ve been resting most of the afternoon. Other than the burrito and a half sandwich of asparagus and eggs, I haven’t eaten much. I bought a pair of jeans. I got them a size smaller and they are tight because they aren’t “relaxed”. I am not worried as I know I will lose weight soon enough. And if I don’t, the pants will just go to good will. I am tired of fighting things. I feel so damn depressed right now and I don’t even know why. I wasn’t in a great mood all day but pain has hit and my big toe is swollen again, causing a pin being stuck in it feeling. I tried cleaning out the bed, thinking there was dead skin or lint there and came up empty. I also filed the nail so it is rounded and not straight. It didn’t work as well as I hoped it would. My foot feels like it is going to cramp any second. I would take a melatonin to knock me out but I don’t even think that would help. Pretty soon the ankle will start hurting. I am getting little twinges. I am not sure taking a pain med now would be okay. It might be as by the time it kicks in, it might stop the pain from getting worse. But sometimes that doesn’t work either. I might take some gaba to try and see if that will help.

I want to send a text message to the therapist telling her I am not doing well but I don’t think it would be wise. I am not sure she would respond until tomorrow and I am already sending her 2 scheduled texts about how I want to handle my suicidality. But I don’t know if I want to handle it. Maybe I will try not to keep myself away from me. I thought of sending her my blog “used to” but I don’t think it is necessary. I don’t want her to get a million texts from me all at once.

I know part of me is depressed is because I have had to go back to wearing diapers again. The bladder cramps have been causing leaking. Every time I go to the bathroom, I notice my underwear is wet. I gave in to taking Pyridium as I couldn’t take the pain and cramps anymore. Three days is enough. I sent the uro a message telling her of what I did and that I am hoping correctly that it is just readjusting to the medicine again. If I am wrong, I hope she will tell me. I also hope she doesn’t want a urine sample as the Pyridium can alter tests, making them falsely positive or negative. I just hate that this is an unwanted thing because my bladder is not functioning properly. I still don’t know if it is a worsening of my back issues or the back issues caused it. Kind of like what is going on in my CRPS foot/ankle. I don’t know if the CES made it more susceptible to CRPS or if the spasms caused it when they sprained my ankle. I may never know. But regardless, what is done, is done. I can’t change it. Which just makes me depressed.

Ducks in a row

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

Ducks in a row

I’ve been struggling all week. Pain and depression have been an all time mood sucker, increasing the suicidality to the point where the other night, I have things down pat. I am or should be “happy” about this but not really. The fact I can act at any time gives me some relief that when I want to escape, the choice is there. There really is nothing about what if anymore, well there is. I could be rescued or have a change of heart and get help before things take place. I won’t know until that moment. Worse case is I just get sick. I hope that doesn’t happen.

I had therapy this week. I still have no voice from my allergic reaction on the 16 Aug. I saw the folks in laryngology and the PA (physician assistant) said there is some constriction of the things surround the vocal cords, causing my voice to be the way it is. No cancer, polyps, or anything else causing this. I didn’t ask what was causing this as I just wanted to get the hell out of there. She was kind of freaking me out because when she started explaining things, she would shut her eyes and then go off tangent, making me all confused. My appointment was at 2 and even though I was in the room by like 215, I wasn’t seen till 245 and by the time I was done, it was 330. The camera was not pleasant. I had a microphone on my neck and it shifted. As she was trying to get it adjusted the damn fiber cable went further down my throat to the epiglottis, making me gag. I asked what can be done and she basically said time. I asked about speech therapy and she was not advocating for it so I practically had to beg to get referred to it. She said the therapy is booking out in a month’s time so theoretically, my voice could come back by then.

I was expecting this as the folks in the ED said the same thing (well more that I needed speech therapy, not so much it would get better on its own). My pcp pissed me off that day because he wanted me to stop my allergy meds. Even though I said I take it every day and have for years, they think it could be a reason. I really don’t see how all of a sudden this medication would make me hoarse. The laryngologist said the GERD could be causing this but I haven’t had too many episodes for this to happen and when it did happen before the allergic reaction, my voice didn’t change. She recommended some antacid that I am to take at night. It isn’t a kind that I can get at the drug store but online because it is supposedly made with seaweed. I don’t know. I don’t think that is the reason either, unless the ginger caused so much acid production it did affect my voice this bad.

I’ve been in contact with my psych. I spoke with her today. She asked what I was doing and I said I didn’t know as I just woke up and haven’t had coffee yet. She told me to get coffee. LOL She is too funny. Kind of strange that she only recently laughed at my humor and made jokes. Don’t get me wrong, I do love hearing her laugh. I just think it only took 26 years to hear it. LOL She didn’t tell me when she was going to be in an office soon. I haven’t asked because I know she will tell me when she has one. She does want me to write to the therapist about the stuff that is going on. Think I will do that today. I really struggled to talk to the therapist this week because of my voice. It was so shot after seeing her Wed. But then I was up more than 24 hours when I saw her. I was also up most of the day Wed. I just could not sleep despite taking melatonin and Ativan. I was so overtired. I felt like total shit yesterday and still feel crappy today, though much less so. I did a few errands today and my last stop had me weary. By the time I got home about 15 minutes later, my ankle flared up (it was already a 9 to begin with) and I just felt weak. I got some stuff to do in my room (there always is stuff to do in my room). My sister has once again become a tyrant. She said she was going to do stuff this week to clear my room and bring some stuff up. Has not done so but I am guessing tomorrow she will. I hoping she won’t. She is really sending my anxiety up the roof and I have been so hypervigilant that it is hard for me to relax. Yesterday I wanted to sleep but I kept thinking (even though she wasn’t home) that she was going to barge in my room at any second. If I can do two things that will make things easier for access to my alcove, I am going to try. Wish my nephew didn’t move all the stuff to block it even more. Now I got to move it all to the other side of the room where there isn’t much room to begin with. Just overwhelms me to the Nth degree.

Feeling frustrated not being able to speak

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

Feeling frustrated not being able to speak

“Running on empty. There was nothing left but doubt. I picked up my pen and wrote my way out.” Lin-Manuel Miranda

Someone on Twitter had this as their tweet and I had to keep it. It really is fitting as right now, I really need to write how I feel as things are becoming so overwhelming. All week I’ve thought about nothing but suicide. I was sending my psych emails and she would call me out of concern. After one of the calls, I sent her an email explaining how things get for me and I think she understood. I never got a response so I can’t say how she took it.

All week my voice has not been above a whisper. There are a few times where my voice seems to be there but only for a few seconds and then it is gone again. I have been in contact all week with my pcp about this. He was reluctant to prescribe a steroid only for fear of side effects. By Thursday I was not doing any better and I was feeling pretty damn frustrated. My pcp was away so I had to wait 24 hours for a response because no one was covering him apparently. I saw his nurse again and I stressed to him that I wanted to be on steroids to see if they would help. Instead I got a message asking me if I wanted to proceed with being prescribed Friday. I was so fucking pissed off I swore and told the nurse off. I told him that if I wasn’t going to be prescribed anything today (meaning yesterday), I was going to go to an emergency for the throat. He said the message would be part of my medical record and he didn’t like my tone. I didn’t give two fucks. I was aggravated and frustrated that all week I’ve had to rely on email messages to figure out what the fuck to do about my voice. I emailed my psych, who was really worried as she kept harping on it, which forced me to do something about it. I went to the emergency department at another hospital.

I couldn’t talk so I wrote things out that they would need on index cards. I was seen my a physician assistant rather than a doctor. I had to explain what had happened, that an allergic reaction from one week ago caused me to lose my voice. She said that I would need to have a camera put down my throat to see what was going on and she would have to get a doctor to do this. I had to wait some more while she was getting someone. I was more annoyed at this. So this doctor comes in and I have to tell my story, again! He said he would put a camera up my nose to see my vocal cords. Great, another invasive procedure. There was some pain despite the lidocaine as they couldn’t really thread the camera down my nose because of my septum. I don’t know if it was swollen or deviated or what. He might have said but I don’t remember. First he said that things were swollen and I would need steroids. Then he left as he said he wanted a laryngologist to see the video and go from there. He comes back and said that I would need speech therapy as the muscles around my larynx aren’t moving like they should. For Fucks Sake!!! He said just to take an NSAID and make an appointment soon. The PA comes back with the discharge paperwork and some names of some doctors that I can try calling for an appointment over the next few days, which means Monday as it is now the weekend. I am glad I don’t have to be on steroids but I am not happy this isn’t a quick fix. I am to avoid speaking for long periods. I emailed my psych to let her know what was going on.

I came home and was basically crushed. I was overwhelmed that I didn’t kill myself like I wanted to. I was depressed that I had yet another invasive procedure and would probably need another one with a better camera for them to know what was going on. I further did not know how I was to have psychotherapy on Tuesday or see the new psychopharm on Thursday as both require me to speak for at least an hour. All I kept thinking about was just killing myself and now that I know that ginger is lethal for me, I was thinking of getting some gummies or something and that would be that. I emailed my psych telling her I was overwhelmed with everything. She asked if I wanted to talk and I replied you mean whisper. I told her to call me whenever as I had no plans for today.

I told her I wanted to cry but it hurt to have an ugly cry. She said crying would be good. I just can’t seem to be able to do it as my throat hurts so I have to stop. She wants me to follow up and if I can’t get a hold of someone, she will do it for me. Now I know she is really, really worried. She has never heard of this happening. I had sent a message to my urologist last night asking her if the new medicine she has me on can affect other muscles. It is the only thing new and I am not sure this is just a medication issue. She responded that she doesn’t think so but I should ask my pharmacist.

I cannot believe what has transpired in just ten days. I have been trying to write all this since Wed but every time I tried, I would start to cry and my throat would hurt so I would have to stop writing. I couldn’t even talk to some one about it as I have no fucking voice! All I could do was type, which is not the same fucking thing as I found out. Communicating with my mother is the hard part. I need to write down what I need to say to her because otherwise I would have to repeat myself three or four times and that just hurts too much when you have no voice. I had wanted to do some stuff around my room today but my psych said I need to rest as much as possible because of everything. I took a shower and now I am going to try and finish Harry Potter and the Order of the Phoenix. I have four chapters left in the book. Unfortunately, the chapter I am on is when Sirius dies. I hope I don’t cry.