outside looking in

Outside looking in

Last week, I wasn’t feeling well. Each day I was feeling more and more sluggish and sleepy than the day before. Monday I used the bathroom and noticed some swelling under my chin that was not there before. It felt really hard. I didn’t want to go back to see a doctor nor did I want to spend time in the ED again. I had finished the antibiotics for the urine infection I had so I am thinking there is no way I could have another one. I was wrong. I went to urgent care and sure enough, my salivary gland under my chin was infected. The PA (physician assistant) wasn’t sure if it was bacterial or viral so put me on antibiotics with a referral to an ENT. I was supposed to meet up with friends but I felt like shit and had to cancel. I went home after picking up my antibiotics and went to sleep.

Next day I was to see my TG doc. My mood really sucked that day. I just wanted to be in bed. I still felt like crap but I had to get my T shot and discuss the transition with my doc. It went okay. I had my shot and then I figure I would just go home and sleep. I couldn’t. Pain hit and I was again suicidal. I texted the therapist when I got home saying that I was struggling. We talked for a bit and she made sure I wasn’t going to act on my thoughts. I said I wouldn’t today. Wed morning she texted me asking how I was. I told her pretty much the same as last night. Wed was a really bad day. I was in such a rotten mood. Pain was hitting me because of the storm that was coming. I wanted to ended it that day but it was supposed to be raining. It wasn’t so I was pissed as I didn’t get up till after 12 to know this (room is dark as I have window with a darkening curtain). I didn’t do much that day. I just stayed in bed. That night, as is now becoming my usual, I woke up between 2 and 3 am to empty my bladder. My ankle was hurting so fricken bad. I sent off a text to the therapist that if the weather was formidable, I was going to end it either today or tomorrow. I was done. I had scheduled texted it so I could delete it if I wanted to before it sent. I woke up around 815 or so yesterday and was going through stuff. I was so fucking depressed but the wind was really howling and it sounded nasty out. I was on the fence on whether I would go through with it or not. The text was sent and I used the bathroom. I came upstairs and there was a missed call from some Boston number. They left a message and it was the therapist. We chatted and she wanted to send an ambulance for me. I had her talk to my niece and she disposed of the ginger I was going to use. I was then to see the therapist later.

I was really nervous as I didn’t want to go back to the hospital. I got some coffee and went on my way into Boston. We talked and things went well. She was open, really open, to what I was telling her and how I wanted to talk about being suicidal. She wanted me to come in Monday. I really didn’t want to but I was afraid to say no as she might say I would need to be in the hospital and I didn’t want that. We devised a way to convey to her when I am close to being suicidal again but not going to act on it within 24 hours. I don’t know if I will go through with this. I said I would but I am not sure I will in that moment. I wanted to go through with my plan today but I am just so damn exhausted. I was supposed to call ENT and all I did was call to make an appointment with the psychopharm, the new one I have that works with my pcp. The appointments were supposed to be 30 mins long but for some reason, I got booked an hour. I guess that is ok. I have the appointment on Wed. I am going to try and get out of therapy that day when I see the therapist on Monday.

I wasn’t sure I would be able to write about this today. I am still in a really bad place and the anhedonia is really bad. I have no joy doing anything anymore. Writing has become so hard for me. I haven’t written in my night journal in so long. I think I last wrote in it the week I got discharged from the hospital. I am overwhelmed with everything. This new stuff with my bladder hasn’t been easy as it is interfering with my sleep. I wake up in the middle of the night and it just throws me off. Sometimes I can go back to sleep but it takes a while to get there. I am still losing weight because I am not eating. Yesterday all I had was a pumpkin scone. I was able to make a chicken sandwich today. It has been the only thing I have eaten. I just have no appetite the past few weeks. This whole new change with having to cath has really made me feel more depressed than I have ever felt. I also don’t have much support other than with my support group. I finally was able to have peace with my middle sister as she was freaking out about the disposal of the caths. I can’t deal with anything else medically going wrong this year and the stupid salivary gland thing was my last straw. I don’t want to see another new specialist this year. I know I need to because the swelling is still there despite being on antibiotics. I do feel better physically but not 100%. It could just be that I have another urine infection. I haven’t figured out how to get a urine specimen while cathing as I need a third hand. I bought some sterile bowls. I hope then I can just collect the urine there and then pour it into a cup.

I shaved and showered today, though not my face. I have been growing whiskers on my face so I let it go and then when I can’t stand it anymore, I shave it off. I haven’t been great at showering this week. I seem to go once a week, if that. I just don’t have the energy to do it. It exhausts me trying to wash up and dry off, especially with whatever is going on. The TG doc did a blood count so my white counts are within norms. I still feel yucky despite this. I need to change my sheets this weekend. If I don’t wake up at 3 am again, I might do it tomorrow. It needs to get done.

therapy didn’t go as planned

Therapy did not go as planned

Last night I wasn’t too tired. The infection must have gotten a little better as I had some energy. Either that or my brain just wouldn’t shut off. I was nervous about the therapy appointment today so I started writing down stuff I wanted to talk about regarding suicidology stuff that I have learned the past 10+ years. All of it was a waste of time, least at this time point. I went to therapy and we discussed what went on over the weekend. I told her I was feeling kind of suicidal but in passing. I ask her if she is ready to be taught and things went downhill from there. She comes at me with a bunch of DBT shit and that I need to learn to cope better by using coping skills, that things with my family will always be there and I need to learn to handle it differently. I took the information in, trying to wrap my head around it. I gave the example of my foot being a trigger and how interpersonal skills would not be helpful. Understanding why the foot is hurting me is not going to be helpful or trying to perceive what it is trying to say. I mean come on, this is a medical condition with a painful limb. You cannot fucking talk to it! You can’t even ignore it! She smirked when I said this then said there was some data saying something about dealing with it decreases pain. I told her we needed to collaborate and she said we are but I got the impression that she was still in the “I’m the expert, you are the patient, therefore, you need to follow what I say.” I left there feeling really bad and unheard. All the preparation that I had done was for nothing. Even the safety planning stuff that I brought in was left for me to deal with on my own, without really going over what to do when I am in crisis or who to call aside from some SAMSHA number. Like seriously? You want to know I am in crisis yet want me to call a hotline? OK. How does that even work? She also doesn’t really like me texting her outside of crisis because she may not be available. Okay, that is fine. I get that. She did say she would make herself available if I were in crisis. Convenient for that though, eh? But other than that I am to call a hotline. Mixed messages. I mentioned that narrative was important to me and that was shot down. It was totally invalidating that she just was not hearing me out and she just wants to do things her way as it is “in my best interest.” After we semi agreed which safety plan I was to follow, she wanted to make an appointment for next week. I said no. I would see her the following week. She then said I was mad at her. I told her I would be mad at her next week because I am not seeing her. She asked why I wouldn’t see her. I wanted so badly to say because I would be dead but held my tongue. There was no way in fucking hell I would see her next week. I am too fucking steamed about how the session went, or rather, didn’t.

Rest of the day went ok. By the time I was on my way home, I realized I didn’t eat anything all day. I wanted to make a chicken patty sandwich. My mother made lazy-man’s lasagna. It was good. I had some meatballs and a sausage. But I really wanted a chicken sandwich. I made it and the bread I used had a hair in it! Totally grossed me out! I never had that happen to me before. Now I want to throw the bread away in case there is more hair in it.

Now that I am relaxing and getting ready for bed, my pain has decided to ramp up. My foot is killing me and my ankle is starting to. Legs feel like dead weight. They are so sore and I didn’t walk that far. Tomorrow I am walking more as the office I need to go is further down the street than the hospital’s main campus. I am nervous about learning to self-cath. I read the info sheet the NP gave me. I need to get a small bag to hold supplies now. I bought some small baby wipe packages. I tried to find the one that you can refill but they didn’t have them. This sucks because I bought a case of wipes not realizing they were refillable wipes, not a box box. So I have like 96 wipes and no box to put them in. I will try Walgreens tomorrow. Maybe they will have them there or a different CVS. I just hope I don’t have to pay for the supplies. I have no idea if my insurance will cover them. I know I need a prescription for them. I am hoping they give me enough until I get paid next to order them. I really hate this is yet another expense to have.

The infection is still with me as right now I feel so wiped out. Sucks battling an infection on top of everything else. I really hope I only need one course of antibiotics to deal with this infection. I am not sure if they will retest my urine after the course to see if it is gone. Also don’t know if I will have to follow up with uro or my pcp for testing. I am leaning towards uro. Thursday I see the NP at my pcp’s office that is a psychopharm. I need to get a refill of my meds that I forgot to tell the other psychopharm about. I could request it through the patient web thing but seeing as he is going on paternity leave and I need to be in contact with my pcp anyways, I might as well have her do it. Gives me a chance to meet her anyways as she is new to the practice. Then next week I will be back to see my TG doc and see the RN for my shot. Because of the nerve damage in my left thigh and the last time I got injected by the RN at the hospital, I decided I am not going to inject the T into it anymore. The nerve pain I got was horrible. So I am having the pcp RN do it in my behind. I hate doing this but it’s either that or more pain. I hope he is a good shot at this. Some RNs aren’t good. But we will see. I don’t think I have gotten an IM injection as an adult so this will be an experience. I kind of don’t like it because I have a fear of being jabbed by someone else. It is a common thing with medical professionals. It’s easier to give someone else a shot than to receive it. It will be a day early but that is so I don’t have to make two trips back to back days. The RN is nice. I sent him stuff on cauda equina syndrome. He seemed interested in it and I told him I don’t have normal function of my bowels and bladder. I hope he tries to understand it. It will be easier for me to tell him stuff should things come up rather than beating my head against a wall because he doesn’t know. It is frustrating when you want care and yet the medical provider just doesn’t get it because they don’t know. I am tired and this is going on and on LOL. Until later, my readers.

been a long week

Been a long week

I’ve had the longest week. Since coming home from the hospital, or even while in the hospital, I was having bladder issues. The issues got worse by Tuesday as I could not urinate after 15 hours. I ended up calling the urology office because my PCP’s nurse, who is ignorant of nerve issues, said to wait 24 hours before going to ER. The uro office said without hesitation to go to ER. I thought they would straight cath me and I would be on my way. Nope, they decided to put in an indwelling catheter. I sent my uro a message while in the ER telling her I was there. The next day I get a call from her office asking to come in. I thought I would go in to get the fucking thing out but instead, we talked about self cathing and botox injections. I was devastated. I fell into a depression. Thurs I had an appointment with the therapist and psychopharm. The therapist wants me to go to a DBT group. I declined. I was sleep deprived and not feeling well. I didn’t feel up to talking about DBT (or anything else for that matter). We did discuss some suicide safety planning stuff. Tomorrow when I see her, I plan on bringing the stuff I didn’t last week. She is open to me teaching her about this stuff. I think it will be a trade off with her teaching me what she knows of DBT and me telling her what I know of safety planning.

The meeting with the psychopharm lasted no more than ten minutes. He didn’t really ask about the hospitalization. I told him I wanted off the Lamictal and wanted to add duloxetine with Zofran. He agreed. Then he told me he was going on paternity leave and won’t be back till Dec. He wanted my pcp to cover my medication needs while he was gone. I asked if he would be back and he said he would. I said ok. He said to make an appointment with my pcp to talk about this. I left and basically crashed when I got home. I spent all day Friday in bed, only getting up to empty the leg bag. I last emptied the bag around 10pm and then no urine was produced during the night. I got worried it might be blocked so early Sat morning, I went to ED. They did a full work up as I was in a lot of discomfort. Everything turned out to be normal. I still felt like shit most of the weekend. I thought it was just because I hadn’t really been eating. Today I get results from the urine culture and it is positive for staph. This is why I feel like shit. I started antibiotics so I hope I am on the mend.

I am not liking this new event I am dealing with. I am fearful I may get more infections from self cathing so I need to be careful. I am not sure if I will need a diaper on days I am out and won’t have access to a semi clean public bathroom. Just the thought of having to carry around supplies with me every where I go now is freaking me out. I know I will eventually get used to it but I much prefer to go on my own, if I am able to. There have been a few occasions where I felt the urge to go but it could just be because I have an infection.

I am supposed to see the therapist tomorrow. I really don’t want to. I am feeling hopeless again. Wed and Thurs I need to be in/around the same place as where the therapist is. So three straight days of being in the same place at different times. I am going to be exhausted come Friday. Just hope I am feeling a little better by then.

hopeless and depressed

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.