feeling the way I do…

Feeling the way I do…

I had a busy morning. I woke up later than I wanted to so I didn’t go to the pharmacy early to pick up my meds. I had just enough time to make a cup of coffee then catch the bus to the train station for my appointment with my pcp. I was nervous as the first two times I saw her I was in a catatonic state. It went well. I met the nurse I have been conversing with via the patient website messages. I had met her while I was catatonic but didn’t remember her name. I also met the new medical assistant in the clinic. It was surreal as they remember when I was sick and not in the right mind. My pcp changed my blood pressure medication and I hope I don’t go into tachycardia because I am coming off the medication I had overdosed on. I am okay with this but am worried my blood pressure is going to be high the next few days as I adjust to the new medication. We also talked about top surgery and she will be contacting the surgeon’s office to move up the appointment once my blood pressure is better controlled. The last thing we discussed was going to PT to get reconditioned again as I am so out of shape. I get so easily out of breath and fatigued. I had to come home after the appointment because I am tired. I am going to take the Uber to the pharmacy that is a few towns over as I don’t think I can take public transportation right now. I am so fatigued.

I had Starbucks. I ordered my mocha and a sandwich for lunch. I didn’t make breakfast this morning because I was pressed for time. It took me forever to walk the couple of blocks back to the station. The escalator was out of service at the station so I had to take the elevator to the platform. I was so tired but I had to go to the pharmacy to get my new meds. I still have to go to the other pharmacy to get my psych meds. This will be the last time going there as I am switching to the pharmacy in the Square so it is more convenient for me and I can go to Starbucks after or before to get my caffeine fix.

It was weird walking around the hospital where I was hospitalized for two months. They had construction going on in front of the building I had to go to. They had knocked down the school that was there for at least 100 years. The whole block was blocked off and detoured. I had to walk further than I wanted to because of this. I had to get my glasses adjusted after the pcp appointment. I just felt like it took forever to get where I was going. I kept having to stop to catch my breath. I hope PT helps me and I see the PT I used to work with. I have a good relationship with her.

My baby sister called me. She is going to have her husband pick up my meds as he will be in the town it is in. I don’t have to go out again. I am so relieved. I don’t have to go out tomorrow. I just have three things to do: see the visiting nurse and my therapist and take my T shot. I also need to take my blood pressure. I need to record the readings for the next week or so for my pcp. She is monitoring me closely.

I have no idea what I want to have for dinner. I didn’t order more frozen dinners with my latest grocery order. I kind of forgot to. I just ordered deli meat and American cheese. I might make an egg and cheese burrito. It has been a very long time since I had that as a meal.

I am so fricken tired. I hope I sleep tonight. I have had bouts of insomnia since coming home from the hospital because I don’t have anything I can take for anxiety. I need to ask my psychiatrist on Thursday for some Ativan as I don’t have it. I hope he will give it to me. It really helps me.

about my hiatus

About my hiatus

I have been in the hospital the past three months. I was not in a state where I could write a blog. I was doped up most of the time and barely knew what was going on around me. I was sick with renal failure, covid, and infection called C diff. I was barely eating so they had place an nasogastric tube down in my stomach for a bit. I don’t know how long this tube was place. I had taken a pic of it sometime in Sept. I missed how the season ended for my Sox. When I came home for a bit, I thought it was the end of Aug but it was the beginning of Oct. I was home for a week or so before going back to the hospital for psych. I spent four weeks in the hospital on the psych unit. I got really good care there. I learned my top surgery was postponed and I was very, very devastated. It was good that I was in the hospital because if I wasn’t, I probably would have ended my life right then. I was so angry and frustrated as I didn’t have answers and had to wait for them. I had no access to my phone so I didn’t have the usual supports I have when I am home. It was extremely frustrating. The staff tried to help me but all they could do was sympathize with me. There was only one LGBTIQQ staff person on the unit and even she couldn’t really understand my predicament.

I have an appointment next week with my pcp to get medically cleared for top surgery. I really hope this conversation goes well. It will be the first time meeting my new pcp as a fully conscious being. The first two times I met her, I was still in the confused, delusional state. All I could do when I met her was blink my eyes and nod yes or no.

I am having difficulty writing in a constant stream of consciousness. It has taken me two days to write three hundred words for this blog. My thoughts are still hard to write with everything that I have been through. It was really difficult in the hospital as I really lost the ability to write. Writing has always been a coping mechanism for me and when I couldn’t think to write, it hurt, literally. I would get these headaches that felt like my brain was being crushed. It literally hurt to think. I got several migraines while in the hospital. I would wake up around 0330-430 every morning with severe migraines. It was terrible. The trauma of everything I went through was very difficult to process. I had become catatonic at one point.

I am still feeling wicked depressed and anxious at times. I am off all pain meds and off my Ativan. It is weird not taking meds around the clock like I once did for years. Now I just take it a few times a day as I am taking my blood pressure med three times a day and take the Latuda at dinner time. It makes me tired and I often find that by 1900 I am sleepy. But that could be because I have been waking up before 0500 most mornings. I find it hard to get back to sleep with these early morning awakenings. I am so much clear headed now than I was in the middle of October. My memory is still not there on what transpired the six weeks I was on the medical floor of the hospital. I just have these weird dreams/delusions that sometimes intrude in my head. One day while in the psych ward, I was flooded with memories and couldn’t make sense of things at all. The anxiety it produced was terrifying. I was convinced I killed my mother and a bunch of weird shit around my house. Taylor Swift music got me through a lot of the anxiety but while in the psych ward, I didn’t have my music to calm me so it was very difficult to cope. Now that I am home and have music again and my laptop, I am coping so much better. I am reunited with my online friends again and it feels so good because I was missed so much. I have missed blogging so much. I regret that I didn’t write before now but it has been hard finding my writing voice again. It has been a real struggle.

In closing, I am going to try and write a blog a day like before, even if it is less than 500 words.

therapy black out

Therapy black out

Trigger warning sexual abuse talk

I had therapy today and in the middle of it, my power goes out. I had to use my hotspot to connect but because I was in the dark, I didn’t turn the camera on. UGH. We were talking about trauma and specifically my mother’s abuse towards me. She sexually abused me from the time I was young, like age 2 to 13. She always had to look at my genitals or breasts. Now that I have been cathing for a while, I still have flashbacks to when she touches me when I touch myself. In my pediatric records, the doctor notes that my “vagina was closing” according to my mother but I wonder if it was really my urethra as it is in my vaginal opening. I’ve had a few UTI’s growing up and I wonder if it is because my mother stuck things in there. I also had a trauma medical procedure done to me when I was five. I had to be restrained physically and chemically for the doctor to do the procedure. All I remember is that I was screaming for my mother to get me, to comfort me, and when she didn’t come, I felt abandoned. I hated my mother for not being there. It was then that I started hearing voices.

Today’s WordPrompt from WordPress is transition. I was talking about my transition today with my therapist as my mother misgendered me, again. It invalidates me and makes me think my transition is not worth it. As I will always be seen as a “daughter” to her rather than a son. She thinks she owns me. I haven’t told her that I will be having top surgery yet. I want to make sure the insurance is going to cover it. I don’t want to tell her and then it not happen. It is five months away anyways. I am hoping that I can have it sooner but I got to know insurance will cover it first.

I am going for blood work this week so asked my pcp if they also need a urine sample because my test strip for home testing tested positive for white cells. I don’t know if my bladder is still inflamed or what. It still hurts though and even though I am starting the estrogen cream tonight, it could be a month before it has an effect. I was going to start last night but I got too tired to put it on. I was going to put it on after my last cath for the night but I didn’t want to get out of bed. I was comfy.

I woke up a couple of time during the night to pee and I was on the same schedule as my mother as every time I had to go pee so did she. I might have to hide the benzoyl peroxide I bought as I found it on the sink rather than in the cabinet. The last tube I bought was used by family members. I never had a chance to use it because it was used up before I could or it went missing on me. I have a breakout of zits right now and need to use it. For fuck’s sake, I bought it with my money and the shit is not cheap. Pisses me off that someone keeps using my acne products.

I wanted to make a zucchini chicken stir fry for supper but my ankle and foot are hurting me too much. My mother is just going to make the chicken with salt and pepper for me. I just realized I haven’t eaten anything since breakfast this morning. I never made lunch like I had wanted to. Therapy just got me so upset.

Chronic illness and disability causes grief

This was posted in the CRPS and RSD group on FB.

CHRONIC ILLNESS and DISABILITY causes GRIEF: by: Angela Piccolotti

No one tells you that you will grieve when you become disabled and/or chronically ill. Grief is expected when a loved one dies but you don’t expect it when you experience a chronic illness or disability.

The process is the same. You go through all the stages of grief: denial, anger, bargaining, depression, and acceptance. These stages are our attempts to process change and protect ourselves while we adapt to our new reality. The feelings are the same. The only difference is that instead of a loved one dying, it’s like you’ve died. Your life’s hopes, dreams, and plans are dead. Who you were and who you wanted to become are gone. Everything you used to be. All forever changed.

You break your own heart over and over again because you have hope of a restored body and life but no matter what you do you can’t achieve them.

It’s like you’ve died, but still you’re still breathing and you still have a pulse. You’re a ghost in your own life, a shell of your former self. You are haunted by your old self, your old life, your old hopes and dreams, your former health, all you used to be and all you used to be able to do. You remember everything you’ve lost. It’s heartbreaking!

You feel like you’re just taking up space. You feel so worthless. You can no longer DO. You can only sit by idle as life goes on without you being able to participate in it. It’s agonizingly painful!