Tag: chronic illness

Pic/meme

by Midnight Demon, posted in blogging, CRPS, depression, disability

I got my haircut today. I’ve been up since 4am. I had a hard time sleeping. Then I just decided to stay up. I asked my psychiatrist about increasing the mirtazepine and he agreed. I’ll put the increase in tomorrow’s box when I do the meds for the week.

My ankle still hurts but not as bad as last night. I am tired. I made the steak for dinner. I cooked it too much. It was a thick piece and well I am still learning. It’s not often I make steak. If it wasn’t raining I would have grilled it. My knees have been aching most of the day. It is cool but the rain is making things muggy.

I read a chapter in the Critical Suicidology book and wrote a message to my therapist. Problem was it was too long for the stupid web message so I had to take a pic of it and send it. I don’t know if it will be readable. I have the document saved in case she wants to read it for Monday’s appt.

I miss my mother. I’ve been wanting to call her the past couple of hours. It has been tough. I never thought I would miss her phone calls asking what I was doing or where I was. I came straight home after seeing my barber. I had no plans today. I might go south of Boston tomorrow to visit my cousin. It’s been a long time since we last saw each other. I hope I don’t get a migraine because of the rain. I told my cousin it will depend on how I feel. I am glad they are understanding. I hate canceling at last minute because I don’t feel well. But that is life with chronic illness.

therapy black out

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

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

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

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!

groceries and more groceries

by Midnight Demon, posted in blogging, cauda equina syndrome, chronic physical pain, CRPS, depression

Groceries and more groceries

I had my groceries delivered today. I ordered a lot of Gatorade and Powerade to last me for the month. Every month my mother asks me why I buy so much and I tell her it is my monthly supply. I brought up all the bags except for my cereal. I totally forgot they were there until I came home from the pharmacy and saw them there. There are like ~7 bags left to bring up to my room. I have been doing it by myself, which is taking me some time because I have to take breaks. My arm is so damn sore but it is a good sore not a bad one.

I sent my therapist a message last night about how I was suicidal but I was too tired to kill myself. I said I was pathetic. She responded and said that I wasn’t pathetic. I need to address the pain. I asked how and she said by talking about it and using coping skills. I hate coping skills. It is just this broad umbrella of things. It is like saying you need a screwdriver for the screw you want to tighten but you have so many damn screwdrivers you don’t know which one to use. It is really frustrating. And when you are already upset and looking for something to soothe you, you want something right now that will work not something that will frustrate you more.

I ordered my glasses and will file a claim with my insurance company so I can get reimbursed. Hope it isn’t a hassle. I have not done this before. They should be shipping out soon. I just hope the frames fit me. I ordered a small so we’ll see. Friday I need to start the process of changing my bedding because I spilled Gatorade on my blanket and sheets last night. I grabbed the bottle a little too tightly and it spilled. Most of it got on me so I had to change my shirt.

I am in a lot of pain with my shoulder because of lifting all the bottles of Gatorade and Powerade I bought. I don’t think I can lift the remaining bags tonight. I still haven’t changed back into my PJs from when I left for the pharmacy. I might keep on the thermal socks. It is supposed to snow tonight. I hope all the snowing happens tonight and not in the morning. We aren’t supposed to get that much, only an inch or so but walking in it can be yucky. I rescheduled my appointment with my PT for tomorrow morning. I hope I sleep tonight or getting up is going to be difficult. I also scheduled an appointment with OT for January. I thought it was for pelvic floor but it is for cathing. It is with the same OT I saw last year.

I think I am going to have to double dose the Miralax as the new meds are really constipating me. And because I mostly stand when I cath, I am not using the same muscles to poop. I was able to crap a little today but it wasn’t enough. My stomach feels so awful.

I have three updates and need to restart my laptop. I just installed Win 11. It is okay so far. All my programs seem to be running okay. Tomorrow in between appointments I will be going to see a locksmith about getting some keys made for the screen door that was just put on. It is an odd shaped key so I hope they can do it. I don’t know who else will be able to do it.