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!
Feeling depressed and another shitty night sleeping
I had a shitty night sleeping. I woke up around 0130 and had to pee. I stayed up for about a half hour then went back to sleep after drinking a half a bottle of Gatorade. I shouldn’t have done it, I know, but I did and then I woke up two hours later to empty my bladder again. This time I was awake. I had a bad dream just before waking me up and I was still pissed off at the doc appointment yesterday. He asked why I was on Latuda because I don’t have a diagnosis of psychosis in my file. I said it is because I have depression with psychosis. I am trying to shake this guy off but he is in my headspace for the time being. I told my mother about the appointment and she said I was on too many meds. Fucking a. I really felt crummy after that.
I’m still waiting for my catheter company to tell me that my insurance will cover the new prescription order. I received an email from them this morning so I don’t know if it was one of the automatic ones or if the insurance has gone through and they need information from me. I then cringed and called the dentist to see what the next step is for my tooth. She said it was a two part procedure and it is expensive. I asked if we could do a partial or a bridge or something. She said she would ask the dentist and get back to me. So I am waiting.
I need to take a shower today. It has been more than a week since I last showered. I have been feeling some gender dysphoria lately so kind of why. I am not happy with my body at all, especially the hair growth on my upper body. I sent a message to my doc asking if she knew why the pattern was inconsistent. I seem to have more hair on my left side than I do my right. I also hate the hairy boobs I have. Just makes me depressed. I can’t believe July is almost here. I see the top surgery surgeon in a few weeks. I have been aware of how nipples are on men’s bodies and been taking screen shots of the ones I like that I want for myself. I don’t know if it will be a graft or just a resize of my current nipples that they will do. I really hope that my weight doesn’t get in the way of this. It will just crush me if it does.
I am waiting for the pharmacy to text me saying my meds are ready. They have been “in progress” for several hours now and it still isn’t done. Last time it wasn’t ready till after 1400. My ankle has been throbbing since early this morning when I was up. I last took my pain meds around 0400. I have one pill left. I don’t want to take it until I know the pharmacy is going to have my meds ready. I got to fucking call them. Every fucking month it is something and always with the same meds. Always. Such a pain in the fucking ass.
A busy past few days
I have a busy week with a lot of appointments. I had two today, back to back. Tomorrow I see my pcp to discuss my cardiac markers and a BP med. I am hoping she listens to me and puts me back on labetalol rather than another med. But if she isn’t open to it, then I will go on what she suggests.
I saw my TG doc today. She had a fellow interview me first. Things went well. The fellow tried to get me a 5mL vial of T but the pharmacy just filled a 1mL vial. I have enough T to last me the next few injections. She also referred me to plastic surgery so I could get a top surgery consult started. I am glad because my pcp never responded to my request from last week. The fellow also answered my concern about whether T had caused the dislocation in my shoulder. It didn’t. I am glad. She did say that because I had removal of my ovaries, I have to be concerned about my bone health. But I am still young enough that I don’t have to go for a bone scan. The only bone scan I want to do is on my shin to see if the CRPS has spread to it. I have been having severe pain for no reason and it is worrying me.
After my TG appointment, I had the chronic pain group, which had already started. I was about fifteen minutes late but they accepted me anyways. We had a good chat about families not getting our disabilities and I told them how rough it was living with my sister who triggers my PTSD often. I also came out to them as transgender and they didn’t seem to care, which I was glad about. We also talked about how our families don’t believe our pain and disability. It was a good group. I did talk about how my therapy session went and got support around it. There maybe future discussions about CBT.
I had therapy yesterday and we talked about my ED visit went. I told her I was freaking out over my lab results, thinking I was having a heart attack. Tomorrow when I see my pcp I am going to discuss what the lab values mean as having this marker in the blood indicates some kind of cardiac injury. I also asked my therapist if we could role play a bit about me asking for the blood pressure medication that I want so that I don’t get turned down. I didn’t want to come off as obstinate but I really think this med will be better as I have been on it before and had little to no side effects from it. We talked for more than a few minutes about it and I wrote down how to approach my pcp on this issue. I just hope I remember.
We then talked about how I feel we are divided and not on the same page about things. That is when she said to me “take the reins”. I was like what? She repeated what she said, adding that I was in charge. I was flustered. I couldn’t believe what she had said so I got my journal that has the notes to the bCBT book and shared with her what a structured session looks like. It had listed “agenda” and then went on to list other things. I asked the author of the book what is meant by this and he gave me a more descriptive outline of what the session looks like. I think there should have been an “:” to indicate this. So I went to my blog for the crisis response plan (Suicide Crisis Response Plan – midnightdemons7). This needs to be reviewed. In it, it said that if I get specific I should contact my therapist or psychiatrist. I should ask them if this is right or if I should just go to the psych ED. My therapist might not be available but I will bring it up with her when I meet with her next as that is when we will start with the new sessions I guess. She agreed to allow a new skill to be introduced and to practice it while in session. I think this is going to work out now as this seems more collaborative than what it was in the past where I spent the time just talking or not talking during session. I asked her if she was more DBT oriented or CBT. She said she was CBT so that will help a lot during the next few weeks. I am glad this is happening because I really felt like we were going on different directions. It just seemed like we would talk about stuff and then she would ask what is helpful but never follow up on what was helpful during the week or if I had practiced or done what was helpful. Mostly that meant me reading this manual for discussion. I felt like I was alone in reading it but it not going anywhere. I also felt like it was pointless to read if I couldn’t share what I was reading.
I have a busy week. Tomorrow I see my pcp and that is going to take a lot of energy. I wanted to get my hair trimmed but my barber had a death in the family. I contacted him today and he said his sister died. Her breast cancer had come back and it wasn’t a good prognosis. I am surprised she last this long. It was more than a year since she was diagnosed with this. I set up an appointment with him for Sat. Fri I plan on making his favorite dish, chili cornbread. I just have to get the ingredients. I will Thurs after my session with my psychiatrist. I will also ask him if I can contact him in an emergency as we have never discuss this before. There wasn’t really a need to as I really haven’t been in crisis since he became my psychopharmacologist.
By Sunday, I am just going to rest as I will need it. I don’t know when I will be able to read. I got hit with a flare up and couldn’t finish this blog yesterday. The flare was so bad that the bones in my foot and leg were aching very deeply and intensely. The pain in my leg is higher than it was and I fear that the CRPS is spreading. I want to contact my neuro and see if I can get a bone scan to see if it is CRPS or something else. I don’t think an X-ray will show anything as It only hurts when my ankle or foot is flared up and when I am resting on my bed. It doesn’t hurt when I put weight on it or walk on it. It is a very unusual type of pain when it comes on. I am feeling better because I got some sleep. I woke up around 0030 and had something to eat as I was hungry. I had honey nut cheerios. I emptied my bladder because it had been more than five hours since I last emptied it. I probably will have to go again as I drank the milk in the cereal and had some water afterwards. It’s 0130 now and I am not so tired. I might read the book for a bit until I am tired and can get back to sleep. My pain has finally settled down.
I was having a hard time last night. 4 family members were upset with me because I didn’t bring the recycle down. I had asked my niece to do it and she never did so I got the blame. I got called a hoarder and it really hurt because i know I am not.
Today I slept until my bladder was gonna explode. My sister was in our bathroom so I had to go downstairs to use my other sister’s bathroom, which meant not cathing because she doesn’t have catheters in her bathroom and I didn’t grab any before leaving my room. I had something to eat and coffee. I feel like I could go back to sleep. I actually went to bed around 7 last night but I didn’t sleep. I felt guilty going to bed so early.
I had a difficult day as I got my haircut and then had to go to urgent care for my blood pressure issues. I was having side effects from the blood pressure pill and the doc wanted to put me on a Holter monitor. I said no. My new pcp is going to see me Thursday to start me on the beta blocker lebatalol. But I got to be seen in person. At 0830. Yuck. Next week is going to be a busy week so i hope by Thursday I have some insomnia so I can go to the appt. Otherwise i could sleep through the appt.
I am going to try and shower today. I want to shave my head but don’t think I can do it. I haven’t brushed my teeth in three days. I am so bad when it comes to this stuff. My new toothpaste has become community property. I am not happy about this. I am so tired I just want to go back to bed. I took my morning meds when I got up at 2pm. That is really late to take my twice a day pain med. I just had a really hard time sleeping during the night. I kept waking up to pee.