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!
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.
Long PT session and other things
I woke up with my arm very sore. I don’t know what I do in my sleep that makes it angry. I had my coffee and my biscuits. I had an appointment with my psychiatrist that I had to be at my PT place for because the times were close together. We talked on the phone because zoom was not a good connection. He agreed to give me the 90 day Latuda and refilled my Ativan script. He thinks my frozen episodes are anxiety related and wants me to try and take an Ativan before it happens or when I feel it coming on. I am glad it is not a medication issue.
PT was not so great. My arm is more sore after seeing her. We went to do the stick exercises and my bicep muscles flipped out. I hurt so much. I thought I was going to cry. The muscles are so tight and sore. I got to put more heat on them. I am to lay off the exercises for tomorrow but to do them half step the following day. The PT said it could take up to four months before I am better. Fuck. I am two months into this so hopefully I am halfway there. The ortho was vague in his notes about how to proceed. I see the shoulder guy next month. Maybe I will get better answers from him. I never broke a bone before so I have no idea what time it takes to heal. I know that lifting my 5lb weights are off limits right now. I will only aggravate the muscles more than they are irritated.
My psychiatrist said that a secretary will be calling to book our next appointment. That if I don’t hear from them in a few weeks to send him a message. I asked if it will be in person and he said no. His department is still virtual due to the new threats. So weird because I will be seeing my therapist tomorrow. I told my PT I was seeing her and she asked how long has it been. I said more than a year and a half. I have my outfit all picked out. I am going to wear my new cardigan with my jeans. I haven’t decided if I am going to wear my khaki colored jeans or blue ones. I will decide tomorrow.
My mother had supper for me when I came home from PT. I had just planned on making a frozen dinner. I had hot dogs and potatoes with an artichoke. It was good. There was also chicken cutlets so I had one. Now I am going to color a dinosaur and post it to Twitter.
Can’t sleep so I am up at 0530
I feel like I have been up every fricken hour after having weird dreams. I gave up at 530 and at 6 had some coffee and a banana bread biscuit from Belvita. Nothing is going on on Twitter so I decided to write.
I honestly think the Flomax I was taking was causing urges to be strong. Since discontinuing it, my urges have been way less than they are and that makes cathing a whole lot easier. I haven’t experienced any bladder spasms so taking the tolterodine was kind of useless.
Yesterday afternoon I had a bowel explosion. Shit was everywhere and I got it on my hands while wiping. It was very soft shit so I couldn’t hold it in. After I cleaned my underwear and the toilet, I took a shower to clean myself to make sure I was clean. I felt so awful after this happened. I hate when it happens. I have no control of my stool once it reaches the rectum and enters my anal canal. I just don’t have the function of holding it in. I have nerve damage to that area. I have been trying to be gentle with myself. I colored a difficult piece of art yesterday after the accident. It took me a couple of hours to sort the colors out. And then it took me a couple of hours to color. It took my mind off my troubles as I was thinking about what color to use next. My finger got pencil coloring on it and I felt like a painter doing work.
Today is supposed to be sunny and hot. I plan on going to the mailbox early to mail my ballot. Every time I get the mail in ballot I have to do it like three times before it is accepted. The first time I didn’t receive the ballot, just the envelope that had to be signed. The second time I received the white envelope and the ballot nothing more. Third time I received the yellow envelope and white envelope with a note saying that my ballot had to be in the yellow envelope and signed. Hopefully this will be the last of it as the election is coming up soon.
I need to shave my head and face today. I have stubble that is turning into a beard. I have finally mastered the goatee so I need to shave around it. I want to use the electric shaver but I need the mirror and I don’t know where it is at the moment. I like that I can shave in my bed. I can’t do my head with the shaver because it has hair dust that stays and I will have to wash my head afterwards. Besides, I get a closer shave with a razor than the shaver. I might use my five blade razor today. Just hope I don’t nick myself with it like I have in the past.
I bought some new books that I want to read about medicine history and the enslaved people it experimented on. The book got delivered but I don’t remember where I put it. I think it is in the unopened Amazon box. Maybe I will read today rather than doom scroll on Twitter. It has been a while since I read a book. I am still working on the MLB book. It is a big book with over 500 pages. I have learned a lot but I don’t think I can write the book I want to using this book as a guide. It doesn’t give me the right information I am looking for. I don’t know where I can find it. Seems teams names changed every year before 1901 as owners changed hands. Some teams were dropped off because they didn’t collect enough tickets to be worthy of playing so their players were switched to other teams that did collect enough tickets. It was kind of confusing at first but I think I got it after I read a little more. I have a reading challenge going on like I do every year. My goal for this year is to read at least 12 books. I tried to do the 20 books but always came up short. I figured 12 would be one book a month but I haven’t finished any book since Trauma and Recovery by Judith Herman. I have read 6 books so far so I only have 6 books left. Should be easy if I get off Twitter enough. I am a quarter way through the MLB book. I also bought Jim Acosta’s book, Enemy of the People. I can’t wait to start that one.
I wrote to my psychiatrist to tell him how awful I feel about my bowel and bladder issues and how I don’t think my therapist is going to be validating me on them. I feel so alone about it. Since stopping the medication, I have to keep myself on a schedule or otherwise I will forget to pee because I don’t have the urge. Also right now having a full bladder causes me abdominal pain because of the hysterectomy. I still have the stitches in me. I tried taking it off but it wouldn’t come off so I just left it. I am entering my third week post op. I don’t know when the stitches will fall off. I need to ask the nurse that when I talk to her hopefully tomorrow.
I bought some marigold seeds that I want to plant. I had bought some soil and terracotta pots for a seedling my cousin gave me but my sister was able to plant it in her pot so my pots have been sitting on the porch all this time. I might give it a go sometime this week. Marigolds are my favorite type of flower.