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I left something behind in the hospital. Under pain and pressure my mind split and broke, but it's much more than that. I've been shaken to the core.

I feel like I should apologize for still talking about the affects of the hospitalization, like I should be over this. Anyway, what Dr. D and I discussed is how the medical events felt like my own natural disaster, my own earthquake. My entire world shook, right down to the core of me. It destroyed things I fear I won't get back. Further discussion brought out more on what part of me feels like it broke and was left behind in the hospital. What part of me was left behind in the hospital? We moved from the natural disaster example to one of home invasion w assault and robbery.

The medical events where sudden. No time to prepare for them. The events saw me lose my home, pets, possessions and part of my body and nearly my life. It's as if a robber came in and stole all of it and gave much physical pain while doing it. And much like a robbery victim, I am feeling a huge loss of security. That is what was left behind in the hospital, the piece of me I fear I won't get back. It is also a huge creative block as I can't seem to risk the way I did before. All I get out anymore is geometric shapes in color or black and white. If I can't risk, how will I ever truly paint again?

I know that I need to move more towards acceptance of my new life. I know that, but I grieve the loss of the old that seemed to be coming along better. I was losing weight! I was walking more, healthy enough to care for a dog. Yes, pain still consumed me but from where I am now, what I see is that the life was mine. It belonged to me and I had a sense of trust and security. The hospitalization changed those two things. While I don't worry daily that I'm going to die bc of a blood clot, I do struggle with it. I go back and forth between feeling super alive and feeling like I have one foot in the grave. It's as if I am running forward making progress, feeling good and I suddenly remember not to trust that feeling. And I'm right back in the hospital bed with the smells and sounds and the horrific pain. I'm back to feeling lost, insecure and shaken.

It'll be a process to get out of this spot and I know it. I just miss so much of what was. People pressure others to live in today, don't look back, accept what you can't change. I'm not there yet. I'm limping toward that goal, but I'm not at acceptance.

I go in to see Dr D next Tuesday. I was to go in Friday but that's not going to work.

We briefly discussed that my new CNA is testing her employer's patience to the limit. She has informed them that she will not return until May 2nd. I shake my head bc it's a bunch of bull why she requested the time. Due to her attendance issues she may get fired by the company. I'm also frustrated with her attendance problems.

Faith

My blood and ANA are better than projected. There are no new blood clots and no infections so things are good. I'm pleased with today's appointment.

I went to see the Hematologist but canceled my therapy appointment bc I couldn't do two heavy assignments back to back. As a matter of fact, I had a more physically taxing appointment than expected bc I had a wheelchair malfunction and had to walk a good distance in a short period of time. I'm uncertain who put the Cancer Center (Oncology /Hematology Center) where it is but it was a terrible decision. It's far. Parking is terrible and if you have a wheelchair malfunction you're screwed! I was screwed but I still made it to see the doctor.

Because pain has been relentless, he asked if I want to go to the pain clinic. I said no. I said I'd continue doing what I'm doing on my own. No thanks to opioids. I'm not interested in addiction problems on top of all this. I fear ending up like others w Lupus, in rehab bc they got addicted. I can't risk it. For now, for me, the decision is to stick with homeopathy, all natural, non-addictive substances and teas.

The doctor calls me his miracle and smiles really big at me. I love it. He spent 3 months with me, every day checking in and doing what he could to save a case he called a 'hemaglobin nightmare.' lol šŸ˜Š At the time I told him that I'm the patient he trained for all his career and that I would need him to truly 'show up' and 'do this thing.' There was a lot of pressure but he and the rest of the team did show up for the job! I'm proud of them.

Today I'm tired and in pain yet I feel very alive. I finally got a meal down that I kept down. I had to sleep for several hours after the appointment but that's ok and nothing unusual. It exhausts me to leave the house. It happens but I'm in a pretty good place today despite the physical limitations.

Faith

After the amputation there has been significantly less CRSD pain. I will not attempt to explain it bc I don't know if it's a combination of the nerves and pain medication making a difference. I simply don't know why there's less CRSD after the amputation, but there is. I could be bc the nerves down there died. I just don't know, but I believe there is a significant difference nearly a year after the surgery.

The last few days there's been Lupus pain and pain associated with nerve damage. There's no burning pain like what happens when CRSD rears its ugly head. The Lupus pain aches deep though. It's relentless. The last three days have been pretty bad for me. I'm not just fatigued I'm weak, foggy in the brain and hurting from head to toe.

As if Lupus isn't enough, there's the anemia that I'm dealing with as well as lack of appetite for the last few days. I forced myself to eat two days ago but I've had nothing but Saltines since. I'm not hungry. I'm just tired, so tired at times that I have to sleep right then and there!

Soooo, those are my complaints for the day. Argh. It's a Lupus life!

1

The nurse came out today. I asked her to speak plainly. She said, "You're not going to get better." I burst into tears. It's not like I am unaware, it's just hard to hear. She added that I'll have good and bad days. I still cried. It makes me sad, this new life. I'm still mourning the old. Sometimes I'm ok with this new life but today I'm not.

In therapy we talked about the difficulty of accepting that this body sucks. We talked about what caused the falls as well as feeling pressured to walk. The pressure is mostly, mostly internal. I see people with amputations walking around or elderly people hobbling and feel shame that I'm in a chair. I "should" be up. Then I think, Faith, you can't compare yourself to anyone else! I know I have extensive nerve damage that can't be seen. Lord knows I can feel the pain, but it can't be seen. I just feel so bad about myself right now.

In session, Dr D looked at some of the art by Robert and said it's disturbing and creepy. Robert thanked him. Dr D suggested that he and Robert spend more time together in sessions bc he said he thinks Robert has a lot going on in his head that he needs to get out. The thing is, Robert remembers the sessions not long ago when cursed Dr D out for acting like an idiot about the CNAs. Robert does not trust the man right now. He's certainly not going to sit and confide in him. More time needs to pass between those terrible sessions.

CICOA is coming out Thursday for my review. Wow, what timing. My doctor is requesting that I have Saturday care too, which CICOA and the nursing company will get approved. This means I'll have 6 days a week that a CNA is here. I'll have a different Saturday aide than during the week. This means trying to find a second aide that fits here. A second aide the inside people have to hide from. Let's hope it's not too long b4 they find someone suitable. Maybe it'll only be a few weeks until I heal from the falls, then maybe I can go back to 5 days a week.

Today I'm tearful and sad. I'm also physically tired which makes a difference in my mood.

Dinner was beautiful. I had portobello and goat cheese fettuccine with fresh spinach and tomatoes. It was inspired by a frozen dinner. Tomorrow is homemade deep dish pizza. I still love to cook.

Faith

2

Content : Suicide discussion. Physical updates. Flashbacks of abuse. Abuse.

The nurse will be here tomorrow. I've fallen 3x in a week so things are a bit messy right now.

I've been told I pushed too hard, tried to do too much.

I'll see Dr D tomorrow as well. He is concerned about what he calls hallucinations and what I refer to as body memories. This is the second time he's asked if I'm suicidal and the second time I've told him no. The more suicides I hear about the further away from a possibility it is for me. George Foreman's daughter and 3 survivors of school shootings recently took their lives! It hurts and reminds me of my brother's suicide. How could I make the decision to kill myself, knowing what I now know? Years ago it was an option but not now. Not now.

During flashbacks I smell blood and urine. I can feel her hitting me. I can smell her parfume. My stomach cramps and I vomit.

I'm feeling a bit down right now. A little lonely, too.

I should mention, I like my new CNA a lot. She's on time, works and drinks tea with me in the morning. The funny thing is, there are a few teas that are just for me. I don't share them. I finally got tea in the mail from Uganda. It's awesome and just mine. I have Japanese Orchid tea that is exclusive as well. Most teas I'll readily share but some are saved just for me.

Always serve tea.

Jordan

1

Content - Extreme physical abuse, siblings abused, emotional abuse

We talked about the dream I had where my mother beat my sister without mercy. It was brutal. She did so in a separate room from me, my cousin and 2 aunts. It was so bad and went on so long that I risked myself by knocking on the door to interrupt it. It worked and she stopped.

After the mother and sister emerged the cousin told my mother that I had made negative comments about her. I denied it. The mother took me in the room behind closed doors where she questioned me under threat. I swore I didn't say it. She believed me and let me go unharmed.

When we left the room the cousin admitted she lied. Everyone flipped out and yelled at her, why, why, why? She said that what my mother did to my sister was wrong but that my sister shouldn't have to do it alone. She said if I was beaten too then there would be an equalizing. My sister and I would be on even ground, sharing an experience. She said that it wouldn't be that one sibling witnessed the humiliation of another but that both would know and so one wouldn't be in a higher position than the other.

The dream was interesting to say the least because it touched on how it feels to watch a sibling abused and what it feels like to have your abuse witnessed. Someone saw the emotional and physical impact it had and that in itself is abuse and traumatic, to have someone see you like that. It also touched on the trauma of watching the horror show helplessly.

In the dream we were all at the mercy of the mother. The answer to making sure my sister and I were emotionally connected was for me to be beaten. Never did anyone step in and say, "You can't beat them this way" or "What you're doing is wrong and we aren't going to allow it." No, the answer was to beat me so that neither one of us was alone. One would be alone in that she watched the abuse. The other alone in that she experienced the abuse.

Dr. D and I discussed how my mother rarely went off the rails and just started beating us. She was more focused. She beat the palms of our hands, our feet with a dowel rod quite often. She beat our lips with a wide tooth comb. Rarely did she slap us in the face. When beating us with the dowel rod while laying down it was focused on our back area: legs, butt, back. There were times we got punched in the face but it was rare. My mother's rage was focused on areas of high pain, with an item she said she used because it hurt.

Robert spoke to Dr. D today. I can't say it was a good session at all. Robert is still very protective of us after the suicide issues with the CNA. Dr. D asked why we didn't report the CNA sooner than we did. He then said, "You usually protect yourselves so well." Robert reminded him that the CNA his the 'mother cord' with her suicide threats. We felt responsible! We felt guilty! We felt small and like we were in fight or flight. When it got bad it got bad quickly and we were in fight or flight. Why didn't I tell? Well dang it.....(sigh) what kind of question is that? Listen, I have mother issues and this girl played right into them. I'd even look her in the face each morning to see what kind of mood she was in to see what type of day we would have, just like my mother. If she cried then I cried with her. If she (the CNA and my mother) wanted to laugh then we laughed. I did exactly what I would have done had I been in the presence of my mother because I still have mother issues. She's the only person in the world who could make my knees shake. I told on the CNA when I could, period!!!!!!!!!!!

Dr. D and I talked about hallucinations recently. I've been smelling blood and urine even though its not there. There's been a bit of depersonalization as well.

You know what? I'm not strong enough. I'm just one person and I've been through a lot lately. I've had so little time to recharge from the hospitalization, the amputation and the new life I'm leading. There's been so little time to get firmly rooted, then for the whole suicide thing to pop up and her behavior to mimic that of my mother is just too much. So yeah, things are messed up right now. My head is messed up right now.

Robert and Jordan

1

The week has been quite. My regular CNA has been out for a while leaving me with only 2 half days of coverage. It's been difficult to say the least, but it's been quite, no major drama.

Saturday is one of the days I was covered for 3 hrs w a CNA. After taking care of things here we ran to Walmart. Neither one of us thought about going in the afternoon on a Saturday and how busy they'd be! We got there and the motorized carts were all in use. I decided since I'd gotten myself to Walmart I'd try to walk a little bit. So I did. Turns out I walked for 45 minutes!!

After walking my lungs hurt and my feet were tired but I was not in as bad shape as I expected to be, or so I thought. I came home and immediately went to sleep for most of the night. When I got up to go to the restroom, oh my goodness pain!! My feet let me know that I over did it!!! So, most of Sunday has been babying the painful amputation site. My left foot reminded me that it too was traumatized in the hospital and it too was over worked Saturday.

I learned that I can walk in the store but I have to be aware of how long or I'll pay the consequences like I am today. And yet I'm happy I figured out that walking stabily isn't in my distant future but much, much closer.

I know I over did it but I'm proud I took the risk to walk.

Jordan

2

The nurse came by today to check on the foot that I accidentally hacked at while managing it. It looks good, she said. It's healing nicely.

Right now there are no major worries, which is kind of a worry to say. I feel like as soon as I say I'm ok that it's a cue for things to go haywire.

The only issue I have right now is my lungs, fatigue and endurance issues. No blood clots or anything like that. Fatigue goes with the territory but my lung capacity situation does not. She gave me some exercises to do and told me she'd be back in a week.

We're still working on my walking and stamina. I still can't feel much in the legs and feet but pain, and they do not desire to hold me. I concentrate very hard while walking but I tend to forget where one foot is, so it gets shut in stuff or left behind and stumbled over.

I'm trying to get used to the feeling of walking in shoes. What a strange feeling. I look like a dog when you put snow boots on him. The control is loose and wild, like I don't know how to place my foot. I walk much better without shoes.

In CNA news, it's been a quiet and relaxing week with a timely, good worker. I DON'T get to keep her because she has no car insurance and therefore can't take me to the store or to doctor appointments. However, she's on time, works well and does not stress me out.

Ya know, sending me a CNA without car insurance is a problem with these companies. Sending me a great CNA without car insurance is insult to injury after the last fiasco! I wish I could keep her but I require a CNA with legal transportation. The company is well aware she doesn't have insurance and they let her drive other clients around. I don't do it though, so, I lose a great fit again.

Despite several extreme cases with my care givers, there were a number of temporary people like her to come through here with out drama. I've been verbal on the blog concerning the difficulties but not so much about the ones like I had this week. I intend to remind Dr D of the many times I said to him that I had a quiet week with a CNA because I refuse to have it sounds like I can't be happy and satisfied. Yes, the issue of guilt and fault still troubles me, just not to the same degree. So, while I recognize the good CNAs, it is the extreme drama that disrupts and unhinges me.

I'm pleased with my nurse. She is always professional and kind. I hope to have better lung functioning and improvement with endurance when I see her next Friday.

Faith

2

It's not been a good day to say the least. In addition to firing someone I really liked, I jacked up my already jacked up foot. This is the same foot that I smashed in the door.

Well, I was using the pedicure tool suggested by the surgeon and accidentally ripped a two inch hole from the amputation site. I didn't feel it at all. I looked and I was bleeding. (sigh) I put some medical grade honey on it and a bandage and let it go. I don't know if I want to use this thing after this!

At the time I was quite emotionally devistated by it. I also thought I deserved to be hurt bc I fired someone who is hurting. There I was bleeding and thought, good, this is what happens to people like you! It took a second to get my head straight and realized just how triggering her situation has been. No, I don't deserve to hurt and neither does she. It was an accident, not a punishment! Not a sign that I'm a bad person.

It'll take a moment to wipe the visual of my CNA hurting herself. It wasn't a good thing to see. It'll take a little bit to accept my new normal of not getting the feeling back in that foot properly. I try not to let it get to me. I try to take it in stride ya know? But sometimes the realization of my physical condition hits me hard, like today.

So I'm going to to take a few deep breaths then do some art work. I will turn on some music and let this moment pass. No stuffing. No running but also, I refuse to just sit in it. I'm about to work it out the best I can, with art and tea.

Faith

1

Ouch.

I went to the grocery store. When I was getting back in the car I thought I was all the way in but my bad foot wasn't. I shut it in the door. That's a pain that's going to linger.

The problem is, I can't feel much other than pain in that foot so it's hard to tell where it is or what position it's in. I found out real fast that it was in the door! Now it's all red and inflamed and ugly looking. Not good at all. My nurse will be here to look at it.

In better foot health news, I've finally got my pedicure kit the surgeon suggested. This will help with skin thickness on the incision area as well as help the amputated area look nice overall.

I've said before, I'm conceited. I can't go around looking like anything at all. I'm not an anything - will - do, kind of girl. Nope. It matters to me that the amputation site is soft and smooth, so I am not ashamed to go without socks when friends are around.

This is the second time I've crushed the amputated foot in the door. I've got to make sure I know where all my body is at any given time. Lol. Oh me!

Jordan

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