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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 😊 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!

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

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

I didn't get to sleep until 9 this morning bc my pain levels were too high. I tossed and turned and laid here looking at the wall. Finally I slept and woke at 6pm. The entire day is over. I'm not discouraged by this today bc the bigger picture is this - I've got few immediate responsibilities which allows me to have the time to be sick. I'm grateful for the position I'm in that allows life to stop and let me recover. Today is a day of recovery.

Good stuff that happened this week:

I sold 2 dolls and an original art piece.

Warm dinners were made all week here at home. I loved it.

I had pancakes 2 times this week. 😊

Homemade hot chocolate during the cold snap was wonderful.

I've been able to avoid prolonged emotional triggers by processing them and letting them go.

I bought a tiny wheelchair to sit a doll in. A friend of mine is having heart surgery and I can't be there, so I'm sending a representative. Froggie will go for me.

Faith

7

uprooted sundrip

I feel uprooted. Everything is different. My home is great but I've not laid down roots here. Most of my possessions are new because the old got thrown out. The only photo of my father that I had was thrown away accidentally. It is gone forever and it hurts.

My dishes, terrariums, plants, shoes, bed, sheets, furniture, everything is different and new. My frogs are new, fish are new. No dog or cat anymore. Heck, my laptop and phone are even new. I realized I have few things that I am emotionally attached to because I've not had them long enough. It feels like everything has new roots, nothing is stable, consistent, long term, dependable. 

I'm new. I've changed physically and emotionally. My eyes haven't stopped watering since the amputation. They water nearly non-stop. 

I feel like I'm complaining but all I'm trying to say is that laying down new roots at 47 is difficult.

Outlook sundrip

Art supplies are new. Again, these are observations not necessarily complaints. I love my new art supplies, especially the Winsor and Newton watercolors seen in the photos. Winsor Newton puts out a superior product that I totally love and yet there's a feeling of sadness because they don't have longer history with me. It would seem their only history with me is the hospitalization. 

It hurts my heart to think that what all the new things have in common is trauma. So I've got to try and change that view to one more positive, something like this: All the new things are associated with SURVIVAL not near death. They are evidence of life, of a future, of deep, deep roots that helped me walk to this very day. 

Jordan

In the hospital I felt guilty for putting my friends through worry for me. I felt bad that they worried for five long months, especially around surgeries. When things would get harry I felt horrible for putting people through tears and worry.

In this art piece that expresses the guilt, I put hanging people on the shoulders of a figure standing behind a smaller faceless figure. Both figures have an amputated foot with darkened skin around the amputation site. The figure with the sunflower crown is holding a star in her left hand. 

Guilt fma

In the hospital I worried that the doctors would realize that they were putting forth a lot of effort for a nobody, and when they found out they'd stop caring for me. This piece expresses the issue of low self worth. 

The painting shows a split face which is typical in my art anymore. It shows two faceless figures and a large sunflower at the bottom. Also of note is the yellow hair and orange face of the faceless figure with spike hair. Again, yellow symbolizes disgusting things and there were plenty of gross things in the hospital. For her hair to be yellow is very significant for me. 

Nobody fma

Both works were created after the amputation and are in watercolor and ink. 

The painting above, where I express myself as No One is interesting to me since I had an alter named No One who always painted herself as faceless. That alter changed her name to Jordan and is interestingly enough, the main personality in the group. She is in affect, my face. 

The No One painting is also the inspiration for art where there are two faces as opposed to just a split face. I've been doing that in art therapy a lot lately. Dr. D and I talked about that last Friday. 

Faith

2

I feel a quiet desperation inside.

I've had nightmare for the past few nights and have had a hard time waking up during the day. I'm exhausted.

I don't feel worthy of much. I sometimes hate myself enough to want to slice my arms to shreds. I have not and will not, but I recognize the symptom for what it is.

Sometimes I think the only reasonable thing to do is give up. Giving up doesn't mean dying.

I'm still creatively constipated! I've got a beautiful new art table that I have yet to use. I'm still working in my art journal. What's wrong with me that I can't paint? I'm depressed, maybe even lonely. ...continue reading "Desperation and Depression"

1

Dr. D and I talked about the CNA that showed up today who was absolutely perfect. It went so well I had to call the supervisor to tell her so. That's when I found out I don't get to keep her but for one more visit. I hate that. The CNA and I also did some much needed organizing of the walk in closet. I so needed that help. You know what she did that felt so good? When it came time for me to soak my foot, she got a wash cloth then got real close to my foot and asked if I wanted her to wash the amputation site. She didn't act disgusted at all. I needed that. I really, really needed that. I didn't let her do it, but the gesture was healing. ...continue reading "Therapy Review: CNA. Butchery. DID."

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