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Several walls got knocked down. I need to figure out how to build them up with security but also openness.

Dr D and I talked about how I now see life as before and after the hospitalization. It's as if it blew a hole in the middle of my life, my reality and sense of self to the point that I struggled to pick up and move forward. Today we talked about building with fallen blocks and reproducing what I can and reinventing what is broken.

My goals have to be a bit different for now. I don't have the physical ability I had before the hospitalization and amputation. I now require daily inhome assistance and spend more time in bed than not. Life with a helper will continue to be tumultuous and stymied while the rest of my existence begs to move forward.

How do I build a new life? I honestly thought that was the question I needed to answer, but I don't need to start a new life. I've got so much of the old still. I've got all my experiences, my hopes and wishes still intact. Those were not amputated. Oh, it feels like everything was, like that hospitalization crushed my bones. But really, all of the true me is still here. The parts that fell apart, that broke during that long 5 months can be mended or worked with in pieces. There is no need to "start over."

We talked about fearing that the art in me was somehow lost during the trauma. It's not lost though, I simply don't trust enough to paint. I'm vulnerable when I paint. I'm the most exposed when I paint. Even if no one sees the work there's still great vulnerability because I have to deal with all the emotions brought on by art. Color, curves, certain images like the sun and stars bring up strong emotion. Right now I don't trust what emotions might come up during a painting session and if I can handle it without losing my mind, literally losing it. I'm hanging on by a thread sometimes so asking myself to let go and paint is asking a lot. The art has to be inside, I'm just afraid to touch it.

Where does this leave me? What do I do about my little shop, about creating to sooth myself? We discussed doll making and how I can create dolls without the emotional strain I feel when painting. Why? Lack of bright, emotional colors, a controlled surface and because I know what to expect with the dolls. No surprises. From beginning to end, unlike a painting, the doll has been planned and has significantly fewer risks. I enjoy doll making and will focus on that aspect of my creative flow with the goal of increasing skill, increasing business and self confidence. I can work at this goal and use the building blocks I had before the hospitalization, before things fell apart. I'll use those fallen bricks to mend my walls as I move forward and through this stage in life.

Faith

4

"Take your stump and lay down." It was said so cold and cruelly by my CNA. Somehow she thought it was funny. I didn't. The words seared my heart, blocking a way to forgiveness.

There were a multitude of offenses like that which lead up to today's firing. She had been here several months but in that time she managed to offend me deeply and break rules that everyone knows shouldn't be broken.

I had to tell my CNA that she can't drive me while high on Marijuana. I have nothing against pot, but driving under the influence of anything is dangerous. Monday I had an appointment to see my therapist in his office. I made it but I found out she was high. She admitted it!

In addition to driving high, she was constantly calling me stupid. She said she was joking but she constantly said, "Shut up stupid." Hurtful crap! So today I made the decision that enough is enough. You can't sit with headphones and ignore me. You can't come to work high. You can't laugh at how I walk or call me "daddy" like you asked. She is so inappropriate. No kind of manners whatsoever!

Today she showed up with McDonald's breakfast and ate it at my table (on the clock) BEFORE getting up to make my breakfast. She had me wait until she was finished. Really? Basically she was angry because I stopped providing breakfast and lunch. I stopped because if she can't respect me I'm sure not going out on a limb for her.

Feeding her was my fault. I eat better if someone eats with me so I fed her if she didn't bring her own food. Well she stopped bringing her own food so next thing you know, I'm providing two meals. Well, I cut her off. No food. No more homemade wine. Right now I've got so little food until the 3rd that I seriously considered asking a friend for a little assistance! Pathetic! Pathetic!! The cat has everything he needs. He's good to go. I'm struggling at my own fault.

My CICOA person will call tomorrow to set me up with a new company. I don't expect much but I have learned a thing or two from this experience. Give an inch and they'll take a mile.

My Oncologist /Hematologist is such a positive doctor. Today he again told me I'm a walking miracle and that I should not worry about the future. He said to keep taking the medications, keep my appointments and move forward. He said if it happens again we'll deal with it. He explained what the doctors would do to try to save the leg and again impressed upon me the importance of taking meds every single, solitary day without fail. I assured him that I don't miss, ever! I understand the importance of it and understand what he went through to get my insurance to pay for it. I'm 100% compliant.

I was very encouraged after seeing him.

My Oncologist is a positive spirit whereas the Surgeon is very kind hearted yet a realist with a blunt side. It's obvious he cares, he was there for me during my whole hospitalization, day in, day out. But he's a realist and sometimes gives medical news with a very clinical tone, forgetting I have to live with that news. Anyway, they work great together and complement one another nicely. I'm happy to have them on my care team

In lighter news. I may need to give up Swiss coffee. Omg. A friend of mine gave me some Swiss coffee in the morning and the caffeine content was so high that I didn't sleep that night. Wow! The coffee was excellent but I was so wired it wasn't even funny. Switzerland, what did you do to that coffee?

Jordan

1

It's still a bit difficult to reach out, but I did with a friend this evening. I told her what the surgeon's prognosis is. I decided to risk and tell her that for an hour or so each morning I struggle with the feeling that it was pointless to wake up. It takes a good self talk to get up and live.

In addition to talking to myself about living, I'm trying my best to complete a few dolls that my neighbor ordered. When I went to look for my patterns I discovered they had all been thrown away back when the whole hospitalization happened. I was rather upset to lose them but I have to remember that anything that was lost to the trash is replaceable. Today I ordered new patterns. Lord knows I couldn't afford it but I went ahead and did it so I can get back to making dolls and bag holders. I don't want to put off doll making any longer.

I was able to go to the Kingdom Hall tonight. Boy was it helpful to worship in person and to see everyone. It was really good.

Here is a picture of Joey taking over my favorite blanket. Lol. Joe is very different from my old kitty Mary Jane.

Best blanket ever

I have to remember not to measure him by other pets. I just need to let his light shine without conditions. He's a good boy. He doesn't eat my plants or destroy anything. He doesn't bother me when I sleep and he uses the box without exception. He's quiet, loving, friendly and eats whatever you put in front of him. He really is a good boy. I just adore him.

Draw something mom.

It's time to sip ginger wine and go to sleep next to my furry buddy. ❤️

Faith

All "what if" roads lead to nowhere. 

I decided to draw a little line drawing with my funky triple lead colored pencils to depict all those "what if" roads I've been going down. It's not a great photo but the idea is there. It's a drawing of roads going everywhere, fast.

What if I die in my sleep? What if I only get a few months more? What if the doctor is wrong and they somehow save me again? What if I live with this and Lupus for a really long time? What if I defy the odds, again? What if I don't? 

All what if roads lead to nowhere. I figure when I start obsessing again that I'll pull out the paints or pencils and do a "what if" line drawing. This is my second. It's helpful to put it on paper and get it out of my head. 

Jordan 

4

The problem with being told I'm strong is that it seems to give onlookers permission to let me be, do little, and go on as usual. I hate being told I'm strong because of all the hidden messages with it.

My doctor and I had conversation where I was asked if I really wanted to know about the true nature of this illness. She said, is it better to know than not to know? She said that at least knowing, I can be prepared. She said I'm taking it well and that I'm a strong woman. I'm strong when I can be but when strength is gone I require what everyone else requires, a friend. But if people have the idea that I'm strong at all, I'll get left. People will forget me or maybe they'll push me to the background and go on with life as usual denying that I'm falling apart because it's easier for their pain. It feels so negative. Alone. Labeled strong for the self preservation of others.' Yeah this is bad but she can do it, she can take it.' I hate being called strong.

Today I was neither strong nor weak. I just managed through some severe fatigue and a few flashbacks from the hospitalization. My CNA was here when I was lying down and the flashbacks started. I turned over and dropped a few tears because the thought of doing that ever again is heavy. It took two or three minutes of silent tears and I was able to gather myself. I cry so quietly that unless you're right beside me you may not realize it at all. The CNA didn't know a thing which is exactly the way I wanted it.

As the doctor said, knowing means I can be prepared. I can, and so can the doctors. They know what to look for. They know the signs and how bad it can quickly get. (My heart is so heavy.) So yes, it's better to know what medications, what procedures, what surgeons and what hospital should be involved. We know who will speak for me if I can't speak for myself. Most of all we know this mixed up, emotional, half broken, headstrong woman wishes to live.

Jordan

1

A friend of mine came over and brought fried chicken and a bouquet of sunflowers. It was too sweet. We sat and talked while I ate. I was hesitant to talk about health stuff because I didn't want to depress her. It was a very nice visit though.

Yesterday after I blogged, I went ahead and took a nap then put on an encouraging 3 part movie. I watched 2 parts of it. My goal is to find something encouraging to do when I get medical news that's upsetting. I have to accept what comes but I can also influence my attitude by feeding my head positive things; reading, movies, art and whatever else gives me encouragement. I think it'll help, so will visitors.

I hope my friends will understand how fragile I feel. My strength is flimsy but I'm working hard to keep it. However, I feel like it would take very little to move from appearing fine to showing that I'm not ok. I feel all over the place.

I have confidence in my Vascular Surgeon and my Hematologist / Oncologist. I have confidence that my therapist will be available to me just as he was when I was in the hospital. I am sure my friends, as helpless as they feel, will be just as helpful as they have been. A text, an email, a hug, it counts when nothing else can be done. It means a lot to me. I'm not doing this alone, not by a long shot. It makes it easier, ya know?

I have a beautiful boutique of sunflowers close to my bed. They're lovely. So despite my worries, despite feeling all over the place, I can add sunflowers to my list of things that made me smile today.

Jordan

1

I saw the surgeon today. He didn't smile much at first. I always try to read him when I go in. I asked if he had bad news. I said, am I going to have to do that fight again, another excruciating, painful time? He said yes. I said, you could have given that news a little easier don't you think? He laughed. I said, do you say this with certainty? He said, yes, but your veins and blood aren't doing it right now.

Phlegmasia cerulea dolens. You vicious, evil demon.

I talked to him about the pain and he suggested cbd oil. I said, I'm ahead of you on that one. He said bc of how I clot, it's not a good idea to give me a nerve block or any of those injections. I'd have to stop taking my blood thinner for 2 days each time I needed an injection. He and I agree that I should not risk even two days off the blood thinner. He's sending me to a pain specialist with experience dealing with what I went through. Phlegmasia cerulea dolens in a patient with Lupus. I just shake my head because I have never felt more pain.

It's frightening, but Dr. L said it looks fine right now but his experience says all hell will break lose again. Until it does I have to learn to live without feeling like I have a black cloud over my head, like I'm just hanging around waiting for the other shoe to fall. Part of me wanted to know if I'd have to do it all again because I hoped the answer was no. I wanted him to say the worst was behind me. I hoped I would be a 90 yr old woman causing trouble in the nursing home because some whipersnapper snuck me in some chocolate and wine. What the heck am I supposed to do now? It's only been recent that I stopped thinking each day may be my last. I had a 'why bother' attitude, 'I'm just going to get another blood clot and die anyway.' Only recently have I stopped living like that.

What he said today is sobering but not 100% a death sentence. It feels like it because I barely survived my body the first time. I guess the plan is to keep making emotional progress, keep moving forward until whenever. I'll find a way to thrive and do so with my new furry boy, Joey.

Today I had myself a nice cry on the bed. He snuggled up to me then slept on my hip. He's beside me right now. I just love this guy.

Dr. L suggested I try cbd gel for my feet instead of the regular oil. I'll try to get it some next month.

Thank goodness for insurance. I may be upset about my out of pocket expenses but shoot, I take $17,000 a month in prescribed medication. I would be in serious trouble if I weren't well covered. My insurance pays for my nurse and CNA, too.

I believe chocolate should be covered by insurance.

Jordan

I went to the store today to purchase cat food for Joseph when I decided to stop by the shoe section to see if I could find something I like. It was suggested by friends and my nurse that I try buying 2 different sizes, one for the full foot, one size for the amputated side. I thought I'd look today.

I rolled up to the shoes and saw a dark pastel pink pair of sneakers that really caught my eye. As I looked for two sizes I thought, ya know, I wear Converse for a reason. I can't wear these "other" things. It's just not me. Yes, other shoes are cute too but Converse are my mark. So I'm going to stick with them except for when I wear a skirt.

I had no choice but to have the foot amputated, but I do have a choice to continue to wear the shoes that I walk in that make me feel good. More on that in a second.

As a woman, shoes matter. I got rid of my birkenstocks bc of the amputation. I can hardly walk so you know pumps are out. No shoes w the back out, no slip ons. My shoe choices are quite limited right now. As a woman who loves shoes, this hurts. So when I put on the Converse, I put on something I really like that I didn't lose to the amputation.

House slippers are out. Clogs, gone. One needs toes for flip flops. Converse are one of the things I like that I didn't lose so continuing to wear them is a security for me.

I'm not sure I'm ready for the step of buying 2 different size shoes nor am I emotionally ready to venture past high top Converse. I thought I was but I'm not sure. So instead of coming home with shoes, I purchased purple fuzzy socks that match my purple fuzzy robe. I so wanted big, stuffed house shoes to match that robe but I can live with fuzzy socks. Since they were on sale I got the pink ones, too. 😁 Lovin' my fuzzies.

I don't like wearing only Converse all the time, every day without exception. I long for birkenstocks and a broomstick skirt while rocking dreadlocks w homemade beads. That makes me smile. Those shoes are a thing of the past but maybe this new Podiatrist really will make me a pair of shoes I can wear with a skirt. Then I'd wear the Converse for everything else without grumbling. I like them, as I said. I'm happy I can still wear them when most shoes I can't. But skirts are a part of me, too and I'd really like to wear them without Converse.

The foot has healed 100% from the infection but of course that's not the end of the story. I've been a bit quiet about it bc it makes no sense to me to keep blogging about this&that foot crisis. It's being managed and it will hopefully not become a huge ordeal.

Last but not least, Joe the cat is awesome! He rocks. He's quiet, loving and doesn't know a stranger. He's just like me in that he doesn't like a lot of noise, but if I turn on a video he's right here on my chest watching it with me. It's too sweet. I'm so happy he's here.

Look at those big, green eyes screaming 'Love me. Love me.' Well I surely will.

Jordan

3

He's a chatter box kitty but as sweet as can be. He sleeps on my chest and purrs. He gives me little cat kisses. This is my new buddy Joey.

Joey is a tabby male, neutered and 9 yrs old. He's calm and friendly to visitors. He doesn't know a stranger. He's got big, bright green eyes and a strong purr box. I just love him, and so does my CNA.

Originally I told the owner I didn't want to adopt Joe, but I reconsider. I'm so, so happy I did.

Three doctors suggested I adopt. I didn't want to because of guilt associated with having to give up Clyde to my friend. Clyde, by the way, is very happy and having a gay old time! He's very happy, buy I grieve losing him. I feel bad that I had to give him up, like a terrible person. I'll have to work on the reality of the matter. I can't take care of Clyde. I physically can't take care of him. But does that condemn me to never adopting again? I had to! I had to get a new fur baby.

I'm not going to try to convince people of anything other than the need for fur in my life and that I think this senior cat is just what I need.

I like his speed. The boy is chill. I like that he seeks out affection and that when I get up to leave the room, he follows. He's been here a week and I'm totally in love with this boy.

Joey has zero interest in cat weed. That's sad because watching cats on cat nip is hi-larious. He does like balls with bells. And what cat can resist a woman's hair ties? He loves 'em.

My hope is that M. Joseph Austin will help with the depression and ease some of the emotional pain that has kept me boxed.

He came with the name Joey. I added Michael and my last name so that his initials are MJ just like the kitty I has for 12 yrs before she passed. Boy do I miss Mary Jane, aka MJ.

One thing about Joe is that he is declawed. Whomever declawed him removed the first digit which means like me, he's missing toes.

Faith

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