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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

Part of me just wants to curl up in bed and do nothing. I just want to get in a little ball and sleep. There's stuff to be done but I sure don't want to move from this spot.

Tomorrow is therapy. I wish I was going in instead of talking to him on the phone. I'm clinging to him right now.

I keep wanting to reach out to people but I don't. I don't know why. I know better than to isolate. It doesn't help at all.

I know I'm depressed and frightened by the news from the doctor. I'm down because of not being able to get pain meds but one really good thing is that I have cbd oil covered for October. I don't have to worry about that at all. October will certainly be tight, but I'll have all my needs met.

Though I shouldn't stay in bed much longer, it is nice to snuggle with my buddy Joey Schmoey. 😁❤️

I think tomorrow life gets back to normal. My regular CNA has been off sick with the flu for a week. Poor girl. During that time I've had hit and miss care with a period of 2 hours for 3 days. No CNA but for 2 hrs out of 3 days can be rough, but I think she'll be back tomorrow. Let's hope.

I need a shower and a hot cup of tea. The reality is, I'm going to lay here w my warm 7up and fuzzy cat.

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

4

(smh) What do you do with people sometimes? I wonder if she's truly oblivious to the message she's sending or if she's aware and having additude issues.

My CNA is sitting in the chair with her radio on w both earbuds in. She's either watching a movie and making comments about the movie or she's singing to her radio.

I live in a 500 foot studio apartment. We are all but against each other, six hours a day, 6 days a week. If a person tunes the other out w BOTH earbuds that says they don't want to talk. It says they want to be left alone!

So she came in this morning and didn't want to do anything so she asked if instead of making me a breakfast sandwich if she could buy me one instead. (sigh) That sounds ok to some but not to me. Toss two frozen biscuits in the convention oven, heat up some sausage, fry an egg, shut up! Let's not forget that while she's doing it she's clapping her hands and singing to the music on her phone! She can't hear me say anything to her.

Today I told her I'm having a hard time interrupting her music or movie just to ask for something. She said, I'm just over here waiting for you to tell me what to do. She said, I'm not doing anything but watching a movie, you can just interrupt. I said, did you not hear when I said I have a hard time interrupting you? I said, I have to interrupt your phone calls, your movies and your music. Besides, it's considered rude to interrupt.

I object to her music. The language is unacceptable. We aren't going to watch her kind of movies either and I've been part of one too many phone conversations of hers. Who accepts phone calls from PRISON then tries to get you to be part of the conversation? Who does that? So no, I don't want any part of any of it.

I'm so irritated! I've got to be able to talk to her about this when I'm calm. She doesn't see that there's a problem with it.

Lastly, this girl is so loud and animated when she does talk to me that the cat goes and hides in the restroom. (smh)

She shows up every day. She cooks well when she doesn't try to get out of it. She keeps my home looking nice and she gets me to the doctor when I need to go. There are pluses to keeping her. If only we could get a hold of her trying to get away with crap. She knows full well it is totally against company policy to be on the phone at all during work hours, let alone accept calls from prison or watch movies and listen to music with her back turned to me.

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

3

I've been so sick that I've not been eating much. I've wasted a lot of food because I was in too much pain and didn't want eat, and it spoiled. So I made a decision, take the wasted grocery money and buy CBD oil again. I hadn't been able to afford it at $50 for 1000 mg. Anything less than that is a waste of my time, it isn't strong enough. So I did it today, dipped into my $200 a month grocery budget and got the oil that makes a big enough difference that I can stand to even live!

It's been insane trying to get pain relief from the doctor because I have to keep hearing about the opioid crisis! I told the doctor it's not my crisis and I'm in pain. I'm in pain. Legitimate, well documented pain. Doesn't matter. I'm not going to get assistance with this other than CBD oil. I mean, they want to inject me with some crap which doesn't work but they won't give the real help.

I wrote a bit back about how expensive chronic illness is. Today I made one of those decisions that we chronically ill make. Groceries or medicine. It should never come down to this. I know I'm not alone in making such drastic decisions.

I ate two meals today. Two, because the pain level was low enough to allow an appetite.

Faith

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

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