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5

I'm going to be in the hospital for a few days. Despite being on blood thinners my body has still created a blood clot behind my knee. There's an abnormality in the left lung but I'm not sure what that means, if anything at all.

When the doctor gave me all the information and options, I burst into tears!

I've been told to be strong. I've been told to have faith and courage and not to give up hope. I've been told I can take this... again... That I may not want to do it again but I can take it, I can manage more. I cried some more then thought, I'll try.

I'll try to tap into that girl inside, the fearless one, the head first, won't quit girl. Right now I'm angry and tired. I just want to go home, my home. I don't want to fight for every breath. I don't want this pain anymore and I want my dang on toes back. But what I need and want are different. I need a jackhammer to get to the part of me that can keep going at this pace and level of pain.

In all honesty, I may fall apart but I don't know how to give up.

The part of me that can keep the pace isn't far away. Perhaps she's letting me get out tears so we have more room for fight.

Faith

Update: The plan is not surgery but to up the dose of my shot a little bit and add an asprin. No surgery! I should only be here a few days. Also, I have the same group of doctors from the big surgery two months ago. They're still following me.
I'm relieved. They feel the clot is small enough that surgery is not needed.

I take life for granted until I go head first into a moment that tangles with sobriety. My eyes are wide open to how fragile people are and how they too live life blinded, until they absolutely have to see.

I've got another blood clot situation. My fear is that it'll threaten the left leg.

The other day I was tucked in bed when it hit me - I miss popcorn. I miss homemade, buttery, kernel corn. I miss fruit drinks on movie night. What I really miss is life as I knew it. I miss the chaotic apartment, the art, the high and driven spirit that set goals, and wanted to live as more than a survivor. The more I let myself think about what I miss, the further away I got from acceptance of this new life and its possibilities.

I'm not emotionally strong enough to look back and think about what I miss. I have to focus forward. I have to work on accepting or letting go according to my abilities. It's hard to focus that much though. It's hard not to panic and scream, IT'S NOT FAIR! I know it's not fair. I absolutely know it but to sit in that right now isn't going to help anything. It won't help me focus on the things that are within my control. I need to focus on options and care plans not each piece of life I miss. If I do that I'll rob myself of much needed energy. I need all my energy because Lord knows I'm tired.

Faith

1

I stood twice then transfered to the toilet on my own. I needed help with getting back in the chair and getting my brief on. I transfered to bed on my own, exhausted, discouraged a bit. But it's early, right? It was only the 7th that I had surgery.

The CNA asked me if I would have to pay full price for a pedicure. We both laughed. ☺ The child is sick. Lol

I felt very "disabled". There I was stranded on the toilet stark naked except for the depends hanging low and left. Obviously I could take the victory in all this but I can see what all it took to wrestle w the hospital gown and lose the battle leaving me butt naked like a toddler on a potty chair. I got it in the right spot, and on time. What am I, two?

Every minute counts because every minute is energy to complete a task. If I miscalculate and overestimate, then I'm screwed. This is where humility comes in. Accept the limitation or pay the consequence.

Today I counted right. Today I can be irritated and I can laugh at myself.

When I realized I'd need help getting back in the chair I laughed at myself because I was stranded on the toilet. Go figure. I knew I could get back in the chair but I couldn't manage the brief, get dressed and wash my hands. So I pulled the "Help Me" call light and waited. I told her what I had energy for and what I needed help with. A few min later I was successfully back in bed.

It's an ordeal, a math lesson, a test of humility. It's a reminder of what can be taken for granted and of the times we have to let go.

Good things that happen this week
First and foremost, thank you for letting me survive the surgery. I was scared.
Thank you for all the friends that showed up.
Thank you for good sleep and times where I was able to cry and release grief.
Thank you for reminders to see the bigger picture, see beyond this moment and know that both now and the future matter.
Thank you for humor with friends and nursing staff. We had a hilarious time tasting guava fruit. It was fresh but not ripe, and very nasty but funny to see the facial expressions because of the tart taste.
Thanks for strong pain medication that keeps most of the really bad pain at bay.

Faith

3

I'm trying not to let it eat me up. I know it'll be difficult and emotionally painful, but I don't want it to rule me.

It's funny, I picture myself dancing again. I picture myself bending down to pick up moss, walking through grass down to the water line. I can see myself functioning w just part of my leg and foot but I don't know if I'll ever get over the loss. I don't think I'll cry everyday for years or anything, but I can't see me "getting over it". I think the pain of this loss will stay but that the depression associated with it will fade into the background. ...continue reading "On losing more"

3

I will photograph myself walking and post the photo bc it's unbelievable when I say that I walked. I did though. I stood up with the walker and took 24 steps. The physical therapist asked how I felt and I said I had no words. I was emotional and speechless.

I wanted several of the PT's to see me walk. I waited for a few to come in the room and even had one called so she could come to the area. Ha! I felt like a kid on a bike who had to show off that she can balance and move forward. It was like I'd taken a passage from helpless kid who falls behind, to an independent teenager looking to feel her roots. Imagine the emotion and confidence I'll have to walk after surgery and when I get prosthetics and shoes. The first time I walk with them l'm sure I'll be speechless.

 

In line with medical goals I continue to take the wheelchair outside for activities such as looking at rocks and finding the perfect spot for a cup of tea.

I found a rock shaped like a heart. I painted a face on one and lettered HOPE on another.

Jordan

6

It's been weeks since I required assistance getting in bed. It was a vulnerable, helpless feeling not being able to move. But now I can use the wheelchair so I have a measure of independence. Even if I'm in bed for the night, I want the wheelchair within my reach. My anxiety level goes really high if it's not bc I go right back to feeling helpless. I feel like a lump in the bed who can't do anything. ...continue reading "The Mighty Chair"

3

Today in physical therapy I stood up on my left leg. I wasn't happy or excited. I was incomplete.

What I want is to put my off brand Converse tennis shoes on BOTH feet, grab my cup of Earl Gray and walk back into the life I had. That is complete, that is what I want.

I also want it to be untrue that it would take 2 years to walk again.

I'm sorry that I'm not all thrilled that I stood up. I do feel appreciative for what was done for me and what is being done. It's not that at all. I'm grateful, but I'm also saddened by the loss. What time has there been to take in just how devastating the last few months have been? I've been counting my blessings because I narrowly lived, because I beat amazing odds. But I have not really digested much else. Now that the dust is settling I feel the weight of loss. That weight is heavy whether I stand on one leg or lay here punching letters on the screen. The loss is substantial, and it hurts.

Faith

Dear Head,

We aren't friends today. Your behavior has divided us, putting a rift and a scar in an already shakey relationship. At this very second I can't tell the world all you've done because my body is attacking me with the strongest sleep spell I've ever felt. This half awake, druling, snoring, head bobbing, heavy eyed fight has been lost. I'm captive with no choice but to surrender. However, when I'm released, I'm going to tell them everything. I'm going to spill my guts and tell the world how you, brain, tried your best to depress, discourage and break me. I'm going to tell them everything as soon as my body releases me.

Lupus fatigue & depression, bites.

8

My wounds aren't pretty. At one time I saw huge boils on my feet and ankles. I saw my feet turn black and the skin slip off. I saw my toes painted with medicine that turned them reddish-brown and intensified the horror. And yet there is beauty in it all. How can there be beauty in blackened toes and top layer skin that has died? Because I'm healing.

I've even photographed from the beginning to now, boils and all, and new skin under the dead where the boils used to be. I have photo proof that my Designer created me to heal. Despite flinching at horror show type wounds, the stuff of Hollywood, I see beauty in my design and agree that I am wonderfully made.

I got a different wheelchair two days ago that is easier to use than the other. I can get myself around so much better. It seems in the chair I have a need for a security blanket over my legs. I have a feeling small afghans and I will have a special relationship from here on out. I feel more hidden, less self-conscious with a small blanket over my legs. ...continue reading "Wonderfully made. It’s complicated."

4

I feel fear more than anything else. I'm afraid of the pain, afraid of vulnerability, helplessness and being left alone for long periods of time. I fear what I can't do such a get up on my own. Every time they put the wheelchair beside the bed and have me sit to get in it, there's a feeling of dread. I dread trying to move legs I can't feel.

I fear falling. I fear angering people who may take advantage of my vulnerable state and hurt me physically.
I do my best not to be ruled by these fears but I certainly feel them. ...continue reading "Fear"

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