I paid a heavy price in pain for a little bit of freedom from my wheelchair. I decided to walk about 100 feet up a ramp to my apartment. I needed to stand up at my normal 5 foot 3, and see the world from the angle I was accustom to.
The problem with walking outside is that I can’t feel the ground under me. With shoes on, I can’t feel the ground. It takes a lot of concentration. But today I needed freedom. I swear I feel like a caged animal willing to pay a high price to have someone open my cage and let me out.
The price I paid for about 100 feet is extreme pain in both hips. Both hips have avascular necrosis. I’m having terrible spasms. All of this just to stand up and walk for a little bit.
Was it worth the cost? Yes, for a few moments, walking in the sun, yeah it was worth this.
I’m in bed right now willing a slice of pizza hut over here. Lol It’s in the kitchen. Lol. But I’m writhing in pain. My legs hurt so badly, they’re squirming all over the bed down there. The pain is from the ankle up to the knee then both hips. I really want that pizza though lol.
My little walk reminds me very much of my little painting called Up Hill Battle. I guess sometimes the hill seems small to others but that doesn’t mean it’s not a battle for the person trying to climb it. We never know how much baggage a person is carrying, mental or physical pain. Even the slightest incline can be a struggle when the person walking is carrying a heavy load.
The miniature is complete. I gave it a nice seal yesterday. My intent is to have it in my shop this evening. If you don’t have an Etsy shop but there’s interest, you can send me an email. I accept PayPal. All contact info is on the sidebar.
I’ve been craving pizza for days. I really want that pizza in the kitchen but the price is a little high for me to get up and get it. I’ll use patience. I’ll rest then have pizza later.
It was still a nice day. I love outing day 🙂 Please let this CNA stay. I adore her.
It’s sobering to think that no matter what we do or don’t do, bad things happen, sometimes in rapid succession.
There’s an historic example of a man who lost loved ones, employees, finances and his health in no time flat. When I think about his life before disasters struck, I can see he did everything right, then blam! When reading that account there’s something I noticed, something I missed about it 5 years ago. He asked a lot of questions to help him understand his situation.
This poor guy got a lot of flack from people who should have supported him but didn’t. True help came from an unexpected sourse. But what gives me pause is how the gentleman handled himself during the entire nightmare. He listened more than he spoke. That’s significant for me right now.
I have so much going on with my health that I wonder how much one body and one mind is supposed to take? I’m not alone in piling up devastations.
I’m shocked and horrified by what my friend from the hospital in 2018 has gone through. It’s not bad enough she has Lupus, was on life support, had a stroke, had to relearn everything from being paralyzed to the point she was only able to move her pinky finger. Do you know the fight it takes to come back from that?
She spent significant time in a nursing home which is where we met. After she left and hoped to move forward, she had cancer and needed a double mastectomy! All without the support of her parents, for whom she openly grieves. Really?! Can our girl please have a break, too?
I think I understand even better why it’s best to take life one day at a time. I make arrangements then do day to day battle towards the fulfillment of the arrangements / goals. A day at a time is hard enough. I’m not about to double up on troubles.
As it stands, I’m going to need 2 hip replacements due to avascular-necrosis (AVN), the left is first. I can hardly sleep bc the pain has been high. Sitting can be difficult.
I’m discouraged if not fearful. I don’t want to have a knee jerk reaction to anything but I do want to prepare. I’m so grateful for having a good CNA. Please let her stay!
I’m working to downsize my responsibilities. In addition to selling 5 of my largest plants, I’m going to need to downsize pets before a yet to be scheduled total hip replacement on the left followed by an eventual total hip replacement on the right.
I’m going to rehome my two Madagascar Tomato Frogs as one complete unit. They come with their bioactive terrarium. I placed them on Marketplace and listed the various plant types, hard wood, hides, lights, screen and locks. These were purchased from Josh’s Frogs as early juveniles. They remain healthy at age two.
I hate to see the Tomato Frogs go. There’s no way on earth the 100g White’s Tree Frog terrarium is going anywhere. Don’t even ask lol The only pets being offered are the Tomato Frogs. Everyone else is staying. We already know Joe Schmoe’s place is secure.
Emotionally I feel hopeful about this. I fear having hope that maybe…. maybe with new hips I might walk again. I’m afraid to put my energy into what seems impossible.
As I was writing this, it occurred to me, I shouldn’t feel stupid just because something I hoped for didn’t turn out. For some reason I thought, if I openly hope to walk again but it doesn’t happen, I may feel foolish. And I will have made others hope without pay off for their support. This is wrong. Who wouldn’t hope to walk again? Who? And what friend witholds support because their personal pay off isn’t high enough?
I fear disappointing people. If I don’t walk will I have wasted their time? l honestly feel ashamed that I’m getting ready to put my friends through yet another ordeal. The hip replacement isn’t the ordeal, it’s my blood disorder related to Lupus that has me so worried.
My hope is to listen to the support of my friends without countering it with fear of disappointing them.
I intend to speak less and hear more. I don’t mean silence. I mean that my personal expressions and opinions don’t have to be shared in full, at all times. In my private life, I need to allow others to express themselves more.
There’s a time to speak and a time to listen. If I’m talking to a friend, I’ll hear more and speak less. In a group of people I don’t know well, listen more, speak less. Perhaps by not dominating the conversation I’ll hear the tid bit I need that changes the day from burdensome to manageable.
What an exciting few weeks. I went from mourning my old CNA to getting a new one with whom I am very well matched. Having her means I can let her do some things and leave other things to me. I can keep up with my letter writing and other forms of reaching out to people. And I can keep up with my artwork.
My goal was to re-open my Etsy shop but I’m not ready for that. I can paint and sew but right now I need to wait a little while longer. I’m ready to do the art, I’m not ready for the stress of opening up the shop and getting stuff out on time. The goal is to do so but at this time there is no tentative date.
I’m pleased that rumination has decreased, which makes thinking much easier. The depression is better under control, and my physical health is holding steady. Concentration is crap. It’s awful but at least I’m completing things even as I bounce from project to project. I have zero concentration any more.
Anxiety is wicked. I’ve changed up how I do my Delta-8 so that it will help with anxiety more and kick in sooner. Sadly there isn’t any guidance on this. It’s trial and error, but at least it’s still federally legal and the cost is still within my means.
THC brownie bites
I baked refrigerator dough cookies and brownies. I cut them into dose sizes then dripped liquid THC over the top of the goodies. Works like a charm. It can be done with THC butter, too.
THC cookie bites
My metabolism is deathly slow which is why it takes 2 hrs for a bite size edible to kick in. It lasts up to 5 hours though.
Pain is not my friend. Anxiety isn’t either, but the depression and physical pain is significantly less, which has raised my quality of life. I’m still a bit reactive but not even close to how I was. Eating is a chore but that is getting better, too.
Wow. Food prices! No matter how much food costs increase, my budget for food has not. It’s been stuck at $200 a month for a while now with no sign of change any time soon. I’m blown away by food prices. I’ve been trying to see where I can clip pennies but I’m not sure where anymore. Perhaps it’s not totally a bad thing that I have zero appetite. Amazon Fresh is so high right now that it’s straight up robbery!
Menopause – well, I haven’t gone to jail yet. A terrible hot flash at least once an hour. Decreased ability to handle stress. I click on people! An Amazon employee had me so frustrated that I asked to speak with someone else. She said, who? “I said, I don’t care, anyone but you.” I really wish I didn’t say that to her.
So, things are progressing in a manner I couldn’t see 6 months ago. I want to remember that even in the worst circumstances, everything changes. And since I am involved and invested in life, chances for positive change is strong.
I’m happy I lived long enough to truly believe and trust that things change. Youth doesn’t provide enough life experience to fully grasp that things change for the better and you can move past what feels impossible. I wish my brother could have understood that.
I’m in my feelings today. I feel very limited, if not left behind. I’m mad at wheelchair life right now.
I truly enjoyed being at the park with friends for a bonfire back in October. That was so healing. Right now though, I long to wander, to hike trails and sit under a tree with my dog. I miss that today.
I hope to get an electric wheelchair soon which would let me get to the front of the building, down a very long ramp then finally on the sidewalk. The sidewalk stops at the property line. No sidewalks. That’s a problem. We’ve lost 2 residents in 5 years bc they rolled in the street. I’m not doing that. There’s simply no where to go off property that’s wheelchair accessible.
I can’t tell you the longing I have to go outside my window and get to those beautiful rocks. I was told that our screens raise up. I don’t have to take it out then struggle to get it back in. I’ll have care again soon so I might test that.
The best way to manage my aching heart here is to do something for others. I feel like a trapped animal right now. Well, let me get outside this trap by reaching out.
Sitting in the grass keeping my problems in perspective
I’m so happy to say that my pen pal list has maxed out. It’s full. I actually have 20 letters that go exclusively to the elderly in nursing homes. They write back 🙂 Also, all the spots for plant homecare / babysitting are full.
I just added a monstera deliciosa from a wonderful person who needs nursing home care due to dementia. These’s a spider plant, monstera, rex begonia and an African violet that I’m looking after. Most are of memory care patients but one is from a person who takes care of her grandfather who has dementia.
It feels good to help with their favorite plants that they’ve taken care of for a long time. It’s something I can give to my friends who have been so giving to me.
There’s a plant that belonged to three generations of very lovely people. I’m so honored! Being able to take the plant torch is an amazing feeling.
I know how it feels to be so broken that it felt as if I’d die where I lay. But it’s true, if you hang on for one more day the urge to act in a permanent way will not be as strong.
When I couldn’t pick myself up, even after the wait, I reached out and my friends reached back. I’m grateful for that.
I sat down to hand sew dolls but my hands cramped and spasmed terribly. I thought I’d try to see if I could use my sewing machine despite half a foot amputated and despite significant nerve damage. I had my CNA bring it to the table but I didn’t try anything until after she left because I didn’t want to embarrass myself if I couldn’t properly feel and safely control the pedal.
There was all kinds of anxiety because I worried I’d press the pedal at the wrong time and sew my hand or something. Anxiety was high but so was my drive to find out if I could do it and save myself some pain while making dolls.
When I turned it on I acclimated myself to how the pedal felt under my foot. I got my brain to recognize the new sensation without automatically recoiling. After a few minutes I pushed the pedal with the machine turned off. I got used to that and got brave enough to turn it on.
I’m so happy I tried. I’ve used the machine several times now and what I discovered is that the nerve damage affects sewing ability. Sometimes the stump hurts too much to add any pressure at all or I can’t feel or control the stump enough to press the pedal. Those issues prevent me from regularly using the machine, but when I can I will use it to my advantage.
It’s been a week since I’ve used the sewing machine but when I was able I sewed the hands and legs for six dolls.
My hands want to give me trouble and my feet are a mess but between the two I am able to offer up dolls I’m proud of. They’re now about 25% sewn by machine but 100% homemade. I still hand paint the flesh tone, put it all together by hand and hand stitch in the hair. I still hand draw and hand paint the faces. The only thing that has changed is using the machine to create the arms and legs. Later down the road I may use the machine to help make the doll’s dress. We’ll have to see where my confidence leads me.
As mentioned in my last entry, I’ve started making bears again. I’m not using the machine with these which means it’s taking longer to finish them. I will post my finished products as soon as possible.
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.ÂÂ
I’m new. I’ve changed physically and emotionally. My eyes haven’t stopped watering since the amputation. They water nearly non-stop.ÂÂ
I feel like I’m complaining but all I’m trying to say is that laying down new roots at 47 is difficult.
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.ÂÂ
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.ÂÂ
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.ÂÂ
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.ÂÂ
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.ÂÂ
Both works were created after the amputation and are in watercolor and ink.ÂÂ
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.ÂÂ
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.ÂÂ
Fifteen days total but halfway through I began to lose myself to the constant and extreme pain. My medication cocktail sometimes caused me to see dragons and aliens. I’d been in intensive care for the bilateral pulmonary embolism and life threatening blood clots. I was about to begin a chapter of life I’ll never forget, one that has left physical scars and emotional pain. What I’ve decided to do is express some of those experiences through art.
The first experience in multi media is called Three Birds.
Half way through ICU care I was losing it. The doctors worried I’d have to go on dialysis. My kidneys were shutting down, my heart was in trouble too. I was in trouble and I knew it so I asked my God, “Are you with me?” I needed to know if He knew his servant needed his comfort and approval.Continue reading “Three Birds”
The last few days have been torture. I hurt from the top of my head to the soles of my feet. The amputation site is having an electric storm of shock and neuropathy. It’s been a bad few days and I’ve done very little reaching out. I’ve just been waiting for medication time!
The foot that was amputated coincidentally was the foot with Chronic Reflex Sympathetic Dystrophy. Though amputated for other reasons, I hoped the RSD fire and pain would stop, it didn’t and won’t. It doesn’t work that way. Continue reading “Enduring the Days”
