Skip to content

1

Well, I saw the Podiatrist today. He said things will patch up nicely. I wondered what that meant, then he pulled out a razor and tweezers and started to cut open the wound. He squeezed a bit, muttered a few things and said, looks like the infection has healed, you're just left with the wound. He squeezed the wound some more and tweezed, sliced and cleaned. He had the nurse photograph it, pack it and dress it. He sent me home with a cream and said to come back next week. I call that good news.

In other good news, my current CNA quit. She turned in her 2 weeks notice today.

I wish I could say that my CNA took me to the doctor like she should have, but she wasn't able to because it rained today and her windshield wiper motor is out. Ms CNA told me she had no plans to fix it until July 8th and that she would not be able to take me to the store, to see Dr D or any other doctor if it rained. So, a friend of mine took me to the doctor today and the CNA lost a day of work. She was not happy! Oh she was not happy at all!! It was not my intention to anger her by calling off, I just needed a sure ride to the Podiatrist. I can't count on her at all. So now she's quit and I will get another CNA. Let us hope... pray... it'll work out, even for a time.

Faith

I collect tea and porcelain dolls. My body collects illnesses.

This is my second round of meds for the infection in my feet. At the beginning of the second round I had a side effect from the medication that caused a rash from my neck to my stomach, front and and back, arms and shoulders. I'm all jacked up with a yeasty rash!

I can only shake my head! I mean really? Can a girl catch a break, please? In the meantime, the infection is steadily growing in size on the left foot.

I could easily get depressed over all this but I'm trying to keep encouraged and keep on going. Taking care of myself and spoiling myself helps me endure things like this.

One of the things that should be helpful during this time is my CNA. For months things were good but right now they are coming to a rapid conclusion. There's trouble in CNA paradise. She and I had a long, long, pointed talk but I'm not sure anything got through. I see this ending soon. The problem is attendance and entitlement. She also lets me know just how expendable I am, which feeds into my abandonment issues. I told her that, but she wasn't able to hear it.

I know my plate is full right now but I have hope that things will soon calm down in a wave of relief.

Tonight I'm having BBQ ribs made in my slow cooker, a small salad and a baked potato. For dessert I'm having tea and carrot cake. I'll end the night by doing a soothing and healing wash in Tea Tree oil, Oregano essential oil and a dab of Lavender essential oil. This will help my chest and back situation. I then have a nice book to cap off my evening.

Faith

4

I've been going in to see the doctor more than normal because my body is having a hard time fighting the infection. The days I've not gone in she's called. I'm also to keep a photo diary of the changes to the wound site, which I've been doing. The infected area changes in size almost daily. It is amazing to see, amazing in a frightening way.

Today the doctor said the test results show I do not have MRSA. She originally feared it, but that is not the bacterial infection we're dealing with. She said it's necessary for me to go to see a specialist who will do x-rays to look at the foot, and a doppler to look for blood clots.

I was nervous about this appointment. I keep expecting the doctor to say there's nothing more that can be done for me. I fear more pain than anything else. Pain of the infection, pain and weakness in my legs, pain of another amputation. Pain. I fear it.

I never, ever want to come close to where I was in the hospital when the pain was so bad I prayed to die! I believe that happened 3 times. Even when I didn't pray to die, when I wanted badly to pull through, I feared I'd lose my mind because of the pain. Pain felt like it broke me. It left a crack in my head and on my heart.

I see in my head the way my body swelled with 70 pounds of excruciating, excess water weight. I see in my head and remember vividly black feet that once held the most painful, huge boils. It was horrendous! I fear ever having to do anything like that again. I fear I will.

The right foot is the biggest issue. The doctor said the meds aren't working but she wants me to try another round. So, more vomiting, more insomnia, ears ringing and other super fun stuff. The specialist will most likely change treatment but for now I do round two of the same.

I see the specialist Wednesday.

I'm discouraged and fearful but still determined to keep going.

It's 4pm, my CNA is gone for the day but we put dinner in the crock pot for me. I'm having roast with potatoes, carrots and green beans. There's a nice cup of tea in my future.

Faith

Three times last week I saw the doctor about my right foot because of the infection. She took a small biopsy to see exactly what type of infection is giving me the blues. I should know Wednesday when I return to her office.

I'm still handling it ok emotionally, I think.

I hate, hate, hate the medications I'm taking right now. They make me vomit, cause panic attacks and insomnia. I hate this crap but I know it's necessary. Last night I tossed and turned until finally I abandoned all aromatherapy and natural healing for a nice, green Clonapin. That helped some but not enough to keep me asleep.

Despite the feet being infected, especially the right one, I've had some really nice things happen this week. Here's my gratitude list :

  1. I was quite shocked and very grateful to receive 3 new, blue blankets in the mail. 🤗 I was so surprised and overjoyed. How awesome. I'm spoiled rotten. LOL. One of the blankets is a weighted blanket! Omgoodness I love it! Total score!
  2. I got a beautiful, large book on butterflies of the world.
  3. Using German Chamomile and Marjoram essential oils on my feet helps with Phantom Limb Pain, as does the weighted blanket.
  4. I had homemade strawberry shortcake with my CNA.
  5. I've had a lot of phone calls and visitors this week. I also got a couple notes which I will add to my card box.
  6. I heard, saw and recognized my first Catbird. Very cool bird.

Faith

1

Today I saw the doctor for the second time this week. She said, you seem really calm. I said, I know where this foot ulcer thing could easily go. I'm trying not to panic. I'm trying to do one day at a time without borrowing tomorrow's troubles.

The left foot (amputation site) is aggressively infected with a foot ulcer. Everyday it looks worse despite following orders, taking all medications and keeping up with dressing changes.

Yes it worries me but I can't panic right now. I feel like I did when I was in the hospital and they told me I was going to lose the foot. I told them to do what they needed to do, just return me to my family and friends. I was afraid but determined to live. I was determined, grounded and clear about continuing my battle. That is how I feel right now, determined, grounded and clear in my desire to never give up, come what may. I have Lupus so stuff is going to come! But right now I have a bit of extra gas in my emotional tank which let's me feel strong enough for this, again.

So far I have not lost the leg due to the infection. So far further amputation (from the knee down) has only been discussed to let me know all the factors in my current situation. The goal is obviously to stop this infection and manage my circulation and blood system. I would say that treatment is appropriate right now and that a little time will tell where we go from here.

Since I don't know exactly where we go from here, since nothing is sure, I've chosen not to borrow anxiety and troubles. I've decided that day to day work is best for me. Thinking too far ahead may even compromise my health by adding to the stress my body is already under. When needed, I've let myself cry. It relieves stress and helps things not build up inside.

Last but not least. I'm in need of a blanket. Because I'm not fully continent, I had an accident. It was last Saturday after my nurse's aide left. So I got in the shower on my own then stripped the bed. I was going to try to put on new sheets only to discover all were dirty and that I only own one blanket, which I just stripped off the bed. I would have done the laundry but it's on the second floor and very far from my apartment. I am physically unable to get there and I can't transport laundry in a manual wheelchair. To make matters worse, no nurse's aide was to come until Monday morning which left me wrapped in the flat sheets without a blanket until then.

This will never happen again! I will be getting a blanket when I get paid on the 3rd of June. It's already humiliating to have accidents but to lie on a stripped, cold mattress bc of it is nothing short of insult to injury. I've got a decent amount of sheets, but I'll hit up the Amazon website for a blanket very soon. I've got a nice blue blanket in my near future.

In all the madness, I am still painting and focusing on my goals.

Faith

I'm in a decent mood despite health issues. I'm still struggling with an infected foot that requires wound dressing changes daily. It's kind of ugly at the moment as far as the foot goes. I'm still on antibiotics and steroid cream.

Well, I've been able to paint and do some collage work in my art therapy book. I had this apartment messed up bc I pulled out papers and stuff for a collage. Looks like I'm going to need to start collecting collage materials again. I don't have many materials for it to speak of, so collect I must. It felt so good to let go and let art! I quickly cleaned my studio apartment after I let go, but let go I did. It's the first collage in a year!

I go in to see Dr. D two times a month now which is really helpful bc I feel like there's actually a point to the art therapy. I was just describing it to him over the phone each week then showing it mass when I saw him once a month in his office. Now that I see him every other week I feel like there's a point to doing the assignments. Sooo, there's a lot more art in the book than normal and not just geometric shapes. That's a huge step forward, moving past just geometric shapes in black and white. It feels good to let go.

I knew I was shut up inside. I knew I was closed off and that was why I could only get out shapes. I wasn't trusting the process, or much of anything at all. But, I had some really good break throughs the last few weeks. Those revelations have given me strength and the ability to better endure. I feel as if I got a bit of information that put a little extra gas in a tank that was running on empty. With this propulsion, I've seen an increase in art. I couldn't be more pleased.

While I am still struggling to get my foot healed up right, I am doing much better emotionally. What's interesting is that people tell me my voice sounds stronger, more calm. I feel better inside, that's for sure. With a little emotional healing and a lot of art, I just may be able to see this battle through.

Faith

Dr. D and I discussed the possibility of me painting almost daily at set times. This would allow me to know ahead of time what to expect. I need set times for things as well as lists to feel more control over my environment and situation. Setting a specific time to paint and doing it has helped me to relax more while painting. There are no expectations. No pressure to produce view worthy materials. The goal is to create and to risk. At first I was concerned about wasting paper and paint but truthfully, I have plenty of both so paint I will.

I've learned a few things over the years about size and media for my personal use. If I use paper that is too big then the project is overwhelming and may not be completed. Paper that is 8 x 10 is usually undaunting, however, there are times I'm so closed up that I need 5 x 9. These sizes also mean if I'm confined to the bed I can still paint with relative ease.

I know for a fact that I'm a paper artist. I love paper, especially textured papers. Oh they just do something to me. Pencil, pen, brushes and other tools are musical as they hit different textured paper. I absolutely love it.

I've been asked if I paint on canvas and create larger art but the answer is no, I usually don't. I'm not comfortable with creating larger art. There's been so much discussion on this subject but the bottom line is this: I am an artist who creates smaller works on paper. Staying within these bounds means I stay true to my craft. It allows me to freely paint instead of attempting to become something I'm not. When I allow myself to paint at a size comfortable for me, I am able to express myself and risk creatively.

Be More by Sundrip

"Be More" is a 7 x 10 watercolor and ink piece created in a wire bound Canson notebook. The art therapy piece expresses the need to bring my emotions to a more balanced view.

I see myself in such a negative light and demand a lot of myself. I'd like to lose the idea that there's something fundamentally wrong with me and get closer to the balanced view that I'm just a flawed human being like everyone else.

After creating the piece free style, with no expectations, I looked at it and began to write what it brought up. The first thing that came to mind is that it's disorganized and very raw. This didn't feel negative to say. It seemed to reflect how I've been feeling lately, disorganized and like I'm just flailing about like a fish out of water. I noticed that the two people dominate the picture. They hold hands and share a small red flower. Though both have a missing foot, one has her mouth open and the other is closed.

As I began writing words like disorganized, fearful, disliked, desperation and paranoid, it occurred to me that I should write how I'd like to be and ways that I am at times. The other side of the paper includes words like risk, flexible, fluid, acceptance and giving. Right between the two figures and by their feet is the word 'integrate'. This reflects my desire to be more harmonious with reality. Reality is that I'm not all bad or all good. Things are no so black and white with me.

Be More detail 1

Of all the words that were written, one sticks out the most. It is the only word that appears in all capital letters and that is the word BURDEN. I ...feel...like...a..burden to others! It'll be quite the struggle to get that emotion in check.

It felt really good to complete this art therapy piece. I like free style painting. I like adding converse words/ideas that turn the piece into a learning and mindful experience.

Faith

4

It feels like yesterday but tomorrow it'll have been a year since the amputation. I was ok until it was time to be alone, then I fell apart.

The two people I talked to commented that I've come very far in a year. They said there's been loss but that I've made great strides. In prayer I said that what I needed was someone to grieve this loss with me, validate it, not encourage me to keep going and see the bright side. I said I needed someone to understand my tears and understand how complex it is to lose a part of yourself.

Yes, I've come a very, very long way and beat nearly impossible odds. That can't be disputed. What I have a hard time with is justifying this level of upset over half a foot missing but my grief, as confused about its validity I may be, is in fact strong if not consuming. I told my therapist that watching the foot die for a two month time period is the part I can't seem to get over. Seeing.. remembering how far my body had to be pushed for two months !!! brings tears of anguish to my eyes!! I can't be any clearer when I say that watching a limb die is worse than the amputation itself.

I'm not angry about being in a wheelchair. I knew this was part of my future bc I've been ill for years. But I miss long walks beside my dog outside! I miss my dog.

This is all so new. New pain to get used to, new eye level from a wheelchair and seeing the world, new home, different body...... Is a year long enough to adjust to such things?

Tomorrow will be a long, busy day. The carpet is getting cleaned after the water heater drained all over it. This means my little bed has to be moved as well as a few personal items and plants. It shouldn't take long but it'll be an ordeal. My nurse is coming tomorrow and I will be going to the Kingdom Hall. It's going to be a full day. I didn't plan it that way. There sure won't be much time to wallow in my thoughts, or much time to recharge mentally as I try to transition from one task to the next. Let us hope I have enough energy for all this on a potentially emotionally charged day.

Faith

See On Losing More. http://www.sundrip.com/2018/05/05/on-losing-more/ The entry before the amputation.

I left something behind in the hospital. Under pain and pressure my mind split and broke, but it's much more than that. I've been shaken to the core.

I feel like I should apologize for still talking about the affects of the hospitalization, like I should be over this. Anyway, what Dr. D and I discussed is how the medical events felt like my own natural disaster, my own earthquake. My entire world shook, right down to the core of me. It destroyed things I fear I won't get back. Further discussion brought out more on what part of me feels like it broke and was left behind in the hospital. What part of me was left behind in the hospital? We moved from the natural disaster example to one of home invasion w assault and robbery.

The medical events where sudden. No time to prepare for them. The events saw me lose my home, pets, possessions and part of my body and nearly my life. It's as if a robber came in and stole all of it and gave much physical pain while doing it. And much like a robbery victim, I am feeling a huge loss of security. That is what was left behind in the hospital, the piece of me I fear I won't get back. It is also a huge creative block as I can't seem to risk the way I did before. All I get out anymore is geometric shapes in color or black and white. If I can't risk, how will I ever truly paint again?

I know that I need to move more towards acceptance of my new life. I know that, but I grieve the loss of the old that seemed to be coming along better. I was losing weight! I was walking more, healthy enough to care for a dog. Yes, pain still consumed me but from where I am now, what I see is that the life was mine. It belonged to me and I had a sense of trust and security. The hospitalization changed those two things. While I don't worry daily that I'm going to die bc of a blood clot, I do struggle with it. I go back and forth between feeling super alive and feeling like I have one foot in the grave. It's as if I am running forward making progress, feeling good and I suddenly remember not to trust that feeling. And I'm right back in the hospital bed with the smells and sounds and the horrific pain. I'm back to feeling lost, insecure and shaken.

It'll be a process to get out of this spot and I know it. I just miss so much of what was. People pressure others to live in today, don't look back, accept what you can't change. I'm not there yet. I'm limping toward that goal, but I'm not at acceptance.

I go in to see Dr D next Tuesday. I was to go in Friday but that's not going to work.

We briefly discussed that my new CNA is testing her employer's patience to the limit. She has informed them that she will not return until May 2nd. I shake my head bc it's a bunch of bull why she requested the time. Due to her attendance issues she may get fired by the company. I'm also frustrated with her attendance problems.

Faith

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

%d bloggers like this: