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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.

2

Fatigue has been my companion for nearly 4 days, including the weekend. I can't seem to wake up for long.

While I still don't have a regular CNA for Saturday's, I do have return visits from CNAs that fit well here. Saturday the CNA arrived at 4pm to 7pm which was perfect for me because I was asleep all day until nearly minutes before she arrived. I slept the whole night and right up to 4pm, I couldn't get up.

When fatigued I barely eat. It's good to have a CNA cook a small meal and nearly force the issue. I had two fried eggs and toast which was the only meal eaten in two days time. CNAs can be helpful in getting basic needs met so I don't go two or three days on a regular basis without eating. The CNAs I have right now look after me very well.

When it comes to fatigue everything is put to the side, even drinking tea. My physical strength is low, eye sight is dim and my memory is affected. It takes a day or so after a battle with fatigue to finally get cognition back to normal, get my body back to baseline and my stomach back to accepting full meals.

I suppose the good thing in all of this is knowing what to expect when I'm fatigued. I know there's nothing major wrong 'just because' I absolutely have to lie down or if I sleep for hours upon hours. There's nothing wrong with my brain. I've not had a stroke, nothing like that. I know what the symptoms are and how to ride it out.

I think it's important to know one's illness and the individual symptoms that come with it. The information can put you at ease.

Now if you'll excuse me, I have a cup of tea waiting, my first of the weekend. Then I'm probably going back to sleep.

Faith

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

After the amputation there has been significantly less CRSD pain. I will not attempt to explain it bc I don't know if it's a combination of the nerves and pain medication making a difference. I simply don't know why there's less CRSD after the amputation, but there is. I could be bc the nerves down there died. I just don't know, but I believe there is a significant difference nearly a year after the surgery.

The last few days there's been Lupus pain and pain associated with nerve damage. There's no burning pain like what happens when CRSD rears its ugly head. The Lupus pain aches deep though. It's relentless. The last three days have been pretty bad for me. I'm not just fatigued I'm weak, foggy in the brain and hurting from head to toe.

As if Lupus isn't enough, there's the anemia that I'm dealing with as well as lack of appetite for the last few days. I forced myself to eat two days ago but I've had nothing but Saltines since. I'm not hungry. I'm just tired, so tired at times that I have to sleep right then and there!

Soooo, those are my complaints for the day. Argh. It's a Lupus life!

These pieces were worked on in the last two weeks. There's been a lot of art lately but hardly any of it has hit the internet. I'm falling behind on it, however, today there are a few to show.

They're all four different from one another. Creating them was quite emotional, especially the last piece when Robert spoke with Dr. D about some difficulties he was having.

The black and white mask is also by Robert. The other two are by Michelle. All are created in watercolor. The last one has crayon as well.

Today in therapy we talked about how difficult it can be to sit here with our CNA day after day and not have her know a thing about our DID. Today two of our snails died just before the CNA arrived which means we had to just swallow it down and not think about it. That's difficult for a kid who just lost her pet. It can be difficult for me, Jordan, to stay out for 6 hours, 6 days a week but so far it's happened. So far we've kept our secret.

Jordan

1

The nurse came out today. I asked her to speak plainly. She said, "You're not going to get better." I burst into tears. It's not like I am unaware, it's just hard to hear. She added that I'll have good and bad days. I still cried. It makes me sad, this new life. I'm still mourning the old. Sometimes I'm ok with this new life but today I'm not.

In therapy we talked about the difficulty of accepting that this body sucks. We talked about what caused the falls as well as feeling pressured to walk. The pressure is mostly, mostly internal. I see people with amputations walking around or elderly people hobbling and feel shame that I'm in a chair. I "should" be up. Then I think, Faith, you can't compare yourself to anyone else! I know I have extensive nerve damage that can't be seen. Lord knows I can feel the pain, but it can't be seen. I just feel so bad about myself right now.

In session, Dr D looked at some of the art by Robert and said it's disturbing and creepy. Robert thanked him. Dr D suggested that he and Robert spend more time together in sessions bc he said he thinks Robert has a lot going on in his head that he needs to get out. The thing is, Robert remembers the sessions not long ago when cursed Dr D out for acting like an idiot about the CNAs. Robert does not trust the man right now. He's certainly not going to sit and confide in him. More time needs to pass between those terrible sessions.

CICOA is coming out Thursday for my review. Wow, what timing. My doctor is requesting that I have Saturday care too, which CICOA and the nursing company will get approved. This means I'll have 6 days a week that a CNA is here. I'll have a different Saturday aide than during the week. This means trying to find a second aide that fits here. A second aide the inside people have to hide from. Let's hope it's not too long b4 they find someone suitable. Maybe it'll only be a few weeks until I heal from the falls, then maybe I can go back to 5 days a week.

Today I'm tearful and sad. I'm also physically tired which makes a difference in my mood.

Dinner was beautiful. I had portobello and goat cheese fettuccine with fresh spinach and tomatoes. It was inspired by a frozen dinner. Tomorrow is homemade deep dish pizza. I still love to cook.

Faith

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