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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

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

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!

2

Content : Suicide discussion. Physical updates. Flashbacks of abuse. Abuse.

The nurse will be here tomorrow. I've fallen 3x in a week so things are a bit messy right now.

I've been told I pushed too hard, tried to do too much.

I'll see Dr D tomorrow as well. He is concerned about what he calls hallucinations and what I refer to as body memories. This is the second time he's asked if I'm suicidal and the second time I've told him no. The more suicides I hear about the further away from a possibility it is for me. George Foreman's daughter and 3 survivors of school shootings recently took their lives! It hurts and reminds me of my brother's suicide. How could I make the decision to kill myself, knowing what I now know? Years ago it was an option but not now. Not now.

During flashbacks I smell blood and urine. I can feel her hitting me. I can smell her parfume. My stomach cramps and I vomit.

I'm feeling a bit down right now. A little lonely, too.

I should mention, I like my new CNA a lot. She's on time, works and drinks tea with me in the morning. The funny thing is, there are a few teas that are just for me. I don't share them. I finally got tea in the mail from Uganda. It's awesome and just mine. I have Japanese Orchid tea that is exclusive as well. Most teas I'll readily share but some are saved just for me.

Always serve tea.

Jordan

1

The week has been quite. My regular CNA has been out for a while leaving me with only 2 half days of coverage. It's been difficult to say the least, but it's been quite, no major drama.

Saturday is one of the days I was covered for 3 hrs w a CNA. After taking care of things here we ran to Walmart. Neither one of us thought about going in the afternoon on a Saturday and how busy they'd be! We got there and the motorized carts were all in use. I decided since I'd gotten myself to Walmart I'd try to walk a little bit. So I did. Turns out I walked for 45 minutes!!

After walking my lungs hurt and my feet were tired but I was not in as bad shape as I expected to be, or so I thought. I came home and immediately went to sleep for most of the night. When I got up to go to the restroom, oh my goodness pain!! My feet let me know that I over did it!!! So, most of Sunday has been babying the painful amputation site. My left foot reminded me that it too was traumatized in the hospital and it too was over worked Saturday.

I learned that I can walk in the store but I have to be aware of how long or I'll pay the consequences like I am today. And yet I'm happy I figured out that walking stabily isn't in my distant future but much, much closer.

I know I over did it but I'm proud I took the risk to walk.

Jordan

2

The nurse came by today to check on the foot that I accidentally hacked at while managing it. It looks good, she said. It's healing nicely.

Right now there are no major worries, which is kind of a worry to say. I feel like as soon as I say I'm ok that it's a cue for things to go haywire.

The only issue I have right now is my lungs, fatigue and endurance issues. No blood clots or anything like that. Fatigue goes with the territory but my lung capacity situation does not. She gave me some exercises to do and told me she'd be back in a week.

We're still working on my walking and stamina. I still can't feel much in the legs and feet but pain, and they do not desire to hold me. I concentrate very hard while walking but I tend to forget where one foot is, so it gets shut in stuff or left behind and stumbled over.

I'm trying to get used to the feeling of walking in shoes. What a strange feeling. I look like a dog when you put snow boots on him. The control is loose and wild, like I don't know how to place my foot. I walk much better without shoes.

In CNA news, it's been a quiet and relaxing week with a timely, good worker. I DON'T get to keep her because she has no car insurance and therefore can't take me to the store or to doctor appointments. However, she's on time, works well and does not stress me out.

Ya know, sending me a CNA without car insurance is a problem with these companies. Sending me a great CNA without car insurance is insult to injury after the last fiasco! I wish I could keep her but I require a CNA with legal transportation. The company is well aware she doesn't have insurance and they let her drive other clients around. I don't do it though, so, I lose a great fit again.

Despite several extreme cases with my care givers, there were a number of temporary people like her to come through here with out drama. I've been verbal on the blog concerning the difficulties but not so much about the ones like I had this week. I intend to remind Dr D of the many times I said to him that I had a quiet week with a CNA because I refuse to have it sounds like I can't be happy and satisfied. Yes, the issue of guilt and fault still troubles me, just not to the same degree. So, while I recognize the good CNAs, it is the extreme drama that disrupts and unhinges me.

I'm pleased with my nurse. She is always professional and kind. I hope to have better lung functioning and improvement with endurance when I see her next Friday.

Faith

I didn't get to sleep until 9 this morning bc my pain levels were too high. I tossed and turned and laid here looking at the wall. Finally I slept and woke at 6pm. The entire day is over. I'm not discouraged by this today bc the bigger picture is this - I've got few immediate responsibilities which allows me to have the time to be sick. I'm grateful for the position I'm in that allows life to stop and let me recover. Today is a day of recovery.

Good stuff that happened this week:

I sold 2 dolls and an original art piece.

Warm dinners were made all week here at home. I loved it.

I had pancakes 2 times this week. 😊

Homemade hot chocolate during the cold snap was wonderful.

I've been able to avoid prolonged emotional triggers by processing them and letting them go.

I bought a tiny wheelchair to sit a doll in. A friend of mine is having heart surgery and I can't be there, so I'm sending a representative. Froggie will go for me.

Faith

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