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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!

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

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

7

uprooted sundrip

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. 

I'm new. I've changed physically and emotionally. My eyes haven't stopped watering since the amputation. They water nearly non-stop. 

I feel like I'm complaining but all I'm trying to say is that laying down new roots at 47 is difficult.

Outlook sundrip

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. 

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. 

Jordan

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