Skip to content

2

I talked to Dr D about this as well as my nurse. Both were quite shocked by it. My current CNA has been showing up for work. She does good work, learns quickly, doesn't burn my food or anything like that. As a matter of fact, she cooks pretty well.

Friday I was sitting at the table eating bacon, pancakes and eggs. As I chomped, the CNA shocked me with, "You can be the daddy. Can I call you daddy?" This is the same CNA that months ago said I look like a lesbian stud. Now she has asked to call me daddy! I reminded her that there is nothing masculine about me and that we are not playing house.

The same day my nurse visited and the CNA up and left the house 3 times while her supervisor nurse was here. She took 2 phone calls while the supervisor nurse was here. I was shocked that she behaved that way. If my supervisor was around I think I'd watch myself, but not her.

The nurse and I discussed her performance. I said that her work is fine but it'll be her mouth that gets her fired! This CNA won't last long. I can't tell you how disturbed I am by what was said. It's not ok to call me anything but Faith.

6

It's nearly 11pm. I'm still up thinking. I feel so desperate and depleted and tattered.

Yes, I'm relieved I don't have to do another surgery and I'm relieved that there's no bone infection, but I'm also exhausted from the fight. Exhausted from keeping my head up as I tread the waters of chronic illness and chronic pain.

The first 12 hours of being in the ER when they thought I had Osteomyelitis, I thought, oh man I don't want to do this. I was so scared but I knew I'd have to get in the zone and muster up strength, but I sure didn't want to. I just wanted to go home and have a regular life. I want the kind of life I assume exists. Most of all, I want to fall asleep effortlessly. No thinking. No flashbacks. No unrelenting pain.

My body is marked with bruises from daily blood thinner injections. I've got small hematomas on my swollen stomach. My feet are scarred up and look like someone dipped them in black ashes. My fingers are numb, my hair is thin and my eyes are weak! My heart is heavy and tired of being sick. Lupus sucks.

I try not to write like this for fear of sounding pitiful, but this too is a very real side of illness. We all fall. I've fallen.

Chronic illness wears a person down emotionally so that all they want to do is sleep and escape. I just want to sleep and escape but night time brings more pain. I swear if I could take my legs off and put them up for the night, that's what I'd do. If it stops the pain then that's what I'd do. After so long it drives me crazy. I just want to scream, "Stop it! Stop it! Stop it! Stop hurting!" Argh!!!

It's going to be a long night, this one. And yeah, I'm going to kick in to coping skills but dang it I'd rather just fall asleep in a way that resembles normality.

I'm not strong tonight but there's always tomorrow.

Faith

2

I smiled every time the doctor or nurse walked in the room. I smiled at the Radiologist, Podiatrist, Hematologist, Wound Team and the vampire, blood sucking Phlebotomist. I'm not an easy stick and hate getting my blood drawn, thus the name calling. Anyway, I smiled at them all, genuinely, because I was greatful for good care.

The partner of my outpatient Podiatrist saw me at the hospital. That doctor did the same as her partner, she did the debridement without numbing the area first. I hate that! I wonder if they've ever felt it? If so, they'd know that it hurts terribly. The other two times it was done by her partner I managed bc I couldn't feel much. This time I cried pretty hard because I felt that razor slice each time. She finally stopped. I was quite relieved. The second time she came I didn't smile at her. I couldn't.

I'm thankful to everyone from the person who cleaned my room to the CNA's who brought warm blankets. I was treated well by doctors, nurses and transportation personnel. The best way to show it was to smile and say thank you.

Thank you to the individuals who knew I was in the hospital and wished me well and offered prayers. You are very much appreciated.

Faith

1

It occurred to me the other day that I expected to be healthier than this and more functional. I don't know why I expected it but I did. It never occurred to me, even while in the hospital under those circumstances, that I'd lay here like *this,* feeling like *this*. What on earth was I thinking, really? Why didn't it dawn on me that it could stay ugly?

I had a lot of questions a year ago. Some of my curiosities were simple. Will I ever cross my legs again? And, will I ever dance again? The answer is yes. I can do both. I wanted to be able to go moss hunting and look for mushrooms and lichens. I looked forward to seeing all the little creatures associated with these types of natural settings. Thankfully, I've gotten to do all of these things again. It's been wonderful regaining these joys. But does it mean I can hope for better health or should I be satisfied with good days and leave it at that?

I struggle to see my life as more than Lupus and chronic illnesses because daily there's a nurse's aide in my home whose presence alone says, "You're sick." The nurse's visit twice a month in my home, plus a bunch of medications all scream, "You're sick." So I struggle to remember just what else I have. This is why my Gratitude Drawing Journal is so important to me. I can list all the thing that make me happy, calm and content. I can draw and paint positive feelings and experiences so I never have far from me just how often my life is good.

Yes, I expected better, more health. I expected to feel better than this but what I don't have in health I do have in loving friends, sustenance and covering, spirituality and joy! You know what? I never expected this. 😊

Faith

I'm struggling a bit to keep anxiety under control. My pain levels are too high and I've not had much sleep.

Today I saw Dr. D at his office. It was a good session yet I dissociated most of the time. It was as if I sat beside myself the entire time talking to him. It wasn't a bad session, I was just very dissociated.

The building he's in is not handicapped accessible. The age of the building falls before the law required all newer buildings to be accessible to all. So I have to walk a long distance to the front door, up stairs and down the hallway to his office which can be difficult for me now. Today it wasn't difficult, it was excruciating. I told Dr. D that the owner will make the building handicapped accessible when he himself needs the access. Until then, he'll hide behind the grandfather law that allows him to operate in a less than user-friendly way. I suppose a person has to experience the loss of mobility to fully appreciate accessibility laws. It's an annoyance to some but a life line for people like me.

After therapy my pain levels were so high that I required Oxycontin so as not to lose my mind! I took the meds and got under the weighted blanket and cried my eyes out. It's been an awful day.

Besides pain there is an increased amount of anxiety that has gone past my usual lavender fix and gone straight to Clonapin. Add to anxiety a nice infection on my chest from the rash I had due to a Bactrim reaction and you've got yourself one very maxed individual. I scratched the rash and it got infected right, dead smack in the middle of my chest. This time I have an antibiotic ointment.

So, I'm struggling a bit, trying to keep my head above water, trying not to be too discouraged. One way I'm staying encouraged is to do some work in my Gratitude Drawing Journal. I'm also going to read older entries in it to remind myself of the good in life.

I'm behind on reading blogs, answering emails and texts but I have managed to return phone calls to local friends who are part of my support system. In an effort not to isolate, I've accepted visits from friends and from the elders at the Kingdom Hall. I'm trying to do all I know to do to help myself through the depression, anxiety and pain I'm experiencing.

I may be exhausted and bruised, but I'm not willing to give up. I don't feel like throwing in the towel, but I do need a little bit of time to do some self care so I can recharge, and emotionally recover, from an hellacious few months. I'll be back to reading blogs, texting and emailing very soon.

Last but not least, I've still got the same CNA, the one that quit. It's a long, drawn out story about why she's still here, but she is. She and I are in what I call the healing process. We are working out our differences and trying to make things stable, productive and peaceful. We'll see how things progress. During this hard time she is being very helpful. The last two weeks have been really good.

Faith

2

For two weeks I'm going to use the 12 pound weighted blanket every evening. I'd like to know if my phantom limb pain is reduced, if general Lupus pain is reduced and if nightmares will be reduced. I feel as if I'm asking for a miracle of the blanket but hey, people say they work wonders.

Honestly, I've already done one week and have a significant decrease in night time phantom limb pain. I've also seen a drastic change in pain levels since I've been using a mix of German Chamomile, Lavender and Marjoram essential oils on both lower limbs. (This mix works well for all nerve pain / neuropathy.) The blanket and the oils are keeping the pain below my personal baseline. So I think I have the answer to my first weighted blanket test question. Yes, it helps with phantom limb pain. My Podiatrist agrees and suggested it's continued use.

In a week I'll know if the decreased pain from Lupus is significant enough to attribute it to use of the blanket.

So far, nothing has relieved nightmares which plague me on and off. Right now they're beating down nightly. I can't break away from my mother humiliating me in some way. I was fighting in my sleep before the blanket. I can say for a fact that fighting has stopped and I don't move around as much, but nightmares are still strong and damaging. There's no blanket for that.

I had to add a small fan beside the bed because the blanket holds my body heat something fierce. Lol. A small fan helps, and I like the noise.

Faith

2

I sure know how to go through CNA's. I suppose this happens often in this field. They've got a lot of turn over. My current CNA put in her 2 weeks notice last week so next week with her is it.

This is the 3rd time in 6 months that she's gotten angry with her supervisor and quit. She calms down in a day or so and cancels her resignation. I told the supervisor that she will try it this time too and she did, but I told her I believe it's time to part ways and that her last day is the day agreed upon by the company, Friday. She is not happy with me right now. She thinks I should give her a 4th chance.

When I told her I won't give her another chance, she went into this long to-do about how I'll probably have trouble getting a good CNA and that they'll cause me problems, and I'll miss doctor appointments. What she doesn't seem to get is that she's guilty of the same and that's why I refuse to allow her to stay. Her attendance, reliability and mouth are big problems now. I'm missing appointments and going through a lot of unnecessary stress.

I talked to the company and told them that I know having this CNA hasn't been all bad. Only recently has it gotten to the point where I feel like the sum of it requires I allow her to quit. It hasn't been horrible for a long time but what I've learned is that you give people a chance and even a second chance to get themselves together. However, a third and fourth chance with no sign of change is ridiculous! You can lead a horse to water, but you can't make it drink!

Sooo, it's time for another new CNA. I'll be praying about it in hopes of getting another few months of good work. That's the goal, it's not set too high either. Just give me a few good months of work. I believe I got 4 from the current CNA.

Things will work out. I'm sure of it. And if they don't, I'll complain about it on the blog. You can be sure of it.

Wound (blood discussion)

I'm relieved that the infection was knocked out by being chocked full of high doses of meds for a month. It still hurts like all get out though because the wound is still there. It's been bleeding quite a bit and hasn't scabbed over at all. One of the good things about seeing blood everyday is that it means the circulation is good enough for regular bleeding. Lack of circulation caused the foot to die and be amputated in the first place. So any sign of circulation, even blood, is seen as a positive sign.

It's going to take a bit for this to heal. I'm amazed at how large of an area was affected and has to heal....... I saw an amputation heal in an amazing way. This, too, will heal.

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

%d bloggers like this: