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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

4

I'm home now. What a scare.

My foot is infected again. I went to the hospital and was admitted for 3 days. The wound turned black and scared everyone to death. I was originally diagnosed with a bone infection but the surgeon that amputated my foot as well as his partner disagree with that diagnosis. I had an MRI and saw 5 different doctors. They talked about the need to remove more of the foot but my surgeon, Dr L, does not believe it is needed at this time. Dueling doctors.

In addition to the foot issues I have elevated kidney functions (creatinine levels) and high white cell count. My liver is fine. I have decreased lung functions.

I was given IV antibiotics every 6 hours then every 12 hours, for three days. Now I'm home under the care of my nurse and aide, with oral antibiotics for up to six weeks. This is to avoid having another amputation. If it doesn't work then I will have to have the rest of my foot removed.

While I was in the hospital the full weight of this was on me but I felt like if given time I could muster up whatever is needed to do this yet again. Being admitted on an emergency basis didn't give me enough time to get my head together. Thankfully there was no surgery and I now have time to gather myself for whatever comes next. I can do this. I don't want to but I can.

You know what's coming Sunday? A purple, fuzzy robe! I ordered it yesterday. I'm so happy 😁🌻💜

Tomorrow, after the nurse and CNA leave, some friends are coming over for ice-cream. I can't wait.

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

2

I really needed my doctor to say it's going to be ok, but that's not the update I got today. I'm literally shaking. He used the word surgery. I just closed my eyes. My heart dropped. Here we go! No amputation, just an outpatient surgery to do whatever to the wound site and then close it up so it heals better. It's been 2 months, two long months and it's not healing enough he said.

Last night the pain was as bad as when I was in the hospital, before the amputation. This pain is no joke! For now, I've sworen off walking because it hurts so badly. The Podiatrist made a few suggestions for after the surgery for what he may be able to do to help with the pain. Unfortunately, the procedures can't be done with my foot this way, so I have to wait.

I'm just in shock. This thing took on a life of its own. It started off small and started to double and triple. It got crazy before finally the infection cleared up. But the wound, as long as it's not healing, can get reinfected. Nobody wants that. So a minor surgery happens so that nothing bigger and even more severe will result.

I'm going to allow myself to fall apart and roll around in fear and pity for just a little bit. Then I'm going to put my big girl panties on an fight like nobody's business!

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

I have a hard time believing, after all these years, that I still don't feel clean. It's been so long but I still try to wash off yesterday in the shower. I still need to get all the past off my body where it lays decaying me. After all these years, I just can't fully get over the abuses suffered as a child. As discussed in my session earlier today, spiritual abuse made a bigger impact than once thought.

We also talked about getting a new prosthetic designed for me by a new office. It's to be a lot better than the so-called one I have now.

While at the new Podiatrist's office, I had somewhat of a shocking comment by one of the nurses. She suggested that my surgeon didn't take enough of the foot and that is why I have the ulcer. The doctor said nothing of the sort. It was only her. She said that when they do the surgery they take what my surgeon left behind. I was shocked and disturbed so there wasn't a reply or inquiry, but I will ask when I return the 26th of this month.

Flowered Amputation Art

The art piece includes geometric shapes once created when I was totally closed up and unable to risk or express much through art. The shapes swallow a figure with an amputated foot with a flower in its place. The piece is in watercolor and black ink.

The figure, me, has half of the face with black which is decayed and scarred skin. The scars are black like those on my foot areas from the blisters caused by the blood clots. It feels like people can see my scars even if the scar is emotional. I can cover the physical scars with socks and you can't tell what I went through. But it feels like I wear other scars on my face for the world to see.

Looming flower SUNDRIP

Flowers represent emotion too big and scrambled for words too heavy to manage. When the flower looms over the figure it represents feeling overwhelmed and drowning in anxiety.

I purposely used pink on her shirt instead of red, which is the color I choose for myself in drawings. There's a reclaiming process going on right now of yellow and pink. I hate yellow but love pink, yet I associate them both with an unsafe youth. I'd like to reclaim those colors. The first step or transformation, will be to use them more in art in specific ways.

Purple and yellow butterfly transformation

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

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