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Category: Lupus

1

Published on 1 Comment on Expectations

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. šŸ˜Š

Faith

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Published on 2 Comments on Foot update: Surgery for wound care

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

Published on Leave a comment on Struggling. Bruised but not broken.

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

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Published on 2 Comments on Feeling Clean. PTSD. Colors.

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

2

Published on 2 Comments on My weighted blanket test

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

Published on 2 Comments on On getting a new caregiver (CNA). Wound.

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

1

Published on 1 Comment on More foot stuff. CNA stuff, too.

Well, I saw the Podiatrist today. He said things will patch up nicely. I wondered what that meant, then he pulled out a razor and tweezers and started to cut open the wound. He squeezed a bit, muttered a few things and said, looks like the infection has healed, you're just left with the wound. He squeezed the wound some more and tweezed, sliced and cleaned. He had the nurse photograph it, pack it and dress it. He sent me home with a cream and said to come back next week. I call that good news.

In other good news, my current CNA quit. She turned in her 2 weeks notice today.

I wish I could say that my CNA took me to the doctor like she should have, but she wasn't able to because it rained today and her windshield wiper motor is out. Ms CNA told me she had no plans to fix it until July 8th and that she would not be able to take me to the store, to see Dr D or any other doctor if it rained. So, a friend of mine took me to the doctor today and the CNA lost a day of work. She was not happy! Oh she was not happy at all!! It was not my intention to anger her by calling off, I just needed a sure ride to the Podiatrist. I can't count on her at all. So now she's quit and I will get another CNA. Let us hope... pray... it'll work out, even for a time.

Faith

Published on Leave a comment on On Collecting Illnesses

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

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Published on 4 Comments on Foot Stuff. Fear of Pain.

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

Published on Leave a comment on Foot Stuff. Good Stuff.

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. šŸ¤— 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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