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Category: Lupus

Published on Leave a comment on No Osteomyelitis. Chronic illness is expensive.

I was tested twice more and the final answer is no. I don't have a bone infection. No Osteomyelitis. The infection from the ulcer reached deep, but the bone wasn't infected at all. I'm in the clear on that one. Also, after 2 months and much fuss, the ulcer is nearly gone. I'm not even on antibiotics anymore because they knocked out the infection w the blast of antibiotics in the hospital and oral meds. I'm now on acidophilus supplements to clean up what the antibiotics left behind. So, I'll see the Podiatrist one more time in 3 weeks then I'll be 100% cleared of this tribulation. Boy has it been crazy.

I started acidophilus because there was a concern for C. diff, a potentially dangerous side effect of antibiotics. Acidophilus will return to the gut what the antibiotics destroyed! I can't believe the amount of antibiotics they put in my body. Wow. I'm on a topical antibiotic for what's left of the ulcer but there are no concerns w that.

I was thinking, chronic illness is expensive! I have forked out so much money this month for medications and for equipment for my wheelchair not covered by insurance. Equipment and four of my 16 medications are not covered by insurance leaving me totally broke this month. I could have been a few dollars ahead of myself but I went ahead and purchased the purple, fuzzy robe. Yay, it's here. It's purple and very fuzzy. I love it. It's worth being totally broke for a few weeks. 😁 I don't mind it for this.

In addition to medications, there's a cream my doctor wants me to use on my feet that isn't covered by insurance. I'll purchase that cream for years to come. There are essential oils for pain and anxiety that insurance doesn't cover. Compression socks and TENS units with supplies are out of pocket. Chronic illness is not cheap at all. I'm very happy to be in a much better position financially to cover most of my needs, but I know far too many people go without their chronic illness needs fully met.

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Published on 2 Comments on The Smile

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

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Published on 4 Comments on Back from the hospital

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

Published on Leave a comment on Stop that! And the fluffy, purple robe.

I reluctantly write this entry. Well, the CNA situation did end just days after I wrote that we had 2 good weeks. There was a lot of difficulty with attendance and an entitled attitude that truly got under my skin. However, when she quit a few weeks back, I allowed her to stay with the understanding that business can't go on as usual. For two weeks she came to work on time and did a great job. And then she bombed by leaving me high and dry with no care for two days. Chronic attendance problems got her fired.

It feels like every time I write an entry about how well things are going with a CNA, things bomb! I should stop writing entries like that because if I didn't know better I'd think I'm jinxing myself. Lol Man! It never fails. I write a positive post about the CNA and then things blow up.

Anyway, the company is sending out a new CNA Monday. I don't know what time or if she will be permanent. I just know that I should have a full time aide very soon.

Tune in next week for more CNA drama on Sundrip.

In other news, I'm still battling a bit of the rash on my arm. It's the last of the medication reaction. What a beast that was to deal with.

July will be expensive because I had to purchase a part for my horse (wheelchair) and several medications not covered by insurance. This would make me unhappy if I didn't have a plan to even things out a bit. Since I had to fork over money for the adaptation and meds, I figured I'd also gift myself a nice, fluffy, purple robe. Oh, it looks so soft. I'm days away from wrapping up in it. I can't wait.

Jordan

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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. 😊

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

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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

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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

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