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6

Where are my coping skills? Where is my ability to handle my health issues?

I wish I could say I am emotionally better than the last time I was in the hospital but I'm not. I'm just as shocked and stunned asking, is this really my life? Seriously, they were going to take the rest of my foot had Dr L and his team not come in and said you're looking at this wrong. I am shocked at how close I came to more pain! That's what I'm afraid of, the pain. And I'm stuck in the fear of hospitalization trauma. I'm stuck.

How many journal entries can I write where I talk about my health? So I write yet another bc my platelets are low. I'm physically exhausted! I'm emotionally exhausted from the up and down, from the constant medical crisis... one after the other.... I'm just exhausted. And I'm stuck in fear and shock. Can I get through next week without some health issue, please?

I can't seem to get my emotional footing. How do I do that when there's so little time between crisis? Due to health issues it feels like I stay in fight or flight. I keep waiting for the other shoes to fall. How do I breathe again? How do I feel calm inside and trust the moment? I fear becoming bitter!

I've not drawn in a month. Nothing at all. I don't even have art supplies by my bed anymore and I don't care. I have a ton of supplies, no shortage here, but there is no drive. Let me sleep, that's all I seem to want to do.

I don't tell my friends these things in detail. I have tried to tell a few but they seem shocked. They say stuff like, I'm so encouraged by you or you dealing with a lot and you do it so well. I know that's supposed to be positive but I can't reconcile it with how I feel. I am devistated and lost and afraid and tired of crisis after crisis.

Where is Faith? Where am I? I miss the girl who could find light in just about anything.

Me

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

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.

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

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

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

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

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