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Category: Lupus

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Published on 1 Comment on Sunflowers for the Weary

A friend of mine came over and brought fried chicken and a bouquet of sunflowers. It was too sweet. We sat and talked while I ate. I was hesitant to talk about health stuff because I didn't want to depress her. It was a very nice visit though.

Yesterday after I blogged, I went ahead and took a nap then put on an encouraging 3 part movie. I watched 2 parts of it. My goal is to find something encouraging to do when I get medical news that's upsetting. I have to accept what comes but I can also influence my attitude by feeding my head positive things; reading, movies, art and whatever else gives me encouragement. I think it'll help, so will visitors.

I hope my friends will understand how fragile I feel. My strength is flimsy but I'm working hard to keep it. However, I feel like it would take very little to move from appearing fine to showing that I'm not ok. I feel all over the place.

I have confidence in my Vascular Surgeon and my Hematologist / Oncologist. I have confidence that my therapist will be available to me just as he was when I was in the hospital. I am sure my friends, as helpless as they feel, will be just as helpful as they have been. A text, an email, a hug, it counts when nothing else can be done. It means a lot to me. I'm not doing this alone, not by a long shot. It makes it easier, ya know?

I have a beautiful boutique of sunflowers close to my bed. They're lovely. So despite my worries, despite feeling all over the place, I can add sunflowers to my list of things that made me smile today.

Jordan

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Published on 1 Comment on The Same Road

I saw the surgeon today. He didn't smile much at first. I always try to read him when I go in. I asked if he had bad news. I said, am I going to have to do that fight again, another excruciating, painful time? He said yes. I said, you could have given that news a little easier don't you think? He laughed. I said, do you say this with certainty? He said, yes, but your veins and blood aren't doing it right now.

Phlegmasia cerulea dolens. You vicious, evil demon.

I talked to him about the pain and he suggested cbd oil. I said, I'm ahead of you on that one. He said bc of how I clot, it's not a good idea to give me a nerve block or any of those injections. I'd have to stop taking my blood thinner for 2 days each time I needed an injection. He and I agree that I should not risk even two days off the blood thinner. He's sending me to a pain specialist with experience dealing with what I went through. Phlegmasia cerulea dolens in a patient with Lupus. I just shake my head because I have never felt more pain.

It's frightening, but Dr. L said it looks fine right now but his experience says all hell will break lose again. Until it does I have to learn to live without feeling like I have a black cloud over my head, like I'm just hanging around waiting for the other shoe to fall. Part of me wanted to know if I'd have to do it all again because I hoped the answer was no. I wanted him to say the worst was behind me. I hoped I would be a 90 yr old woman causing trouble in the nursing home because some whipersnapper snuck me in some chocolate and wine. What the heck am I supposed to do now? It's only been recent that I stopped thinking each day may be my last. I had a 'why bother' attitude, 'I'm just going to get another blood clot and die anyway.' Only recently have I stopped living like that.

What he said today is sobering but not 100% a death sentence. It feels like it because I barely survived my body the first time. I guess the plan is to keep making emotional progress, keep moving forward until whenever. I'll find a way to thrive and do so with my new furry boy, Joey.

Today I had myself a nice cry on the bed. He snuggled up to me then slept on my hip. He's beside me right now. I just love this guy.

Dr. L suggested I try cbd gel for my feet instead of the regular oil. I'll try to get it some next month.

Thank goodness for insurance. I may be upset about my out of pocket expenses but shoot, I take $17,000 a month in prescribed medication. I would be in serious trouble if I weren't well covered. My insurance pays for my nurse and CNA, too.

I believe chocolate should be covered by insurance.

Jordan

Published on Leave a comment on Shoes and Pride

I went to the store today to purchase cat food for Joseph when I decided to stop by the shoe section to see if I could find something I like. It was suggested by friends and my nurse that I try buying 2 different sizes, one for the full foot, one size for the amputated side. I thought I'd look today.

I rolled up to the shoes and saw a dark pastel pink pair of sneakers that really caught my eye. As I looked for two sizes I thought, ya know, I wear Converse for a reason. I can't wear these "other" things. It's just not me. Yes, other shoes are cute too but Converse are my mark. So I'm going to stick with them except for when I wear a skirt.

I had no choice but to have the foot amputated, but I do have a choice to continue to wear the shoes that I walk in that make me feel good. More on that in a second.

As a woman, shoes matter. I got rid of my birkenstocks bc of the amputation. I can hardly walk so you know pumps are out. No shoes w the back out, no slip ons. My shoe choices are quite limited right now. As a woman who loves shoes, this hurts. So when I put on the Converse, I put on something I really like that I didn't lose to the amputation.

House slippers are out. Clogs, gone. One needs toes for flip flops. Converse are one of the things I like that I didn't lose so continuing to wear them is a security for me.

I'm not sure I'm ready for the step of buying 2 different size shoes nor am I emotionally ready to venture past high top Converse. I thought I was but I'm not sure. So instead of coming home with shoes, I purchased purple fuzzy socks that match my purple fuzzy robe. I so wanted big, stuffed house shoes to match that robe but I can live with fuzzy socks. Since they were on sale I got the pink ones, too. šŸ˜ Lovin' my fuzzies.

I don't like wearing only Converse all the time, every day without exception. I long for birkenstocks and a broomstick skirt while rocking dreadlocks w homemade beads. That makes me smile. Those shoes are a thing of the past but maybe this new Podiatrist really will make me a pair of shoes I can wear with a skirt. Then I'd wear the Converse for everything else without grumbling. I like them, as I said. I'm happy I can still wear them when most shoes I can't. But skirts are a part of me, too and I'd really like to wear them without Converse.

The foot has healed 100% from the infection but of course that's not the end of the story. I've been a bit quiet about it bc it makes no sense to me to keep blogging about this&that foot crisis. It's being managed and it will hopefully not become a huge ordeal.

Last but not least, Joe the cat is awesome! He rocks. He's quiet, loving and doesn't know a stranger. He's just like me in that he doesn't like a lot of noise, but if I turn on a video he's right here on my chest watching it with me. It's too sweet. I'm so happy he's here.

Look at those big, green eyes screaming 'Love me. Love me.' Well I surely will.

Jordan

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Published on 3 Comments on Joey

He's a chatter box kitty but as sweet as can be. He sleeps on my chest and purrs. He gives me little cat kisses. This is my new buddy Joey.

Joey is a tabby male, neutered and 9 yrs old. He's calm and friendly to visitors. He doesn't know a stranger. He's got big, bright green eyes and a strong purr box. I just love him, and so does my CNA.

Originally I told the owner I didn't want to adopt Joe, but I reconsider. I'm so, so happy I did.

Three doctors suggested I adopt. I didn't want to because of guilt associated with having to give up Clyde to my friend. Clyde, by the way, is very happy and having a gay old time! He's very happy, buy I grieve losing him. I feel bad that I had to give him up, like a terrible person. I'll have to work on the reality of the matter. I can't take care of Clyde. I physically can't take care of him. But does that condemn me to never adopting again? I had to! I had to get a new fur baby.

I'm not going to try to convince people of anything other than the need for fur in my life and that I think this senior cat is just what I need.

I like his speed. The boy is chill. I like that he seeks out affection and that when I get up to leave the room, he follows. He's been here a week and I'm totally in love with this boy.

Joey has zero interest in cat weed. That's sad because watching cats on cat nip is hi-larious. He does like balls with bells. And what cat can resist a woman's hair ties? He loves 'em.

My hope is that M. Joseph Austin will help with the depression and ease some of the emotional pain that has kept me boxed.

He came with the name Joey. I added Michael and my last name so that his initials are MJ just like the kitty I has for 12 yrs before she passed. Boy do I miss Mary Jane, aka MJ.

One thing about Joe is that he is declawed. Whomever declawed him removed the first digit which means like me, he's missing toes.

Faith

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Published on 6 Comments on Where?

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

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Published on 6 Comments on Emotional Exhaustion

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

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. šŸ˜ 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 šŸ˜šŸŒ»šŸ’œ

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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