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Tag: Lupus

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Published on 4 Comments on Therapy Review: Live free. Young Self.

We talked about figuring out how to live with instability, with the unknown. I'm not a very flexible person. I'm not spontaneous, don't like to have someone jump out and surprise me. But my health is one big unstable lion that is silent for awhile but waiting for the moment to roar. We talked about being able to find a way to enjoy life with a lion lurking around.

I was encouraged by the Oncologist the other day to keep moving forward and let them worry. He wants me to leave it with the doctors and as he said, "Keep shooting yourself." In other words, keep taking the shots! He's so funny, and so positive.

Dr. D and I discussed the financial side of chronic illness and how that can bring added stress. I'm doing a lot better about getting dolls finished. I've got one near completion and another well along. There are 3 total in the works with 2 being commissions. I've also completed one painting and am working on others. This should help add more to my Etsy shop for extra income.

We also talked about my own inner child doll. I was unable to hold her or even look at her much but now she's out in the open and I just love her. Dr D asked how I feel about the little girl I once was. The first word to pop in my head was "respect." I have great respect for her and what she was forced to survive. Not only did she survive abuse, she was living with Lupus since age ten! That little girl fought hard to live. I have nothing but respect for her.

Dr D noted the change in tone and emotion for my child self. A few years ago I hurt for her immensely. Before that I was angry at her vulnerability. I was stuck on anger for a long time. I remember the humiliations like they were yesterday and thought she should have done something different to make my mother love me. I blamed her. As I move further along in healing I see so clearly what the child self had to endure. I think having an inner child doll helped me see my young self as little, defenseless, innocent. In my head I couldn't see me as young but for some reason the doll gave me something to relate my size to. Well, it worked. I see in my head a tiny kid and I have great respect for her.

This is my first biracial handmade ragdoll with long curly hair that can be combed.

Jordan

Published on Leave a comment on Positive Doctors

My Oncologist /Hematologist is such a positive doctor. Today he again told me I'm a walking miracle and that I should not worry about the future. He said to keep taking the medications, keep my appointments and move forward. He said if it happens again we'll deal with it. He explained what the doctors would do to try to save the leg and again impressed upon me the importance of taking meds every single, solitary day without fail. I assured him that I don't miss, ever! I understand the importance of it and understand what he went through to get my insurance to pay for it. I'm 100% compliant.

I was very encouraged after seeing him.

My Oncologist is a positive spirit whereas the Surgeon is very kind hearted yet a realist with a blunt side. It's obvious he cares, he was there for me during my whole hospitalization, day in, day out. But he's a realist and sometimes gives medical news with a very clinical tone, forgetting I have to live with that news. Anyway, they work great together and complement one another nicely. I'm happy to have them on my care team

In lighter news. I may need to give up Swiss coffee. Omg. A friend of mine gave me some Swiss coffee in the morning and the caffeine content was so high that I didn't sleep that night. Wow! The coffee was excellent but I was so wired it wasn't even funny. Switzerland, what did you do to that coffee?

Jordan

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Published on 1 Comment on A little this and that

It's still a bit difficult to reach out, but I did with a friend this evening. I told her what the surgeon's prognosis is. I decided to risk and tell her that for an hour or so each morning I struggle with the feeling that it was pointless to wake up. It takes a good self talk to get up and live.

In addition to talking to myself about living, I'm trying my best to complete a few dolls that my neighbor ordered. When I went to look for my patterns I discovered they had all been thrown away back when the whole hospitalization happened. I was rather upset to lose them but I have to remember that anything that was lost to the trash is replaceable. Today I ordered new patterns. Lord knows I couldn't afford it but I went ahead and did it so I can get back to making dolls and bag holders. I don't want to put off doll making any longer.

I was able to go to the Kingdom Hall tonight. Boy was it helpful to worship in person and to see everyone. It was really good.

Here is a picture of Joey taking over my favorite blanket. Lol. Joe is very different from my old kitty Mary Jane.

Best blanket ever

I have to remember not to measure him by other pets. I just need to let his light shine without conditions. He's a good boy. He doesn't eat my plants or destroy anything. He doesn't bother me when I sleep and he uses the box without exception. He's quiet, loving, friendly and eats whatever you put in front of him. He really is a good boy. I just adore him.

Draw something mom.

It's time to sip ginger wine and go to sleep next to my furry buddy. ❤️

Faith

Published on Leave a comment on Curl up

Part of me just wants to curl up in bed and do nothing. I just want to get in a little ball and sleep. There's stuff to be done but I sure don't want to move from this spot.

Tomorrow is therapy. I wish I was going in instead of talking to him on the phone. I'm clinging to him right now.

I keep wanting to reach out to people but I don't. I don't know why. I know better than to isolate. It doesn't help at all.

I know I'm depressed and frightened by the news from the doctor. I'm down because of not being able to get pain meds but one really good thing is that I have cbd oil covered for October. I don't have to worry about that at all. October will certainly be tight, but I'll have all my needs met.

Though I shouldn't stay in bed much longer, it is nice to snuggle with my buddy Joey Schmoey. 😁❤️

I think tomorrow life gets back to normal. My regular CNA has been off sick with the flu for a week. Poor girl. During that time I've had hit and miss care with a period of 2 hours for 3 days. No CNA but for 2 hrs out of 3 days can be rough, but I think she'll be back tomorrow. Let's hope.

I need a shower and a hot cup of tea. The reality is, I'm going to lay here w my warm 7up and fuzzy cat.

Faith

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Published on 4 Comments on Show of Strength

The problem with being told I'm strong is that it seems to give onlookers permission to let me be, do little, and go on as usual. I hate being told I'm strong because of all the hidden messages with it.

My doctor and I had conversation where I was asked if I really wanted to know about the true nature of this illness. She said, is it better to know than not to know? She said that at least knowing, I can be prepared. She said I'm taking it well and that I'm a strong woman. I'm strong when I can be but when strength is gone I require what everyone else requires, a friend. But if people have the idea that I'm strong at all, I'll get left. People will forget me or maybe they'll push me to the background and go on with life as usual denying that I'm falling apart because it's easier for their pain. It feels so negative. Alone. Labeled strong for the self preservation of others.' Yeah this is bad but she can do it, she can take it.' I hate being called strong.

Today I was neither strong nor weak. I just managed through some severe fatigue and a few flashbacks from the hospitalization. My CNA was here when I was lying down and the flashbacks started. I turned over and dropped a few tears because the thought of doing that ever again is heavy. It took two or three minutes of silent tears and I was able to gather myself. I cry so quietly that unless you're right beside me you may not realize it at all. The CNA didn't know a thing which is exactly the way I wanted it.

As the doctor said, knowing means I can be prepared. I can, and so can the doctors. They know what to look for. They know the signs and how bad it can quickly get. (My heart is so heavy.) So yes, it's better to know what medications, what procedures, what surgeons and what hospital should be involved. We know who will speak for me if I can't speak for myself. Most of all we know this mixed up, emotional, half broken, headstrong woman wishes to live.

Jordan

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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

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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. 😁 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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