Lymphedema

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Invisible Battles: How My Body Is Seen

I am obese. I use a wheelchair. When I arrive somewhere, I park in the handicapped spot then carefully get out and walk, often just a short distance, to the trunk of my car to pull out my wheelchair. When I can, I push myself forward, determined to stay as active as possible. But soon the pain in my legs from lymphedema becomes too much and I settle back into my chair to rest and recover.

For two years, I hid from society, scared of what they would think or say, but no more. Now I face the world as I am, with all my struggles and strengths, refusing to let fear keep me from living my life.

To most people, what they see is only the surface: a person in a wheelchair who is overweight. Some see a person who they assume is lazy or unmotivated, someone taking advantage of a handicapped space or making a choice to be that way. I have heard the whispers, the stares, even outright comments when I am parked. "Why does she need that spot?" "Looks like she can walk just fine." "Maybe she should try harder."

These judgments sting because they miss the full story. They do not see the relentless swelling in my legs, the deep ache that can make every step agonizing. They do not see the years of health battles, the fatigue that drains me before I even get to the store. They do not see the courage it takes just to get out of the car and push myself forward, step by painful step.

Inside, I feel a mix of frustration, sadness, and sometimes anger. I want to scream that my body is fighting a battle no one can see. But instead, I breathe deeply and remind myself that my worth is not defined by what strangers think.

I cope by focusing on what I can control. I surround myself with people who understand and support me. I find small victories in pushing my wheelchair a little further, in doing what I can despite pain. I speak up when I can, gently educating those willing to listen about invisible illness and chronic pain.

Most days, I remind myself that compassion, for myself and others, is what truly matters. My body may look different than what society expects, but it carries me through every day with strength and resilience. And that is something no one can take away.

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From Active to Adjusting: Life Changes After Sepsis and Chronic Health Issues

Two years ago, I was rushed to the hospital by ambulance after my husband called 911. He found me very lethargic and confused in bed. I remember parts of the ambulance ride, like having a high fever and the paramedic calling the hospital to get permission to start IV antibiotics. At the hospital, I was mostly drowsy, but I do recall the sepsis protocol being started and being admitted to the ICU.

Since then, I’ve faced many health challenges. Doctors aren’t sure why, but the sepsis seems to have affected my lymphatic system in my abdomen and legs. I developed lymphedema which caused my legs to swell, and even a small scratch causes fluid to leak for days. I also developed wounds that required wound care and in-home nursing to help with dressing and treatment.

Using a wheelchair and walker was a big adjustment. I can now stand or walk for about 8 minutes, but fatigue easily and sometimes collapse if I push too hard. I have to elevate my legs most of the day and attend physical therapy. Before all this, I was very active, I practiced Jiu Jitsu daily and worked as a special education teacher. Now, I mostly use a recliner instead of a regular chair.

I’ve tried for over a year to find a part-time remote job without success. Recently, I started volunteering virtually for a nonprofit that advocates for people with mood disorders, which has been very rewarding.

On top of these new health issues, I also live with over 20 years of PTSD, Major Depressive Disorder, and borderline personality disorder.

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Ugh...

My right foot is at least 2x it's normal size. I tried poking it with a lancet. That didn't work. I'm thinking about soaking my feet in some water and Epsom salt. It'd be effective.
I have eaten too much salt for the last few days. I've been on a garlic bread and smile potatoes kick for a few days. The dip I used had a lot of salt. But gosh it was delicious.
#sodiumsensitivity #Lymphedema

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Owwwwwwchy

My sciatica is flaring up. Both sides. But my left side is the worst. It's all the way to my toes. I only took one Norco today. I just asked for another one. It's not ideal but I never asked to be disabled, I didn't go out of my way to get hurt. So I need tools to get through life. And that's not shameful or embarrassing. I'm not addicted to my meds. I just happen to enjoy pain (free? Hahaha) minimal moments.#sciatica We might go to the dispensary tomorrow afternoon. They have a THC/CBD topical cream for $60. I just got paid yesterday. My pain level has been way too high lately. I know I need surgery but I can't get ahold of my surgeon and I gotta find ways to be functional.#ChronicPain I wish I was cute.

I just realized my right foot felt funny, kinda numb and stiff. It's over 3x it's normal size. I got the compression socks yesterday but I didn't wear them yet. I gotta make an appointment with my vascular doctor.#Lymphedema I've been so thirsty all day. I drank 116oz of coffee and over 200oz of sugar free juice. But I'm really dehydrated. My mouth is really dry and my eyes burn.#Diabetes One symptom of exotropia that I've had for a long time is closing one eye most of the time. Light bothers my eyes so I always close my right eye. But that's where the problem was first discovered.

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My foot looks like a bloated toad and other such Lamentations

I've eaten too much sodium over the last few days. My ankle is easily 3x it's normal size. My toes are pudgy little cocktail weenies. My shin can show pitting lymphedema just below my knee. I'm drinking a bottle of IQ mix (the caffeine free sugar free adaptogenic mushrooms drink). I'm trying to flush the sodium out of my system.

I thought the ringworm was just a small spot. No, no it isn't. It's in my groin and halfway across my c section scar. Each part is the size of my hand. Pauley took a picture of it to send to my doctor.

My double vision makes typing very difficult. The letters look like little ants. they're all wiggly.

My psych doctor wrote me a script for something he wrote for me 5 years ago. None of us remember why I stopped taking it. But it's literally the only thing he'll write for me to help with my anxiety.

I just took my testosterone injection for the week. I'm getting better at it. I gotta order more subQ needles.

#CheckInWithMe #Lymphedema

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Ugh

Depression leads to anxiety leads to stress leads to grinding my teeth leads to one hell of a migraine.

No 2 people are perfect together. There will be arguments and disagreements. But when you genuinely love each other you get through it together. Right now I'm upset and I need to calm down before I deal with it. She's been giving me space to deal with my brain weasels. But after I've processed my emotions, I'll be able to have that talk. Because I love her.

She just made homemade oat milk. I made some steamed sweet potato and put butter, Parmesan seasoning, and lemon pepper. It was freaking delicious!

Now Pauley is making pork chops. I explained how to cook them. My pain level is sky high and my depression is all encompassing. I'm going to make butternut squash to go with the pork chops. Maybe.

My cervical spine is really painful. My neck is grinding. The X-ray showed the vertebrae that butts up to the base of my skull is calcified. It explains why it's so stiff. Yesterday I sent a message to my spine surgeon asking if I can see him soon. I haven't heard back yet.

However I did hear back from my cardiologist. She started the email with "Mr. Caelum". I had asked if there were any safe diuretics. She said no, saying the risks outweigh the benefits. She said just use the compression socks, elevate my feet, and try to do leg exercises. Then she suggested I see a vascular doctor. She said I'm more than welcome to seek a second opinion.

I ran out of almond milk this morning. I've been using cappuccino powder to make it creamy. I've been drinking blueberry crumble flavored coffee. It's actually quite good.

We ordered groceries last night. They're getting delivered tomorrow . I ordered 5 cartons of almond milk. Should last about 2 weeks.

I really don't feel good. My tummy has been bothering me since yesterday. I took a ubrelvy for the migraine. I need a Norco for my back pain. It's at 7 right now. I'm still semi functional as long as I'm sitting.

So my day was a mess but had a few good things.

#Migraine #BackPain #Lymphedema

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Tomorrow

I've got a telehealth appointment tomorrow with my doctor to go over my lab results. They're pretty bad. She's gonna be cross that I haven't found an Endo yet. I'm on a really high dose of insulin. It's not helping. But it's making me gain weight really fast. It's kinda scary.

But I'm gonna talk to her about getting me a proper rescue inhaler. I've got dulera but that's just twice per day. When I go up and down the stairs or walk for more than 5 minutes I can't catch my breath.

I'm gonna get a refill of my Norco. I've been trying to contact my previous back surgeon but they haven't responded to my 2 emails and phone calls. As long as I am making an attempt, my doctor will refill my meds. I've only been taking maybe 5 per week. I'm trying to use my tramadol more often. I'm not addicted. And I intend on staying that way.

My doctor is concerned about my lymphedema and high blood pressure. I told her how my cardiologist is handling it and she's kinda pissed. The new meds aren't working. And I had a low symptoms day on Tuesday so my cardiologist thinks everything is fine. And even after emailing her pictures of my pitting lymphedema, I haven't heard back.

I'm so frustrated. And my anxiety is making me sick. I'll talk to my doctor about how bad my adjustment disorder is. Maybe she'll have an idea. She's a good doctor.

#COPD #Diabetes #ChronicPain #a1c #BackPain #Lymphedema #HighBP

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I've settled in on my bed and did a thing

This is the summary of my day so far:

Dr:*gently pokes my shin* I don't see any pitting lymphedema so I don't think you will need the compression socks.

Me getting home:*presses on shin for 3 seconds and I created a crater* the fuck...

Me:*calls doctor* I need your email address so I can show you my pitting edema.

Dr.: oh...

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Tuesday

I've got an appointment with my cardiologist,. Transportation will get us there about 40 minutes early. We're gonna go to the hospital cafe first for coffee. Pauley doesn't like coffee but if you've been paying attention you know it's my blood type. I might get a marshmallow caramel cappuccino. Last time we were there they had sushi. We enjoy people watching at the hospital.

I'm kinda dreading the appointment. My doctor is treating my pitting lymphedema like it's just a mosquito bite and I'm whining. She knows I'm diabetic. My PCP wrote me a script for the right kind of compression socks. I'm gonna have fun explaining how Binsons doesn't have 10s because they don't have any therapeutic benefits. And my feet are huge right now so I'm sure she'll get a good look.

I've been trying to eat less sodium. I ran out of salt free garlic and herbs blend seasoning. I'll get more on Amazon. It's just difficult cuz healthy food is expensive. Pauley is broke and has bills so I've been trying to help while also buying us both food. I'm gonna be paying $300 for her meds this week.