#lupus sle

[spooniestrong]

7 years ago I got my Lupus diagnosis.

It's still uncontrolled.

[lobotheduck]

butterfly rash: check

swollen ankles and knees: check

joint pain: check

excruciatingly chronic fatigue: check

looks like i'm flaring. thank fuck there's nothing i need to do for the next two days.

[desroundtree]

The concept of boundaries is hard to understand when you are the person that doesn’t take them seriously. It’s hard to understand something you don’t believe in. Something you might not take seriously unless you’re the one being crossed. Maybe I could use that as an excuse for one or two times, but when there is consistent places where feelings are hurt, ignored or pushed aside - then it becomes more of a habit. A habit of doing on one side and a habit of accepting it on the other.

But there are times in life when we are expected to do hard things. Setting boundaries is as hard for me as it is for some people to learn and understand what they are, where I stand and not to cross them. It can be uncomfortable because I am so accustomed to letting certain things happen, to not taking things personally or seriously, to letting things slide. Maybe my personality doesn’t seem like I would be that type of person, a softy of sorts. Someone who forgives too fast and too much. But I figured out why I do. Often it is because of who someone is, or their age, or how they grew up. The truth is that has nothing to do with me, and I have to not care about WHY you are hurting me and care about the fact that you ARE hurting me. Flipping that switch can be hard for someone like me.

Things aren’t comfortable all the time. That’s just not how life works, I understand that fully. Trust me, my health issues make that an abundantly clear fact almost daily. But my feelings should not be something that are constantly hurt, it’s not sensitivity, it’s not being “too much”. It truly is understanding that your boundaries have been crossed and knowing that the person crossing them doesn’t care that they were there to begin with. That’s where the hurt comes in.

The dismissal of something you know hurts someone else, and doing it anyway.

So I hope this post will help someone think about how they treat someone else, how they understand that person and maybe taking a look into what that person needs from THEM to feel comfortable, loved, acknowledged and most of all, celebrated.

[chronicillschronicpills]

while i’m on an update train, whats my current health;

I use my tumblr as an outlet, a support community but most of all, as a personal diary of how i feel physically in the moment. it helps me track my illness so that i can accurately pass on the information to my medical team. forgive me if you find this extremely boring 

so, in essence, i’m just getting worse. my quality of life is low. my energy is non-existent and extremely severe (the worst its ever been) with bouts of extended sleeping (18-22 hours a day; and in a row). On a good day, i can leave the house to get a tea and thats it. On a bad day, i can only get out of bed to use the toilet. And i’ve been having a lot of bad days

i have a referral to a great immunologist who specialises in chronic fatigue and autoimmune disease (i’ve never been to an immunologist, only rheumatologist), however the appointment wait is approximately 3 months.  

my current blood test shows increased inflammation as seen through high c-reactive protein, low albumin, low protein, positive ANA. however, my scl-70 antibody is no longer positive, but i dont necessarily know what that means

i’ve been experiencing quite intense muscle jerks when i remain still. it happens over my entire body, not just legs. and i am not asleep when it happens. 

my pain is bad, but that is just normal for me now and can be managed through my pain meds, but thats difficult because i do not want to get addicted or have massive tolerance. ive been having node pain on my left neck and ear and clavicle as well 

my periods are whack as fuck. i have only has 3 in 7 months. my last period was so light i did not have to use any form of menstrual  protection. they are very painful. my doctor has ordered a bunch of hormonal blood tests which i have neglected to do as i have to do a fasting, morning test which has to be done by 9.30 am. this is a particularly difficult thing for me to do as my chronic fatigue is so severe. i cannot wake up at 9.30. she has also ordered to get a special ultra sound to check for endometriosis. 

skin wise, my elbows remain thick skinned and itchy and gross. i also got 3 hickie like bruises on my neck without any cause. my dry, thick, and cracking skin on my hands have subsided which is great. the prednisone cream helped a lot. 

i’m applying for a disability benefit as well as it is impossible for me to work 

the most important thing will happen at my next rheumatology appointment. my GP wants my rheum to commit to a diagnosis (at the moment it is just an ambiguous ‘connective tissue disease’ as my blood work doesnt point to anything obviously, however most of my medical team refer to it as lupus) so that we can move on with treatment options such as methotrexate, cyclophosphamide, imuran or benlysta. i am literally OPEN TO ANY MEDICINE regardless of side effects if they can help me. 

wow, congrats if you made it through this rant. 

love aston 

[lobotheduck]

I'm watching Homicide Hunter, and this episode is about a husband who has his wife murdered because she has lupus and can no longer do the things she once did and the life insurance would be worth more than keeping her alive at that point. I think being chronically ill definitely makes me distrusting and unrelenting toward long term relationships. I'd rather be alone for the rest of my life than treated or looked at as a burden.

Though, obviously if I'm entering into a relationship it's a known fact that I already have lupus, but I've seen what happens in marriages where one spouse (often the wife) develops it later in life, sometimes a decade to 15 years after getting married. You really don't know who you're with until your health and life radically changes, and things are no longer how they once were. It's better to rip the bandage off than to slowly peel it away, that only prolongs the torture.

[spooniestrong]

Unlocking CAR T: A Special Edition Patient Education Webinar | Lupus Foundation of America

Unlocking CAR T: A Special Edition Patient Education Webinar

[desroundtree]

What Colors Are You Made Of?

Sometimes there aren’t enough yellows to make me happy. To provide  me with the warmth that helps smiles glide across the faces of those around me. Yellows that jump at you and find their way into your memories.

Sometimes there aren’t enough reds to light my fire. To warm my soul and fill me deeply and from a space that I recognize, want, and need. My reds are muted, and feel like pinks struggling to find their depth. Not deep enough to stir anything real.

Sometimes there aren’t enough peaches to soothe me. To make me feel like closing my eyes and taking a deep breath is a gift I can give myself and one I deserve. 

I realize the reds are what I crave lately. A space where I can run at full speed, dance all night, and make memories for myself and those around me. Places where I am free and full and keenly aware of how important I am in this world. Not only to the people around me, but to the world at large - red is where I feel like my voice deserves to be bouncing off the pages.

There are always blues. Blues that hold to my soul and drag me to sweet places I miss. That remind me of the life I lived, what I had, and what I have always felt I deserved. Blues that feel like they slide across my skin easily like oil dripping through your fingers, running down your arm no matter how hard you you to hold on to it. It's always easier to feel blue, at least that's what I think.

But the colors, all of them, make me. I wish they blended in a way that made me feel safe like they did before, in a way that made me me shine from within, and take pride in my accomplishments and relationships. 

While I love grey, the invisibility it brings is where my comfort plays best. A part of me know how life feels when it’s the best it could be. When I am bursting with happiness and not drowning in blues and greys.

I wish I felt colorful again

[lupus-diary]

Every so often I pop back on here to give an update. So here it is!

Over all, things have been good! My rheumatologist is happy with my numbers and I’m for the most part doing well.

Expect for the recent trip to the ER. Lol

I went in with back pain and trouble breathing. (Something I had in 2018 that they ended up diagnosing as either a PE or pneumonia after finding an opacity on my lung. There was never a conclusion.) So just to be safe, I went in and got a CAT and an EKG. Everything turned out fine! The doctor suggests it’s possibly pleurisy (or pleurussy as I’ve been calling it). The CAT showed a scar where they opacity had been which means that the area as healed up.

I did a bit of digging after I got home and found that pleurisy, if not treated, can lead to pneumonia. So… through my own deductions (hi Sherlock) I’m thinking that when I went in to hospital in 2018 for the possible PE/pneumonia it was most likely pleurisy that developed into pneumonia.

All this to say, if you feel like something is wrong. Get it taken care of. Of course, easier said than done. Especially from someone who is finally financially stable. That’s not the case for everyone. And I know that.

In 2018 my hospital visit almost took out my entire savings. This shit isn’t easy and it’s certainly not cheap. But if I had taken care of myself earlier on in 2018 when I was first having these symptoms instead of waiting weeks to do something about it, I could have saved a LOT of heartache, pain, and money.

Tldr: Take care of yourselves y’all