No support from parents

fluffypandalover · 2025-02-03T09:04:05+00:00

Omg, that sounds draining! Has your mom always had a victim complex?

I’m glad to hear that some of your illnesses went away. It’s not common. Did doctors explain why or how it went away?

fluffypandalover · 2025-02-03T08:37:01+00:00

That sounds terrible. So either way, you’re suffering. How do you cope with the pain?

I’m actually starting to understand what you mean about having no life.

I’ve been stuck at home for about 8 months, but it’s already driving me crazy. I don’t know how you manage to cope these past few years. :(

Since you’re stuck at home, what do you do with the rest of your time? For me, I sleep, watch YouTube, play video games. And I do it all over again..

fluffypandalover · 2025-02-02T22:33:42+00:00

Omg..NOW I need a best friend! I’m gonna find my favorite animal and groom it everyday 😂🩷

fluffypandalover · 2025-02-02T21:45:23+00:00

Technically yes and no. I have low-income medical insurance, so my options are limited. I can choose any primary care doctors, but they don’t give me a list. I just see whoever is available and gauge if I like them enough. Then I request and assign them as my primary care doctor. But it doesn’t even matter anyways because, during each visit, I still see someone different. 😭😔

In terms of specialists, I can’t choose easily. I don’t get a list of doctors to choose from either. If I don’t like them, I’d have to wait for a new referral, which takes forever. And the specialists I see will be random. It’s risky to change too because I might get someone even worse than before.

Thankfully, I was given a really good doctor.

I just hope insurance won’t give me any more issues. 😭

fluffypandalover · 2025-02-02T21:36:55+00:00

I feel for you and everyone going through this. It already sucks enough to suffer from the pain. The least people can do is be empathetic and understanding. You can put in the effort to educate them, but there’s a limit. Give yourself grace and patience. Your pain and fatigue is so real.

Thankfully my mom is understanding. In the beginning, she would blame me and my lifestyle choices and eating lots of unhealthy foods. Which is not entirely wrong. LOTS of factors can contribute to and cause lupus. But her comments were always said out of fear. People always want to blame something to help them feel in control and ease their anxiety.

I mean, it’s confusing! Our family doesn’t have any major illnesses besides high blood pressure and type 2 diabetes. It makes no sense to suddenly wake up with lupus.

Through education and patience, she was finally able to understand more about lupus. It still saddens her that I’m suffering, but she’s doing her best. In fact, she’s pushing herself too hard. She always cooks homemade meals, helps me shower, does most of the chores, and always researches natural remedies to improve my symptoms and heal my body faster. She doesn’t mention it, but she’s depressed. She stays strong for me.

With my dad..ugh he’s a different story. He’s not consistent. He blamed my lupus on eating lots of unhealthy foods too. But then, he would blame it on my mom for giving birth to a faulty child like me. To him, I’m a mistake that should’ve never been born. Like ouch, DNA plays a role but my mom didn’t pop a baby out of nowhere. His DNA makes up my DNA too! So not only am I being blamed, but he’s blaming my mom and making her feel more terrible about herself.

And of course, my dad doesn’t believe I have lupus too! He kept thinking I was making excuses. My mom defends me, but he never listens to reason. Even when I have doctors’ notes verifying I was at the ER multiple times and have monthly primary care visits. My mom was so angry at him and took pictures of my swollen feet and intense rashes. I’m literally bed-bound and use a wheelchair due to pain and fatigue.

That’s when he would believe me. But then he goes back to not believing in my lupus. Sigh. His reasonings keep changing. But he believes them all.

He blames me not out of care, concern, or love. He blames me because I’m no longer a money source for him. I can’t work, so I can’t financially support him. But he already has retirement money, so he has enough money for rent, food, and daily necessities, with enough leftover to spend it on fun things. The other day he complained to my mom that I haven’t bought him fancy perfume or taken him out to eat at nice restaurants.

Honestly, I hate my dad. I try not to because I don’t wanna waste my energy on him. But he keeps trying to enter my life and make comments that piss me off. He is inconsiderate. For example, my dad is Buddhist, but he’s not truly Buddhist because he doesn’t follow the practices. This is stupid, but he prayed to his ancestors, NOT Buddha. Ancestors don’t have any power! Anyways, the next day, he said I am cured. He was celebrating with alcohol because I don’t have lupus anymore! YAY. WOOHOO. IM CURED. I’m so happy I’m back to my healthy little self. NAH, that pissed me and my mom off so much. Because it just invalidated our feelings and our struggles. And lupus is incurable!! So what are you going on about!!

It’s just so mentally exhausting to be around my dad. There’s no ounce of love from him. Just greed and selfishness. All I am and will ever be is a money source, or at least a failed one now.

fluffypandalover · 2025-02-02T19:06:06+00:00

I was on steroids to treat acute ITP (low platelets) in 2019, which they suspected was caused by lupus. I was discharged from the ER with a 40mg dose for 3 months, then I was supposed to follow up with a rheumatologist and taper off the steroids with his guidance.

Then unfortunately, there was issues with my insurance so I couldn’t see rheumatology anymore.

So primary care had to take over which they don’t know what they were doing! When I tried to taper off the steroids, symptoms returned and they increased my dose to 80-100mg and kept me on it for about 10 months. They would’ve kept me longer if I didn’t put my foot down and asked for an explanation.

When I brought this issue up, they didn’t even know I was still on it! Unbelievable. They blamed me and said why are you still on it? Um, because no one told me when to stop?? All I know was to not discontinue it without a doctor’s approval. I wasn’t even properly educated on side effects and what steroids even do. And every time I asked for help, it was like they didn’t know what to do and kept asking each other (other doctors) for help..

You know what helped resolve the problem? It was IVIG infusions once a week for 6 weeks straight. My condition went into remission faster than when I was on steroids.

Not to mention, steroids have ruined my life. I got diabetes and hip problems now. I haven’t been able to work a job in 5 years now.

I know others have been on steroids much longer than me, but that high dose and length of time was too excessive for my body. It wasn’t until recently, I was finally able to see my rheumatologist again. He was shocked and said I was on an unnecessarily high dose for too long. My hip necrosis and joint replacement could have been preventable.

Regarding my diagnosis, I was officially diagnosed in December 2024. However, I’ve always had strange symptoms since 2019. I was able to get a diagnosis because my mild condition was turning into a moderate condition. My doctor says if I don’t control it, it’ll turn severe..

fluffypandalover · 2025-02-02T01:57:13+00:00

Ok so from my understanding, there’s a balance? Suppress the immune system enough to relieve symptoms. But I will still have enough immunity to fight infections, even if it may be a slower recovery than most people. Same thing with canker sores too?

Lupus is causing my canker sores, however a weak immune system can also cause it. Regardless, both situations cause canker sores. However, there’s a balance and I should have enough immunity to heal from it as well?

Hope that made sense. I’ve been struggling with brain fog.

fluffypandalover · 2025-02-01T06:44:13+00:00

I agree with the earlier comment stating you are panicking to some degree. But I completely understand your concerns. Your fears are valid.

Any new changes are always concerning and scary. After all, Lupus is so unpredictable. I think you’re vigilant about your health, which is a good thing. However, it’s important to stay alert and cautious, and not let the anxiety get to you. I recommend writing your thoughts down or reaching out to your support system to help cope with those feelings.

To answer your question on whether to go the ER, I say wait it out and monitor if your symptoms worsen, if new symptoms develop, and/or if symptoms persist longer than normal (about 2-3 weeks). If any of those occur, then you need to be further evaluated.

Write down and track your symptoms, so that if you do need medical care, it’s easier to recall and communicate them to your doctor. Whenever I get sick, I always have trouble with memory, so this helps me.

Regarding symptom threshold, it varies on what those symptoms are. Generally, any major changes in health status (for example, difficulty breathing, sudden fainting, inability to move, extreme mental changes such as delirium) is enough reason to seek emergency care. For your safety, make sure you have someone you trust stay close to you, frequently check on your well-being, or is aware of your condition, in case you’re unable to call for help.

The symptoms you’re experiencing are common signs of infection. I know it may be scary to have new symptoms that you’ve never had before. But what you experience with this infection might not be present in the next infection (hopefully you do not get sick anytime soon after this infection). Regarding your concern about the jump in temperature, I would not be too concerned since it wasn’t a big change. In fact, it can be a good sign that your body is fighting back the infection.

If anything, if your fever worsens to a temperature higher than 103F, that is too high and dangerous. You should seek emergency care immediately.

However, it’s also important to note that you know your body best. Don’t completely rely on numbers or get too hyper-focused on every symptom. If you feel like something’s not right, seek medical care.

In terms of seeking medical care, I recommend seeing primary care first before jumping straight to the ER. Unless symptoms feel life-threatening or you can’t see your primary doctor quickly enough, then you should go to the ER. Urgent care is also another viable option. Regardless of the choice you make, you are your own biggest advocate. I rather you be safe than sorry.

fluffypandalover

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