1. Have you had your thyroid tested? I’ve had pots like symptoms for years. I have Graves’ disease, which is hyper thyroid. I also have lupus and get similar symptoms from that. The doctors are still holding pots in their back pocket tho. Stuff like this is always hard to figure out with the overlapping symptoms.

  2. My kids are elementary aged now, luckily not climbing all over me anymore. It really is a hard awful adjustment. Over time my kids have learned how I am able to interact with them, in ways that don’t cause me to need days of rest afterwards. Kids are tough having to navigate these hard realities with me. Being open about how I feel and involving my kids in how we can make it work has made a big difference. It is still rough. But it’s better.

  3. I’m sorry your experiencing and having to deal with this. Life can be challenging enough without lupus. I don’t have any medical advice, but can share from my experiences of having lupus and other chronic diseases over the last 30 years. You will have better days ahead. Very rarely does lupus get worse and just keep getting more worse everyday. We have bad times (sometimes really bad like you’re experiencing), but then sometimes lupus and our bodies will give us a break and allows us to feel somewhat normal. Always try to remember you will have more “normal” days ahead. Also remember that everything you are feeling emotionally is normal and to be expected. Wishing you the best.

  4. Thanks. I had Graves’ disease before I had lupus, and psoriasis/psoriatic arthritis since I was a child. Coincidentally I also have hashimotos markers or something. That one is playing hard to get(and I am ok with it)The adding on of new diseases sometimes feels like a bingo card, haha. It really is a game of you’re doing ok…and then you’re not. I appreciate your insight

  5. I want it to be about mormonism. I would rather they did this due to the forced intimacy that wearing green aprons together gives them. I would rather that then they did this because my family has some sort of a child ranking system... like Sister A is #1, etc, etc and I am just far down enough I didn't make "the cut."

  6. I feel the same kind of ranking in my family. My mom is always doing things like this to me as well. It is so hard on my kids. I don’t even know how to explain it to them. And they’re very aware of how people exclude others due to beliefs. And how absolutely wrong that can be. It hurts more as your own family I guess.

  7. I’ve had the same problem with my family. It has been pretty depressing for me. Recently my brother said to me that “we all have 24 hours in a day” Which was it for me. The constant barrage of demanding fake positivity or being ignored has harmed me for too long. I am currently keeping my distance from them. It sucks to feel so alone. Hopefully in time we can both find a better support system.

  8. I read this, I’m not sure when. Maybe within the last month. My 8 year old dog was attacked by a husky type dog, maybe 2 weeks ago. I was able to get the dog off of him by using this trick.

  9. It is rough. My kids are 12, 10, 8, and 6. I often struggle with the fact that they have grown up watching me decline. When my kids were younger , they would do whatever they were doing in my room. Especially my youngest. We would look at books, draw, watch shows. All of that in my bed. I find that having patience and compassion for both myself and my kids helps me the most. You know-acknowledge that I feel awful most of the time, and that I am limited. And also acknowledge their feelings about it. That I’m boring or always in my bed or whatever it may be. That has helped the most. They have become more patient with my limitations. Things are always ebbing and flowing.

  10. One of these things is not like the others, one of these things has access to multiple braincells.

  11. I don’t think he knows it though 😂

  12. Same here. Face rash is always my first cue that I’m either getting an illness, or heading into a flare.

  13. I have a wheelchair that I got from a thrift store. It gives me something to lean on when I’m walking. And when I need to I can sit to be pushed. At home I have a Segway that I’ll ride around. Really helps me be able to keep up with cleaning.

  14. For the disability thing for the car. Do you have to be on disability first to get that, or is that something the doctor can do for me? I am pretty close to getting disability I think, they are taking forever but yeah. That would help some as far as going places. How do you deal w these issues and having so many dogs? Mine are mostly big dogs. I have one small dog and the rest are big huskies (smallest is 50lbs, largest one is 100lbs), and it's rough but I adore them all and I'm not going to get rid of any of them. They have a good life with me it's just hard on me having to push so hard to make sure of that. It's been hard for me to accept how much I'm slowing down as well. When I was in my early 20s I worked alot, supported myself, was living my own life. Then I got sicker and ended up in the hospital like I said before and I haven't been able to keep a job since, I can hardly do daily tasks sometimes. My mom has had to step in and help me alot. And I hate that. Should be the other way around. It makes me very depressed and upset because I had much different plans for my life than to end up disabled by 30.

  15. My doctor filled out the paperwork for me for the car thing. I’m not on disability. Don’t qualify due to not having enough work hours. The kicker is I don’t have the work hours because I haven’t been able to work. I’m kind of the same with my dogs. They push me to my limit. But they mean so much to me. I have 4 kids who are old enough to help out. It was awful when they were young, I had no diagnosis, and felt more awful due to their age.

  16. Oh okay cool, I'll have to ask my doc about that then. I never even thought to ask them about it for some reason. I guess I thought I'd have to qualify for disability first. And yeah that's crap that you have to have work hours for it. I'm lucky I was able to work when I was younger so I have enough for it thankfully. But not everyone does and that doesn't mean they aren't disabled. They have made this a horrible process for me and I've already been denied once, even tho I cannot hold a job because of all my issues. They really don't actually want to help disabled people. At least that's how they make me feel. But I keep pushing because it's the only way I can have my own money and some independence. I haven't had kids, I don't think I will end up having kids, so I don't have anyone to care for me outside of my mom, who Is also disabled (due to a bad car accident). I may be looking into a caregiver here soon. Idk. But it sucks the doggies keep you maxed out too but its nice to know I'm not alone in that. They make me get out of bed and walk and do things so that is a plus. Just sometimes they need more than I can give, active wise.

  17. I was raised in a cult like religion and having kids wasn’t fully my choice, due to the conditioning I went through. But it is what it is. It really is hard getting through some days. I actually didn’t know I could get a disability permit without being on SSDI until I asked here! We gotta stick up for each other. This is the only lupus community I have. Have not found any local to me. And everyone local to me just wants to befriend my illness to sell me their product from their mlm 😮‍💨

  18. What doctor treats you for PMDD, if any treatment? I’m in a similar boat. PMDD, narcolepsy. And Dealing with Lupus ADHD and OCD as well.

  19. Me. Had arthritis before lupus. My 8 year old has the same, also has arthritis. It is hard to find doctors that know anything about it to help get treatment.

  20. Calling myself out here-I don’t know how to edit this post to scratch out the email I missed. Can I do that? Or do I need to just delete it?

  21. Anyone else super annoyed by the surge in random red underlines and circles in text posts now?

  22. Are they random? Or are they all pointing to the same script reused over and over again?

  23. I always let a new doctor know upfront that I have ocd/adhd/ptsd. The good doctors understand that my lupus symptoms are not related. The bad ones have definitely tried the route of me needing to work on that. They do tend to play off of each other, but overall I’ve done enough therapy/treatment to know what is mental and what is physical. It is a laugh sometimes. Getting a doctor to trust a person about their body.

  24. My 2 year old Vangogh is doing the exact same!

  25. I’ve been working on self compassion with my therapist for awhile now. It’s really helped me. And I’m able to use the skills to help my kids/spouse cope. It’s hard and frustrating for them too. Giving use each our space to grieve has bee been so helpful

  26. I have both Lupus and PsA. Doctor is thinking that the lupus has caused a different set of arthritis than PsA has. I’m just a hot mess getting messier over here.

  27. Thanks for sharing. It definitely is a situation where it was inappropriate. I’ve spent time trying to rationalize it. But I know what it was, and hearing other experiences helps me to clear my head. I’ve since found a doctor that has been more than helpful.

  28. Tell them if you’re uncomfortable and would prefer to skip changing into a gown. But they can check more skin area for rashes in a gown than in clothes. So if it was both joints and skin, a gown makes sense. Joints can typically be felt over clothes, potentially partially changing or removing layers if needed. Plus it can be helpful to bring in photos of anything visible.

  29. The doctor was made aware that I had no rashes at the moment. None of my joints were inaccessible via my clothing either.

  30. Awe. He looks like my Rudy. She’s supposedly lab shepherd mix.

  31. This dude is gonna be a serious contender on

  32. You’re right. He was🙀 they introduced me to this page.

  33. Hahaha, I heard dial up the other day and I’m pretty sure this was my exact face.

  34. Glad to see another mix that is a skinny little thing. My mix is probably 8 mos, with the metabolism of an Olympian no doubt.

Leave a Reply

Your email address will not be published. Required fields are marked *

Author: admin