u/Hefty-Supermarket-79

I have an interview over the phone, tomorrow, to start the disability process. Again.

2 years ago, I had papers from the dr that I was seeing, to get it started. I spent hours filling out the online application....at the end, despite saving along the way, it said that less than half was saved. My hands were so swollen from typing, that I chose to save to finish later.

A few weeks later, I received a denial letter, and it said it was final. I was feeling defeated, plus at the time, had shifted my focus to my dying mom and dying mother-in-law. (Yes, same time.)

Anyway, I have periodically tried to sort out applying. A few months ago I was able to get someone on the phone and they said I had to start fresh and with a phone interview.

That is tomorrow.

Any tips? I'm self-employed. According to their system, I do qualify. I haven't worked for almost 2 years...

I'm in SoCal, Inland Empire area, if it makes any difference.

I have a grade 3 rectocele and grade 1 to 2 cystocele. Surgery is Sept 23. (Side notes: I also have EDS/connective tissue disorder, lupus, rheumatoid arthritis, and MCAS.)

My surgeon is kind and informative. She's known for being excellent. She also sends you home the same day, which I have mixed feelings about.

(Worried about pain control, mostly. But, I also have an active, neurodivergent 9 year old, 3 large crazy dogs, 3 cats, 2 guinea pigs, and 1 mostly helpful, but not super patient at home...)

Tell me everything you found helpful for this surgery. Tell me what you wished you had known. What would you do differently?

Other questions:

Besides chemical laxatives, what helped you go to the bathroom, especially if you are prone to slow motility and/or constipation? (Prunes, cherries, carrots???)

If you tend to not respond to pain meds, how did you get your dr to get you what would actually help with pain? (I often end up choosing pain over meds that don't do much, as the side effects aren't worth it...but I know I will absolutely need pain control that helps!)

How did you protect your gut from the effects of taking so much in the way of pain meds?

What were your first 48 to 72 hrs post-op like? Did you mostly sleep? What was helpful that your support folks did for you?

What was your activity level on days 3 to say 14? Did you mostly rest and do things like watch TV, read, hobbies like coloring and crocheting? OR???

When did you start taking short walks? When did you start doing basic chores? Driving? And would you change that timeline, looking back?

Thanks so much!!!

Honestly, choosing the flair was a tough choice, so many fit!

I am so tired of being tired. I am almost 54, and swear that I was born tired. I didn't get an autoimmune diagnosis until 3 years ago; rheumatoid arthritis and lupus. And had finally gotten an EDS diagnosis about 8.5 years ago (which explained so much of my life, finally).

I have a child who is about to be 9. I am trying to be a good mom who is fully present, but am exhausted all day, every day. I had paused my photography career back in 2024 to care for dying parents, but am so tired and in pain, so as much as I want to take on clients, I often have days where I only have an hour or 2 of low key energy, much less, full energy. I am trying to finish my real estate license, but am, again, exhausted.

I hate that I don't really have income anymore. I hate that I can't be the parent I want to be. I hate that drs don't take me seriously because I don't 'look' as miserable as I am.

Sigh. Vent. Whine.

I am really hoping that once Orencia fully kicks in, things will be better. Today is week 8 of injections. (I am also on hydroxychloroquine. And LDN. And HRT. And mast cell stabilizers for my gut...)

I think I just needed to vent. I wish I could take prednisone, because I know it helps some people have a boost and decrease in pain. But, I can't.

I keep thinking that if I have a good mindset, hydrate, eat good foods, get plenty of sleep, and take my meds, I should feel decent. But, I don't.

At the best phase of being on Rinvoq, I would get 3 to 4 hrs a day of functionality. But it was no longer doing that. Hoping Orencia does...

Sigh.

I check all of these boxes. It makes so much sense for me. But, what are our treatment options?

This post from the EDS Clinic is me. Completely.

EDS Clinic, cervical instability

One neurosurgeon said 'likely AAI or CCI, you don't need surgery...let's get you in to a pain specialist. '.

The other neurosurgeon said 'define instability, you don't need surgery, but let's get you in to see a pain specialist for injections '.

Ok, but is this it? Pain injections? A bit of PT? Are there other options?

Also, has anyone been diagnosed with it, AND had any dr validate that the instability is the cause of these symptoms? My brain just wants at least one of my drs to connect the dots, instead of saying they don't know why I have these symptoms. Validation would be nice...

I am curious what PT looks like for you.

My history with PT in recent years...I was referred to a place that folks say is amazing, especially if you have EDS (I do). I also have lupus and rheumatoid arthritis, along with serious need for pelvic floor PT, due to severe rectocele and cystocele.

(First place I went) It is an hour drive each way, but would be worth it for amazing therapy. I went for 6 weeks. The first week, I was put in a few different machines to test balance and such. Every appt after that, was spent chatting. Once, I did walk up and down a short path, to see my gait. Another time, at the very end, I was quickly shown a foot exercise.

I finally asked why we weren't doing more, and was told that most people can't multi-task...I went once more after that, and it was more chatting.

Ok...so I got a new referral, and had a referral for various body parts, plus a referral for pelvic floor PT. New place was definitely better. They did a mix of exercises and several minutes of massage/ massage gun on the body part that was worked on that day.

For pelvic floor PT, she did an internal exam, then just said to do some exercises that I was already doing for low back, but never really did pelvic floor specifically.

But, suddenly they shut down...and reopened a couple of their locations a few months later, and it was not the same. At all. And definitely didn't have anyone doing pelvic floor PT.

My drs thought I should try another place that also knows EDS and sees more complex folks. Cool.

It took several months to get in. They're nice enough. Seem to be more knowledgeable.

The pelvic floor PT is fun to talk to. She told me that she would need to do an internal exam. After a few months, she still didn't, ok, fine. But most sessions we chatted! She showed me 3 exercises in total. Ever.

The regular PT has me doing exercises. But, I am in so much pain...and I look around and see folks getting massage/ manual therapies...I mentioned how much I needed that, last time, and she just nodded. I've gone 10 times, and twice they've offered me a hot pack after, but that's it.

So, what is PT like for you?

I am curious what PT looks like for you.

My history with PT in recent years...I was referred to a place that folks say is amazing, especially if you have EDS (I do). I also have lupus and rheumatoid arthritis.

It is an hour drive each way, but would be worth it for amazing therapy. I went for 6 weeks. The first week, I was put in a few different machines to test balance and such. Every appt after that, was spent chatting. Once, I did walk up and down a short path, to see my gait. Another time, at the very end, I was quickly shown a foot exercise.

I finally asked why we weren't doing more, and was told that most people can't multi-task...I went once more after that, and it was more chatting.

Ok...so I got a new referral. New place is definitely better. They did a mix of exercises and several minutes of massage/ massage gun on the body part that was worked on that day. But, suddenly they shut down...and reopened a couple of their locations a few months later, and it was not the same. At all.

My drs thought I should try another place that also knows EDS and sees more complex folks. Cool.

It took several months to get in. They're nice enough. Seem to be more knowledgeable.

The pelvic floor PT is fun to talk to. She told me that she would need to do an internal exam. After a few months, she still didn't, ok, fine. But most sessions we chatted! She showed me 3 exercises in total. Ever.

The regular PT has me doing exercises. But, I am in so much pain...and I look around and see folks getting massage/ manual therapies...I mentioned how much I needed that, last time, and she just nodded. I've gone 10 times, and twice they've offered me a hot pack after, but that's it.

So, what is PT like for you?

Edited to add:

Update: I went for PT today, and she asked how I felt about my treatment so far. So I told her that I found that PT that involves a mix of exercises, massage, other therapies like TENS, etc, had been better for me in the past. She said that massage is only a temporary fix, so it's a waste of time...when I responded saying that I know it isn't a permanent fix, but that my muscles are bound up and making everything else harder, she suggested that I schedule some massage therapy 🙄

I am curious what PT looks like for you.

My history with PT in recent years...I was referred to a place that folks say is amazing, especially if you have EDS (I do). I also have lupus and rheumatoid arthritis.

It is an hour drive each way, but would be worth it for amazing therapy. I went for 6 weeks. The first week, I was put in a few different machines to test balance and such. Every appt after that, was spent chatting. Once, I did walk up and down a short path, to see my gait. Another time, at the very end, I was quickly shown a foot exercise.

I finally asked why we weren't doing more, and was told that most people can't multi-task...I went once more after that, and it was more chatting.

Ok...so I got a new referral. New place is definitely better. They did a mix of exercises and several minutes of massage/ massage gun on the body part that was worked on that day. But, suddenly they shut down...and reopened a couple of their locations a few months later, and it was not the same. At all.

My drs thought I should try another place that also knows EDS and sees more complex folks. Cool.

It took several months to get in. They're nice enough. Seem to be more knowledgeable.

The pelvic floor PT is fun to talk to. She told me that she would need to do an internal exam. After a few months, she still didn't, ok, fine. But most sessions we chatted! She showed me 3 exercises in total. Ever.

The regular PT has me doing exercises. But, I am in so much pain...and I look around and see folks getting massage/ manual therapies...I mentioned how much I needed that, last time, and she just nodded. I've gone 10 times, and twice they've offered me a hot pack after, but that's it.

So, what is PT like for you?

What guidelines, boundaries, rules, etc, do you have for your kiddos around 9 yrs old/4th grade?

What does it look like during the summer/break vs school time?

My kiddo is very intelligent, which is wonderful, but the neurodivergent aspects of her brain and personality often take over, and it is worse with screens, especially mobile devices. We had been doing zero YouTube, zero Roblox...we gradually began allowing those, on specific channels/games, in recent months.

Unfortunately, those are what we notice seem to suck her in the most, and are the hardest to have time limits on. (No lectures, please, I am diligent and trying to find the balance that helps my child feel 'normal', as she is keenly aware of her differences and is self conscious...all while setting boundaries. )

When I chat with other parents, it seems to be mostly 2 extremes: either zero restrictions or they only allow things like Disney or PBS. I would like to have a full conversation. Especially with parents who have similar kiddos: autism level 1, adhd combined type, anxiety.

We are in therapy, but it is a VERY slow process, like 9 months in and it's mostly playing Uno, which is gaining trust, but she gets super agitated when emotions or life in any way is brought up.

Sigh. Just looking for ideas and to commiserate.

I need a new rheum. In short: I am in SoCal, and have IEHP insurance. Drop your recommendations.

The long of it: I have lupus and rheumatoid arthritis, EDS, MCAS, cervical instability...I was diagnosed officially with lupus and rheumatoid arthritis in 2023, but the symptoms were there for years.

My last rheum seemed to be great. One who looked at labs as well as symptoms. Seemed to have compassion...but after the first 2 visits, the appts were less than 5 min, she would just say to me, 'just keep getting better!' No matter what I asked. She was also impossible to reach outside of appts, for any reason. None. And if she was on vacation and it was time to be seen, you just didn't get seen, because she didn't allow you to see or talk with the other rheums in the practice, even for an emergency.

I switched to a different Dr this spring. First visit was ok, he didn't say much, just that he wasn't surprised that the med I was on for rheumatoid arthritis was not working well.

Next appointment was so frustrating. He told me that I never had lupus, because my numbers are low now. I asked about how previous drs say that if you're responding to meds, that can happen. He said that is not true, that all of those drs needs to go to medical school 🙄

I asked about all of my previous labs that showed definite lupus, and he said that did not matter, someone read all of them wrong 😳. He said that despite all of my previous labs showing lupus, and my kidney involvement, I should forget 'all of this lupus nonsense '. I just have photosensitivity.

But he would keep me on hydroxychloroquine because it can help my pain from EDS...

My nephrologist (who specializes in lupus and confirmed that I have lupus), had diagnosed me with kidney involvement, stage 2 kidney disease, but stable...and now I am showing labs with stage 3a. I really need a good rheum on my team.

I don't mind driving a bit or having virtual appointments. I'm in the Inland Empire area, but have drs in Irvine and L.A. and don't mind heading toward San Diego...

I need a new rheum. In short: I am in SoCal, and have IEHP insurance. Drop your recommendations.

The long of it: I have lupus and rheumatoid arthritis, EDS, MCAS, cervical instability...I was diagnosed officially with lupus and rheumatoid arthritis in 2023, but the symptoms were there for years.

My last rheum seemed to be great. One who looked at labs as well as symptoms. Seemed to have compassion...but after the first 2 visits, the appts were less than 5 min, she would just say to me, 'just keep getting better!' No matter what I asked. She was also impossible to reach outside of appts, for any reason. None. And if she was on vacation and it was time to be seen, you just didn't get seen, because she didn't allow you to see or talk with the other rheums in the practice, even for an emergency.

I switched to a different Dr this spring. First visit was ok, he didn't say much, just that he wasn't surprised that the med I was on for rheumatoid arthritis was not working well.

Next appointment was so frustrating. He told me that I never had lupus, because my numbers are low now. I asked about how previous drs say that if you're responding to meds, that can happen. He said that is not true, that all of those drs needs to go to medical school 🙄

I asked about all of my previous labs that showed definite lupus, and he said that did not matter, someone read all of them wrong 😳. He said that despite all of my previous labs showing lupus, and my kidney involvement, I should forget 'all of this lupus nonsense '. I just have photosensitivity.

But he would keep me on hydroxychloroquine because it can help my pain from EDS...

My nephrologist (who specializes in lupus and confirmed that I have lupus), had diagnosed me with kidney involvement, stage 2 kidney disease, but stable...and now I am showing labs with stage 3a. I really need a good rheum on my team.

I don't mind driving a bit or having virtual appointments. I'm in the Inland Empire area, but have drs in Irvine and L.A. and don't mind heading toward San Diego...

You know how your eyelid will twitch when you're excessively tired or for some folks, super stressed? And how if you're dehydrated or over do a workout, you get the occasional Charlie horse in your calf?

Well, my body is full of both, twitching and cramping as if it's trying to start some kind of new dance move that isn't going well.

Twitching: It's in so many places on my body. For a week, there are 3 spots on my right arm that are trying to party, day and night. And randomly other parts join in. The last few days it's been a spot on my left butt cheek and a spot on the inside of my right kneecap. And as I write this, my entire right quad is performing some rhythm that I didn't ask for.

Cramping: I have been waking more often with calf Charlie horse cramps. But, my toes are cramping while I am relaxed!! Over and over again. The muscles around my ribs cramp when I move into all different positions. The rib area cramps used to happen every time I laid back in a dentist chair or on a massage table. Now, it happens so often and usually quite unprovoked!

My basics: I have rheumatoid arthritis, lupus, EDS, MCAS...I hydrate a lot (I make a drink with water, fresh lemon, salt, creatine, and chia seeds, as I can't do the mixes or pre-made kind). I stretch gently, daily. I take 2 forms of magnesium. I am complicated, lol. But these new developments are very frustrating!

You know how your eyelid will twitch when you're excessively tired or for some folks, super stressed? And how if you're dehydrated or over do a workout, you get the occasional Charlie horse in your calf?

Well, my body is full of both, twitching and cramping as if it's trying to start some kind of new dance move that isn't going well.

Twitching: It's in so many places on my body. For a week, there are 3 spots on my right arm that are trying to party, day and night. And randomly other parts join in. The last few days it's been a spot on my left butt cheek and a spot on the inside of my right kneecap. And as I write this, my entire right quad is performing some rhythm that I didn't ask for.

Cramping: I have been waking more often with calf Charlie horse cramps. But, my toes are cramping while I am relaxed!! Over and over again. The muscles around my ribs cramp when I move into all different positions. The rib area cramps used to happen every time I laid back in a dentist chair or on a massage table. Now, it happens so often and usually quite unprovoked!

My basics: I have rheumatoid arthritis, lupus, EDS, MCAS...I hydrate a lot (I make a drink with water, fresh lemon, salt, creatine, and chia seeds, as I can't do the mixes or pre-made kind). I stretch gently, daily. I take 2 forms of magnesium. I am complicated, lol. But these new developments are very frustrating!

Question for those on Orencia self injections. I just had my 3rd last night. Made me extra sleepy. I slept almost 12 hrs..

Today my stomach is messed up...I have read that it's not super common, but happens. Any feedback on what helps or how long it lasts?

I have 3 domains and they are on Squarespace, and I want to forward 2 of them to one of them. I know longer need to have 2 separate websites. I will still own the domains, but only have to host and monitor and update one actual website. Part of what complicates it is this: I am already forwarding the domain I want to keep using to one of the other ones. Let's call the domain I will actually keep an active site on as Site A.

Currently site A is forwarding/redirecting to Site B. I want to keep the information and everything about Site B but have the primary website that you type in, as Site A. Is this possible? Can I copy the info into a new site at Site A, from B? Or can I somehow change the actual address from B to A?

I have tried reaching customer service with no luck...

I wasn't sure what flair to give...

Curious if there are folks near me that might be interested in meeting up to scrap? I'm in the Inland Empire area of SoCal...and I just haven't met anyone who is truly interested in scrapping.

I used to have a group that met once a month, we would scrap or stamp, have a potluck, play music, and crack each other up. We even had a secret sister swap, with a $10 limit, and rotated every 3 months. Once a year, we would go away for a weekend and craft and eat and just relax...

Sigh...

Signed,

A Gen X, semi-crunchy, big hearted, goofy scrapper.

I used to scrap like crazy. Went through divorce, raising 2 bio kids and 2 foster kids, got remarried, had a baby at 45...so. it's been awhile. Like, 15 years since I really scrapped.

I've spent time organizing papers and stickers and all of the things. But I need to order oodles and oodles of photos...

I am curious. I am trying to decide, categories...

For example:

I was putting all Disney related photos in a folder to scrap. Planned on them being in one album. But some were on birthdays...so, do I not put them in Disney albums, and put them in the albums of said birthday person??

Or, do I put most in the specific person's album, and a few in Disney...

Also, if you print very large amounts of photos, where do you print from? Mpix has great quality, but for mass amounts, I can't spend that much.

Shutterfly is 'free' but their shipping still makes it come out to like .12each. Doesn't sound bad, until you spend $60 on free photos, lol. Snapfish is similar.

I have recently stopped taking Rinvoq for RA to switch to Orencia injections. I was on Rinvoq for a total of 16 months. It was decently helpful, but I was still fatigued immensely (just less so) and had lots of pain (again, just less), but any relief was welcomed.

Anyway, while on it, acne was a bugger. In my 50s, I was hoping to not get new acne. But, I felt it was worth it. I have been taking spironolactone for the acne. As for weight issues, not sure. I have struggled since my mid 40s to lose weight, due to inflammation, SIBO, perimenopause, etc. However, I had finally lost about 9 lbs last year and it stayed off for several months...then crept back. Maybe due to Rinvoq?

Anyway...

Since stopping Rinvoq, I am horribly sleepy, as expected, while waiting for Orencia to kick in. But, I am feeling more down, blue, unmotivated...has anyone else experienced this? Just very off feeling.

I am hoping the acne and weight settles down, as they're not supposed to be common with Orencia...

I have recently stopped taking Rinvoq for RA to switch to Orencia injections. I was on Rinvoq for a total of 16 months. It was decently helpful, but I was still fatigued immensely (just less so) and had lots of pain (again, just less), but any relief was welcomed.

Anyway, while on it, acne was a bugger. In my 50s, I was hoping to not get new acne. But, I felt it was worth it. I have been taking spironolactone for the acne. As for weight issues, not sure. I have struggled since my mid 40s to lose weight, due to inflammation, SIBO, perimenopause, etc. However, I had finally lost about 9 lbs last year and it stayed off for several months...then crept back. Maybe due to Rinvoq?

Anyway...

Since stopping Rinvoq, I am horribly sleepy, as expected, while waiting for Orencia to kick in. But, I am feeling more down, blue, unmotivated...has anyone else experienced this? Just very off feeling.

I am hoping the acne and weight settles down, as they're not supposed to be common with Orencia...

Are there any Facebook groups or Reddit subs for folks with autoimmune disease specifically for Southern California? I am in a CA lupus group, but it's not active. I am looking for recommendations for a rheumatologist in SoCal that is kind and not dismissive, bonus points for being knowledgeable about EDS. Even better if they take IEHP insurance. (I have rheumatoid arthritis, lupus, EDS, and all kinds of complex issues going on.)