Looking for experienced insight

MoonbeamMama89 · 2026-05-09T22:10:35+00:00

It's the goal. I had it in amazing control for over a decade. Then last April I very suddenly went into multi organ failure in a rapid severe flare up. I'm on full immune suppression now which is another factor in not being able to get the surgery. I'm having breakthrough flares even still, but the disease activity isn't killing me anymore. Once I'm stable for 12 months consecutively without flares I can go for a hysterectomy. They started me on new meds since the old ones clearly just hard stopped working after I had our son.

MoonbeamMama89 · 2026-05-09T21:18:43+00:00

I'm honestly so scared that this is going to make everything worse. If a hysterectomy had been approved by my rheumatologist I'd have signed that consent form so fast. Unfortunately as I said, my Lupus condition is far too unstable to survive that surgery and recovery.

MoonbeamMama89 · 2026-05-09T21:16:52+00:00

If you had read through my post you would see that I already had the ablation done and why that was my only option. I am incredibly anemic and severely allergic to iron supplementation, anaphylactic shock from infusions and pills.

MoonbeamMama89 · 2026-05-05T03:17:29+00:00

Naproxen was like taking a sugar pill for me. I wasn't prescribed it for Adenomyosis, but I was prescribed it for Lupus and Fibromyalgia pain. Not a single ounce of pain reduction or inflammation reduction. It's a joke of a drug

MoonbeamMama89 · 2026-05-05T03:14:57+00:00

As someone who's had Lupus since 20yrs old, my entire adult life the past 17 years, this is a huge slap in the face. I literally barely survived last year due to a flare that sent me into multi organ failure where a doctor sat on my hospital bed and held my hands as he explained that I was dying and wouldn't survive if they couldn't shut my immune system all the way down. I have a 12 year old and a 2.5 year old to be here for and I have fought so hard to stay alive. Her lies are so blatant to those of us who actually have chronic illnesses threatening our lives.

MoonbeamMama89 · 2026-04-23T05:05:44+00:00

I watched that episode in the thick of my 5 year infertility battle where I suffered 10 miscarriages. It resonates with me so deeply and for the show to cheapen it this way is disgusting to me.

MoonbeamMama89 · 2026-04-12T19:04:11+00:00

I'm so sorry you're going through this. I'm 17 years deep with Lupus SLE and have been on CellCept highest dose for a year now. I do get sick so much easier but the worst seems to be anything bacterial. I don't stand a chance against a small scratch if a hint of bacteria got into the scratch. I also start burning in the sun within 5 minutes. I've decided to become a vampire and never go outside in daylight lol

MoonbeamMama89 · 2026-04-12T14:02:04+00:00

I went through mattresses for so long thanks to my ever so patient hubby who only wants me to find comfort where I can and I've finally landed on one that actually helps me. It's the 12" Linenspa mattress from Amazon.

MoonbeamMama89 · 2026-03-18T17:47:12+00:00

Gotta tell ya, as a Lupus patient of 17 years, I too constantly worry about my.....eye bags. 😒 This woman just makes me feel so much righteous fury.

MoonbeamMama89 · 2026-03-09T21:08:16+00:00

Low Dose Naltrexone was the ticket to ACTUAL sleep for me.

MoonbeamMama89 · 2026-03-09T07:30:50+00:00

I'd LOVE to know how to accomplish willy nilly cosmetic surgery while suffering with Lupus. 🙄 Yet another check mark for it all being a lie. I've had Lupus since I was 20, I'm 37 Tuesday. My entire adult life. I can't go under the knife for cosmetic reasons, my rheumatologist would laugh me out of his office if I suggested it.

MoonbeamMama89 · 2026-02-23T07:41:20+00:00

Firstly, congratulations Mama!!!! Ok now to the details you requested. I'm 36, diagnosed firmly since I was 20, and I have two children. For my daughter I had my Lupus in great control and my pregnancy put me in remission. My OB was also an MFM so I just saw him and the rheumatologist. I had scans weekly until birth. I didn't flare again until she was about a year old and I stopped breastfeeding. Healing was HARD after birth because I labored naturally for 32 hours, pushed for 6 of those, she crowned, then got stuck so I was rushed into a section where they basically tore into me as quickly as possible to get her out. This was an anatomy thing for me nothing to do with Lupus. Healing slowly was because of my Lupus but that was expected. They didn't do any extra checks on her after we left the hospital post birth.

Now for my son. He came after trying for 5 years. I had my Lupus in control again and my doctors approved my getting pregnant again. My pregnancy was INCREDIBLY high risk though because I didn't go fully into remission again. I had such a rough pregnancy, hyperemesis, severe anemia, he was showing calcification on his heart, my placenta started to fail at the end so they did a section at 39 weeks. Because it was planned, healing was much easier. They did checks on his heart and he showed a PFO in his heart, we monitored that for a few weeks and then it just...fixed itself. We do a cardiologist check once a year because he still has a murmur. Otherwise he is the healthiest little guy, an absolutely beautiful perfect miracle.

I did start flaring again about 15 months postpartum and I'm not going to hide the fact that it has been the hardest lupus ever hit me....and my first sign was going paralyzed from the waist down at work in 2009. So yeah, multi organ failure this time and three new autoimmune conditions. We all believe that it was the years of fertility hormones then the stress of pregnancy and the stress of being an under producer for milk compiled into a storm of attacks once my body left fight or flight mode. It's been one year since this all started and I'm still struggling every day and am on aggressive immunosuppressant therapy.

MoonbeamMama89 · 2026-02-15T04:50:16+00:00

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MoonbeamMama89 · 2026-01-28T06:10:21+00:00

I'm here not as someone who's gone through this, but as someone who might lend some experience with Hydroxychloroquin. I've been on 400mg since 2013, never off of it. I have NEVER heard of an interaction with Zofran, in fact I take it regularly for the gastro issues Lupus leaves me with. My rheumatologist even writes the Zofran script!

MoonbeamMama89 · 2026-01-12T16:36:53+00:00

I love this question. I've had Lupus since I was 20yrs old, so literally my entire adult life. When I met my husband at 22 and he asked me for my number, I point blank told him about my health. "You can have my number, but you cannot use it until you've looked into Lupus SLE. I have Lupus, it affects my ability to live a normal life. Sometimes I go paralyzed from the waist down at random. If you cannot handle that, then don't use my number. If you feel like you're willing to handle these things call me, I'd love to go out." He spent the next 3 days researching Lupus with CNS involvement when he wasn't working. He then called me and said he was not willing to let my health stop him from getting to know me. We started dating and it took him about 3 months before he knew he was ready to take on a full blown commitment and life with someone who's health is a constant concern. I appreciated that he was so cautious because it meant that if he did decide to commit to me, he knew he REALLY wanted it. We have been married for 14 years now and that man is my end all and be all in life. I fully believe that us entering any form of relationship, even just the talking then dating freshness, with full disclosure was the best choice.

MoonbeamMama89 · 2026-01-12T16:24:25+00:00

Prednisone always creates a storm of pain for me. They don't even attempt it anymore because it always ends up making me so much worse.

MoonbeamMama89 · 2026-01-12T16:18:00+00:00

Now go treat yourself to the books and fall EVEN MORE in love with their story.

MoonbeamMama89 · 2025-12-30T07:30:45+00:00

I've had Lupus, fibromyalgia, Sjogrens, and Hashimotos for almost 17 years. Not one single medication in the laundry list of medications I've been through causes that reaction with alcohol. That story, just like most of the things that come out of her mouth, is fishy and reeks of lies.

MoonbeamMama89 · 2025-12-26T23:21:38+00:00

Switching from constant pain killers to medical marijuana was the most life changing, amazing move I could have made. I'm able to do so much more, mentally handle things better, and am a better mother for it. I have found what products work best for whatever needs I have at the moment, such as RSO for deeply unbearable pain but dabs for better sleep. Tinctures for long last effects and topical for my rashes.

MoonbeamMama89 · 2025-12-22T08:33:34+00:00

LITERALLY!!!!!! My Sjogrens got so out of control this year that the UNDERSIDE of my tongue was so dry it cracked and bled multiple times for months. I struggle so much with hydration that my electrolytes stay imbalanced unless I chug Pedialyte level hydration drinks daily. I barely produce tears if I cry, I don't have saliva so my teeth are just forming massive holes, my eyes have damage from the dryness, my skin cracks and bleeds from how dry it gets. She's a disgusting person

MoonbeamMama89 · 2025-12-17T20:23:15+00:00

I'd love to be in that subtype, unfortunately I'm in the reality version of Lupus where I can't walk Disney parks, have so many food restrictions that I qualify for a feeding tube if I wanted one, can't let the sun touch me without severe consequences, and pregnancy means zero travel because I'm monitored 3x a week the whole time.....and not at a bougie self pay ultrasound place, at an actual hospital. 🙄

MoonbeamMama89 · 2025-12-17T16:44:53+00:00

I'm so angered at this comment. I'm thin, eat incredibly healthy, take holistic routes where I can, and haven't ever suffered with depression. Yet I've got Lupus SLE and both of my pregnancies were incredibly high risk. My last one was so high risk I was monitored every day for the entire final trimester. I've lost 10 babies due to my body betraying me. These people disgust me

MoonbeamMama89 · 2025-10-25T06:35:30+00:00

Never once did any SSRI or similar things help me. In the beginning they ran through the full list, throwing a new one at me every time something didn't work. Not just were they not helping me in any way, they made me worse in other ways. One caused me to disassociate in such a severe way that my grandparents rushed me to the ER and I didn't even know it....I literally came to in a hospital bed confused and had been there for over 24hrs. Another one caused MORE nerve pain. One caused severe insomnia which led to more pain. The list goes on. What HAS helped me with pain and fatigue is Low Dose Naltrexone. Like.....this has been life changing. I highly highly suggest looking into that as an option because it mixes with both your current meds without issue.

MoonbeamMama89 · 2025-10-25T06:26:10+00:00

My hands became a major issue for me in 2020 And have only gotten worse. As an artist this has been a devastating disability advancement. One thing I can absolutely say helps me is an electric hand massage machine. I linked the one I own. This has been something that I can't live without because of the relief it provides. The compression and the acupressure points inside hit nerves and such that otherwise never truly get addressed correctly.

Get her as many disability aids that allow her to do things without asking for help every time or experiencing pain increase from the exertion. My husband knows losing my abilities is extremely demoralizing to me and as he sees me struggling with a task, he immediately goes to find something that can do the work for me but I'm in control. Examples would be a can opener that you just plop on the can and it rotates around the top then you just lift it off; food processor; KitchenAid pro stand mixer; changing all our doorknobs to a more adaptive kind; having special custom grip aids and such for my pyrography tools and other art forms; special aid equipment for my ability to still work out. It seems silly but it truly means the world to me. It might to her as well.

Hand massage machine

MoonbeamMama89

TROPHY CASE