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51 Comments

jovellee Praying for your recovery

Dec 30Reply

lovelylupuslady @jovellee thank you so much 💖💖💖

Dec 30Reply

samm9114 Hope you get to feeling better!!!

Dec 30Reply

lovelylupuslady @samm9114 thank you very much 💖

Dec 30Reply

girlcandy Prayers for you and many blessings come your way

Jan 04Reply

cosmicdeals716 Hope you are feeling better soon.

Jan 08Reply

dreamgirl68 @lovelylupuslady oh, feel better 💛💜💚

Jan 10Reply

tishlebeute Darling you are in my prayers.

Feb 05Reply

bluidvll I feel for you, I am new to Posh but old hat to lupus, was diagnosed like 13 years ago. Check out a book called The New Arthritis Breakthrough by Dr. Henry Scammel it tells the story of the antibiotic therapy treatment I and a few of my friends have done and we have all been in remission for years now. Prior to that I swore I would be in a wheelchair. Check it out they have a website too. The road back .org.💜💜💜

Feb 08Reply

michaeljmeyers @lovelylupuslady prayers you feel better soon. I have fibromyalgia. I can totally relate. God bless.

Feb 09Reply

hopesparkles ✨💖 Hi! I have 5 disabilities including 11 herniated discs where one disc is torn and there's Radiculopathy into all my limbs, Fibromyalgia, Reactive Airway Disease just to name a few in addition to having Shingles and a Steroid Crisis. I haven't worked nor driven since 2008. I can't have children and time is running out since I'm 41. 🙆 So, I can completely empathize with you. My hubby moved to FL from MD for work on 11/12/13 and I only get a 3-7 day visit every 4-8 weeks. We thought we would have a lot of help caring for me but it's only my dad and my neighbor/friend who helps out. Which is so sad since my hubby is one of 6 where 3 are married and he has tons of cousins, but no one reaches out unless it's their child's birthday. I don't go anymore. There are days I don't eat because I can't get to the kitchen much less put myself through pain to go to a birthday party. I'm cooped up in this house and the one thing that makes me feel connected, that helps take my mind off of my problems and distracts me from the agony is Poshing. So enough about me, I'm really sorry to read that you have Lupus. Back in 1999 they thought I had it too, but diagnosed me with FMS which has flares too. Which I'm currently in as well. How long do yours last? When were you diagnosed? Do you have any other medical issues that complicates things? Were you able to start a family prior to getting this? I know I've thrown a lot of questions at you and it's only because I'm concerned. I also want you to know that there are others like you out here. But, please take your time getting back to me and only when you feel up to it. 🙏 You are in my prayers! Take care, Christa 💖✨

Feb 12Reply

lovelylupuslady @hopesparkles I had two surgeries for endometriosis, I had bilateral Iritis but it's been in remission for a long time. I developed SLE in 2008, I've been DX by two specialist with SLE. I was DX as UCTD originally. I have developed neuropathy the past 2 years but it's nit DX yet. I have the symptoms of small fiber neuropathy but I have t visited a neuro yet. I have tingling in my hands and feet and I've lost my sensations. I burn myself and cut myself but I cannot feel it. My doctor said I may have fibro. I could not have children. I have disc issues but not as severe as you. I hope you feel better soon. I live alone and I have a temporary job at a college.

Feb 12Reply

cinnyrella Hope you feel better soon

Feb 14Reply

theprissytomboy Hope that you feel better lady bug!! ☺️☺️

Feb 16Reply

mcmosmom Praying for you recovery to be quick and as pain free as possible

Feb 22Reply

kmariec Hey lovely lady! I hope you are doing & feeling better. Praying for you dear gorgeous woman. 🙏😊🎀💖

Feb 25Reply

123eloise Sending you my love and prayers 💖 Be strong ⭐️⭐️⭐️

Mar 08Reply

redtozjen @lovelylupuslady - Bless your heart.

Mar 15Reply

wenrella Hi GF, how's everything?

Mar 25Reply

lovelylupuslady @wenrella I'm doing better! I guess my hands were swollen all winter Bc now my ring is trying to fall off! It's 75 degrees today yeah! How are you?💖💖💖

Mar 25Reply

wenrella Hay, I'll write everything on FB, it's more private

Mar 25Reply

bluidvll I definitely feel your pain most days and the best thing I ever did for my lupus was controversial antibiotic therapy, if interested there is a website that talks about it and a book as well with other testimonies. No more toxic drugs no longer do I feel as though I am destined to be in a wheelchair. That way I don't have to store my size 2 while I am in my size 10s and vice versa. Lmk I will tell ya the info, if not interested that's OK too.😀

Mar 28Reply

lovelylupuslady @bluidvll I have read about the antibiotic treatment. I wonder if there are any doctors close to me. I'm in cape Girardeau mo but originally from close to St. Louis, MO.

Mar 28Reply

lovelylupuslady @bluidvll I gained weight when I was taken off tramadol

Mar 28Reply

bluidvll I live in Des Moines and I am fortunate that my little sister lives in a small town in northwest Iowa called Ida Grove, Iowa where there is a retired Dr who still treats his rheumatoid patients because he has them come from all over the world to see him. I do go up and down in my weight and vitamin D every year. I had another friend do the same treatment from the same Dr as well as my sister they both had rhematoid arthritis and sister also has fibromyalgia. It has helped all three of us,

Mar 28Reply

lovelylupuslady @bluidvll I will look I to this summer thank you Janet. This semester is almost over :)

Mar 28Reply

bluidvll I have another sister with Lupus that is still choosing to take all the narcotics and toxic drugs she started out with rhematoid and hers has now turned into lupus as well. I have had Lupus for 14 yrs now and pretty much been in a remissive state. The book is The New Arthritis Breakthrough by Henry Scammel and the website is theroadback.org check it out.

Mar 28Reply

lovelylupuslady @bluidvll thank you Janet 💖

Mar 28Reply

bluidvll Just tag me if I can answer anything at all for you I hate seeing anyone struggle with this debilitating disease and I firmly believe if the disease was as easy to put in remission for years by putting them on antibiotics, the pharmacutical companies, and docs would not make as much money on the "latest and greatest" arthritis drug. I am still having to have my eyes checked every 6 months just because of being on Plaquenil for so long. whats that tell ya.

Mar 28Reply

lovelylupuslady @bluidvll I sent an email requesting a doctor in my area. Hopefully, a person will email me back.

Mar 28Reply

bluidvll No problem anything I can do to help I will. I hate to see what we are put thru when all we want is a cure.

Mar 28Reply

lovelylupuslady @bluidvll thank you Janet :)

Mar 28Reply

bluidvll Let me know if you dont hear I will go to my Dr and see if he can get me one for you. Dr Jon Sinnott in Ida Grove Iowa and if you cant go anywhere else there is a cheap bed and breakfast in the town that I stay at cuz you would be there for a full week. You do two IV a day for 5 days then go home on antibiotics.

Mar 28Reply

bluidvll NP keep your head up and a smile on your face!

Mar 28Reply

lovelylupuslady @bluidvll thank you Janet you are wonderful 💖💖💖💖

Mar 28Reply

lovelylupuslady @bluidvll Janet how much does the treatment cost? I am making 10 K less now than I did when I was a high school teacher.

Mar 29Reply

bluidvll I honestly don't know my insurance covered it 100% because I think they code it as a blood infection. Anyone with a rheumatic condition has mycoplasma infection in the blood.

Mar 29Reply

bluidvll The therapy has been so successful that insurance never used to cover it but now most insurance covers the treatment. Did you get a response as to a dr in your area?

Mar 29Reply

lovelylupuslady @bluidvll Hi Janet no one has emailed me but it's the weekend. I have insurance though I do have a deductible.

Mar 29Reply

lovelylupuslady @bluidvll I've had elevated CH 50 since 2008. It's a blood complement that indicates infection.

Mar 29Reply

bluidvll Really they have made leaps and bounds with this treatment the only real downside is if you should ever need antibiotics for anything else they may not be effective due to daily antibiotic use cause you will be on daily antibiotics after the week of IV antibiotics.

Mar 29Reply

bluidvll Keep me posted I would love to hear what you find out. Keep in mind old school drs may not agree with it but I found a great family dr who knew all about mycoplasma infection and supported my decision.

Mar 29Reply

lovelylupuslady @bluidvll the most common infection I get is a sinus infection. I would take the chance to be better.

Mar 29Reply

bluidvll I was feeling like you are now and my mother, who is a RN nurse, said she seen me needing a wheelchair in 6 months. I was willing to have col, flu or anything else too over what I was going thru in agony all the time.

Mar 29Reply

lovelylupuslady @bluidvll I am so fatigued I wish I had a wheel chair but I can walk :)

Mar 29Reply

bluidvll Keep your spirits up and I hope you get someone to contact you about a Dr. Who is close to you that you can try the treatment. Keep in mind most people go thru hell the first week or two because you are getting a massive dose of antibiotic and it basically pisses off your infection and symptoms can get worse at first. I will keep praying for you.😀💜

Mar 29Reply

lovelylupuslady @bluidvll thank you so much Janet

Mar 30Reply

calyjo From one Lupus patient to another I pray you're doing well now. I've had this disease for many years and completely understand the misery and pain it causes. If you ever need someone to talk to I'm here. @lovelylupuslady

Apr 02Reply

lovelylupuslady @calyjo Hi Candace I'm doing better since spring arrived. I hope you are well.

Apr 02Reply

calyjo @lovelylupuslady, I'm well right now. Winter is by far the worst, love spring and just have to be careful in summer. Glad you're doing good!!👍

Apr 02Reply

abstractdreams Sending prayers & gentle ((hugs)).💕

Apr 28Reply