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Not to self promo or anything but I have lupus and a couple characters in my book have a (fictional - fantasy world) disease inspired by lupus. It’s called The Fever King. It’s a YA science fantasy and came out in March.
If anyone knows of any other books with characters with lupus I’d love to read them!
I started using this organic shampoo and conditioner! It’s pretty expensive, but I have noticed a difference in just the first 2 months of using it! I sent the link below! The bottles are a bit small for the price, but what I do is I use a small amount of shampoo and conditioner on my scalp and where I feel like I’m thinning most and then I’ll use my regular shampoo and conditioner to clean my hair! Hope this helps!
How do you feel when you drink caffeine?
Way before my diagnosis I struggled with fatigue but then someone introduced me to Yerba Mate, it's a tea that has a form of caffeine called Mateine. Just slightly structurally different than caffeine and it's easier on your nervous system. It's never given me a crash and I just go back to a normal state of being awake. It's helped mood too.
I would get the loose leaf tea and brew and drink it that way. The tea bags have always been really weak for me. You can get a big bag on Amazon. I've been drinking it for 7 years now and it's helped my fatigue so much, even with lupus. If it tastes bitter to you then drink it with a honey and green tea mixture.
https://www.amazon.com/dp/B00E3UI0SC/ref=cm_sw_r_apa_i_iX6LEbS069A2H
Also how is your vitamin intake? The most noticeable for me has been vitamin d and magnesium. Magnesium showed me the most difference.
I know it's really hard to exercise with lupus, I can't even try at the moment. But I plan to when my flare calms down and I'm hoping that will help the next flare intensity and fatigue too.
No. If you qualify for the study, you receive the test free (a 200 dollar value). If you deceive them, don't have a lupus diagnosis, you would have to pay it back.
This was the page I meant to link to: https://www.23andme.com/lupus/ rather than the enrollment page.
Genetic markers are important to understand in developing better tests and treatments for the disease. Plenty of people with Lupus already don't want to have kids because they're afraid they will pass it on. This gives us a better understanding of the signs and markers for that. Yes, in thirty years it would be cheaper, but the research is less meaningful. I'm 100% for improving and developing smarter research for a disease that runs in my family and that I have.
Get you some clothes that are have uv protection. Here's an example. This is a shirt I ordered for when I work in the yard. I love it and plan to get more. https://smile.amazon.com/dp/B0851CV9GM/ref=cm_sw_r_cp_apa_glt_fabc_CHXG10TSPD113BTZMRWQ?_encoding=UTF8&psc=1
I LOVE my compression socks. I have these. But I do have swelling more than aching.
I wonder if your blankets have anything to do with it. If I get in a bed with everything all tucked in my ankles revolt. I also have some pretty messed up feet so I have to sleep with my feet over the edge or over a pillow so my feet don't cramp. You might try giving a few pillows a go and seeing if you can reduce pressure points.
Get your sleeping schedule consistent and make sure you're getting enough. When your body tells you it's tired, listen.
I use this app, https://play.google.com/store/apps/details?id=com.urbandroid.sleep
Don't eat junk food. Buy a crock pot if you have to and cook as much as possible.
Essentially, live a healthy life. Most people don't. But we don't get the option not to. Your body will not tolerate mistreatment like a normal person.
It's not going to work 100% for everyone, but I went from three medications and regular flares, to one medication and only occasional flares of a lower severity.
A lot of us start with this disease when we are relatively young, and we still want to live like we are young. But once you're diagnosed, you're middle aged whether you like it or not. Or at least you have to behave that way.
If she's just been diagnosed the best advice is not lupus-specific, but relevant to anyone who's suffered life-changing news - be kind, understanding and patient, listen to her, try not to take it to heart if/when she gets angry or upset. I would imagine she needs to hear that it doesn't change anything between you two (provided you can honestly say that, of course).
Long term, there was a similar thread not long ago that's worth a read. I'm a man with lupus so there's a level of insight there with regards to supporting a girlfriend that I can't offer, myself.
Some bad news: depending on the severity of the disease, she may be prescribed multiple drugs, some of which have the capacity to make her feel rotten and/or affect her appearance. This is particularly true for steroid treatment and immunosuppressants such as mycophenolate and azathioprine. She may well be on some of these for life, barring a miracle, and that realisation can have a profound effect on a person early on. One of the major things that impact lupus patients is fatigue, and she might find she has to change her lifestyle to accomodate for this.
Some good news: getting diagnosed with lupus is more than half the battle won - people can spend years in misery not knowing what is causing their horrible symptoms. The day I was diagnosed I had a big grin for most of it because I knew I was finally going to get some treatment. The medication is generally very effective and fast-acting and although there can be well-documented side effects it's perfectly possible to live a normal life regardless. I for one came back from a severe case of lupus nephritis (kidney involvement) within a period of months and am now pretty much back to how I was before it kicked in. I take my medication and crack on with my life - it's a pain in the arse but it's not the end of the world!
I don't believe they have specifically been able to identify Lupus gene
http://www.lupus.org/answers/entry/is-lupus-hereditary
While there is suggestion that it can be inherited many people develop autoimmune diseases in which there is no one else in the family who has it.
I'm actually participating in a study currently on 23andme in which they are attempting to identify potential genes for Lupus. https://www.23andme.com/lupus/
So seeing a genetic counselor won't actually give you insight on if your husband will pass along Lupus... though I do recommend genetic counseling to know if you both have recessive traits that could be passed along if that is something you are very seriously concerned about.
I use the Tula sunscreen on my face, it's the only thing that doesn't break me out.
I wear a lot of UPF 50 rashguards under my regular tees to protect from the sun. It also helps wick away sweat. I get them from Amazon, Lefroi and Huge Sports are the brands I have the most of.
I have a couple of UPF hats I got on Amazon. This one works with a ponytail.
https://www.amazon.com/gp/product/B0875MLM2V/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
I have a couple of very lightweight anorak jackets that are great, they are cool but keep the sun off me. I couldn't find the exact ones I have, but I got one on Amazon and one at Target.
I have a long sleeve rashguard swim suit and even UPF leggings I wear with it for paddle boarding. Both from Amazon and affordable.
Finally, I have a great little cot tent that I take with me to the lake or anywhere we go outdoors, so I can always have a place to chill out of the sun and still look out at the lake etc.
Just FYI, there are reusable ones that are much better for sustainability and work just as well :)
Hot to Go Reusable Heat Packs - Buy 4 Get 4 Free! https://www.amazon.com/dp/B016OA5YK0/ref=cm_sw_r_cp_api_glc_fabc_o-p7FbD6ZFSQM
There’s a great book on Amazon. I got it for my sister shortly after she was diagnosed!
Check it out
The Lupus Diet Plan: Meal Plans & Recipes to Soothe Inflammation, Treat Flares, and Send Lupus into Remission https://www.amazon.com/dp/1939754143/ref=cm_sw_r_cp_api_i_NUPfCb7TRW6K8
Be careful, you can drive yourself crazy with this or cause development of a considerable case of healthcare anxiety.
I'd do temp daily if you like, weight weekly. There's an app called FibroMapp you can get. It was like $3? It lets you record where your pain is and what type of pain, and what intervention measures were taken and did they help. Generates PDF's for you and lets you customize entries.
https://play.google.com/store/apps/details?id=co.uk.FibroMapp&hl=en
I have no affiliation with this app, it just helped keep everything central for me.
I'm sorry you're suffering, I can only imagine how frustrating it must be. Have you considered seeing your OBGYN about the postpartum and asking about antidepressants? There's evidence that antidepressants can sometimes minimize physical pain: https://www.mayoclinic.org/pain-medications/art-20045647 At the very least, you may find some relief for the anxiety and depression, which could be exacerbating your joint pain.
Have you tried epsom salt baths? That's usually my go-to when I'm so achy I can hardly move. Also, stress can make Lupus so much worse and this is a very stressful time. Try to minimize your stress as much as you can (I know, I feel like that's such bullshit advice when it's given to me - who can escape to a deserted island and sip umbrella drinks in a hammock all day? *pshaw*), sleep whenever your baby sleeps, be gentle on yourself.
I've never tried a support group but it's worth a shot. Therapy can be tremendously helpful, not only to learn how to deal with the grief associated with a chronic illness but also to have a place to vent without wearing out your support system.
Good luck to you and stay strong. You can do this!
Ok, I came to my computer to give you some more info...here's that subreddit I mentioned, although that's pretty easy to find.
Also, CNET recently had a 3 month Audible Gold membership offer for under $6, which is a nice discount, and provides access to a lot of titles. Basically, you get one credit each month, and that credit gets you one audiobook to keep. Here's a link to the offer. I believe it is still valid, but I wouldn't wait too long if you're interested.
You might want to check at your local library. Mine started offering free access to Hoopla, which is a service that provides audiobooks, movies, tv shows, music...content depends on what a particular library signs up for. I think there are other similar services.
I love Hoopla, and there are apps for it that offer timers, bookmarks, and other user-friendly features. Same with Audible.
Ur in luck it’s on sale now!! G&T Headband Wig for Women Black Straight Synthetic Headband Wig Glueless Heat Resistant Natutal Looking for Daily Party Use (24 inch) https://www.amazon.com/dp/B08PJW2F9F/ref=cm_sw_r_cp_api_glt_fabc_S5KJ7GB907V4HHCB91WP?_encoding=UTF8&psc=1
There is an umbrella that is specifically designed to be windproof. However it is expensive and not UV.
One thing that I really recommend for sensitive skin is this:
https://www.amazon.com/Bioderma-28138-Parent-Atoderm-Shower-33-8/dp/B00ZY65OSI
It is incredibly gentle to use as an all over body and face wash.
This is my favorite one! It has an adjustable strap on the inside too, so I don’t have to use the chin strap if I don’t want to.
Sloggers Women's Wide Brim Braided Sun Hat with Wind Lanyard - Dark Brown - UPF 50+ Maximum Sun Protection, Style 442DB01 https://www.amazon.com/dp/B0031YQCTK/ref=cm_sw_r_cp_api_glt_fabc_RA62STXDJQRESJ58Y8BE?_encoding=UTF8&psc=1
Sunscreen and UV clothing are my #1 protection, but when I am walking around I know a hat isn't enough. I have this umbrella as my second line of defense. It helps some when I know I don't have another option for not being out in the sun. https://www.amazon.com/dp/B082TT73LZ?psc=1&ref=ppx_yo2_dt_b_product_details
Forgot to add anti fatigue mat. Have one at my sink and one at my stove (may add one to my bathroom sink area) and they make my feet very happy
Lupus Pain & Symptom Tracker: A 90-Day Guided Journal: Detailed Daily Pain Assessment Diary, Mood Tracker & Medication Log for Flare-ups and Chronic A https://www.amazon.com/dp/B0848RRB9V/ref=cm_sw_r_cp_apip_XUhFjZVbYNCO9
Two excellent books:
The Lupus Book - make sure it's the 6th edition
Stay away from books/websites where people 'cure' themselves by juicing 80 lbs of spinach a day or coating themselves in essential oils ;)
To be as clear as possible, I just searched on Amazon and here is a link to what you want:
The book does have some recipes in it, that's part of the content, because it talks about diet planning.
Have you tried an anti fatigue mat? I used to work in restaurants where I was on my feet all day and the areas they had these (in the server stations and host stand and kitchen) they helped a lot. Heres a link to one: https://www.amazon.com/dp/B01HFKUJEY/ref=cm_sw_r_cp_apa_i_ILXrFbXFT80YH
I know it's not necessarily what you asked for but I hope it helps a little bit.
What worked best for me was physical therapy putty. It was a complete life changer.
Makes complete sense - that's how it is for me! If you're able to do any sort of physical activity, I highly recommend getting something like this. When my muscles are super tight, I roll around on it and it helps a bit. It's not a magic bullet by any means, but it does provide at least a little bit of relief :)
I posted for OP but I wanna ask you to check these out, too. It's all I can wear now: https://www.amazon.com/Jstyle-Earrings-Rhinestone-Piercing-Retainers/dp/B08LMYH19V/ref=mp_s_a_1_3?crid=2G813NFRYVABG&keywords=plastic+earrings&qid=1671033904&sprefix=plastic+ea%2Caps%2C208&sr=8-3
Sometimes there's side effects of the medication, I know I had some issues with it when I first started. HCQ can be hard to start, but stopping taking it can be detrimental to her health. I will say that after a while, I started having less side effects and less issues with my Lupus in general. After my body seemed to get used to the medication, my lupus became a lot better. I went almost 20 years without a severe flare, the stress of the pandemic, lockdown, and PCSing as well as some major rainstorms caused my flare.
I got a Lupus Journal from Amazon, it literally says F*CK Lupus on the front and it's covered in butterflies. It's a 180 day journal, every day you track: appointments, pain level, how you're feeling, mood, energy level, mental clarity, pain & symptom details, Sleep (Hours and Quality), Stress Levels, weather, allergen levels, BAROMETRIC PRESSURE (Barometric Pressure is a HUGE part of how she's going to feel) exercise, details, food/drinks, medication/supplements, Notes and "I am grateful for..." is at the bottom. For notes I added things like "First snow of the season" and "(husband) came home" I'm a Sailor's wife.
https://www.amazon.com/dp/1990271634/ref=emc\_b\_5\_i
She might start to notice other patterns. Also, hilight the REALLY bad days. I'm going to put the details I had for my last bad flare just to have a good example:
11/4/20 - butterfly rash, dry mouth, depression, fatigue, bloating, headache, joint pain, joint stiffness, lupus flare (and some descriptions on how the rashes felt and my lack of appetite) I felt like that deflated girl from the 80's/90's anti-drug commercial.
At least for the dry skin scaling on my face and ears I started using this Cetaphil once a week and it has completely disappeared. Note if I use it more than once a week my skin gets super oily just a heads up but once a week seems to be perfect. Its even super dry where I live right now and usually during this time my face is super cracked and sore from the dry cold air but even my lips aren't chapped because of this stuff.
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I highly recommend at least trying it out it has been a life changer for me I've had that scale on my face for 15+ years and I definitely got some self esteem back when I looked in the mirror and it was finally gone.
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I recommend a soaking tub, obtainable zero g, in water essentially. It’s gravity that hurts. Haha… I use this in my shower tub. And I can suspend myself siting crossed legged and pivoted slightly. I got the large one, best $60 ever spent.
Wrist wraps!!! They are stiffer than the compression gloves and much easier to get on. Personally I find it really helps with the wrist part and by helping that my body is less aggravated and it doesnt intensify the pain in the fingers.
For journaling a sensitive key board that is quite small placed on a surface where the entire arm and hand is completly flat has worked best for me. Ive tried all the fancy ergonomic stuff but keep coming back to this, basically ensuring that my wrists move as little as possible while typing and are completly supported. Another item to try are certain help items for artritis specifically not just ergonomic ones https://www.amazon.ca/PenAgain-ErgoSof-Pen-Ehlers-Danlos-Arthritis/dp/B002OJ9CIG
Have you tried cold gel packs? When my joints are inflammed I find it more helpful to manage with cold than with heat
Yes this is the link for it 🥰 The Lupus Diet Plan: Meal Plans &... https://www.amazon.com/dp/1939754143?ref=ppx_pop_mob_ap_share i try to cook the kidney friendly ones when possible, since I have lupus nephritis
I got it off of Amazon The Lupus Diet Plan: Meal Plans &... https://www.amazon.com/dp/1939754143?ref=ppx_pop_mob_ap_share lmk if u want me to share some recipes for free tho cuz I think it’s not fair that it so hard to find something online sometimes 😭
I purchased this Clever Fox Medical Planner from Amazon. I wanted to have something to carry to appointments and keep up with the Saphnelo I started last week. For $35 this thing is awesome. It covers 90 days of detailed symptom tracking and planning. I checked out Etsy digital options to track on my phone, but this ended up being the best option for me. I hope you find what works for you!
Medical Medium Anthony William, the chronic illness expert, originator of the global celery juice movement, and host of the Medical Medium Podcast, is the #1 New York Times best-selling author of Brain Saver, Brain Saver Protocols, Cleanses & Recipes, Cleanse to Heal, Celery Juice, Liver Rescue, Thyroid Healing, Life-Changing Foods, and the revised and expanded Medical Medium. Anthony was born with the unique ability to converse with the Spirit of Compassion, who provides him with extraordinarily advanced healing medical information that’s far ahead of its time.
Um, no. Great big fucking no on that one.
>I have been trying to interpret my results before seeing my dr, just to get an idea if there is actually something there
Bad idea. You won't know what's going on until one or several doctors tell you. I'm sorry to say this, but they went to med school for 10+ years. Just freaking out over WebMD won't help you get better.
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>I found some steroids in my cabinet and started taking then hoping they will help with the inflammation.
Second bad idea. Steroids are NO JOKE. Their side effects are heavy and long-lasting, and they should be taken only when the benefits clearly outweight those risks. Which you don't know because, again, you're not a doctor. Prescribed meds should be taken only as prescribed, by the person who received the prescription, at the time it was prescribed and at the dosage it was prescribed. Period.
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For joint pain and inflammation, cold works well. (For muscle pain however, I find warmth works better.) I have a soft iced gel pad like this, which I freeze and apply on the swollen joint for 15 minutes every hour. If it's my wrist or knee, I use an elastic to secure it so I don't have to hold it. If it feels too cold, I layer a cold wet cloth between the ice pack and my skin. Other than that, I normally use ibuprofen and Tylenol as you already tried so...
We have a device similar to this nutri chopper.
https://www.amazon.com/Nutrichopper-Fresh-keeping-container-Multi-purpose-Stainless/dp/B07V1D8WVF
It’s a good tool for kids as well if you’re around any that like to help in the kitchen. Ours isn’t this brand but it’s super similar
I got a folding treadmill, for money and space reasons, and while I’m not using it as much as I’d like anymore cause I’m so exhausted recently, it is a great option that worked great for me when I first got it and wasn’t feeling so worn down.
I’m hoping to get back to my walking after work soon. I’d love to get that in in the mornings but I already wake up at 6 🥲
I'm a extremely pale and cannot tolerate much sun at all. I've found TIZO 3 Tinted Face Mineral SPF40 to be the best, hand down. It isn't greasy, it's very safe for sensitive skin, won't clog pores, and it works extremely well....better than many I've tried that are 80 or 100 spf. A little also goes a long way. It also works as a primer if you wear makeup.
I wear it daily and have used it at the beach and festivals and never burn with it. It doesn't sweat off much at all, meaning one morning application tends to last all day.
For the rest of your body use the sun guard rash shirts and other protective clothing. If you wear a smaller womens size sometimes girls large/xlarge fit and getting them can save a lot of money.
I also tend to carry a parasol or umbrella with me everywhere during the day for shade (you can get super cute ones or just use an umbrella....many protect against the sun and uv). I like that better than hats, but large hats are also an option. Seek out the shade whenever possible and remember if you're going to be by water you'll need even more protection.
And try to just avoid being outside during the day when possible. Embrace the vampire night life 🧛♀️ 🦇 lol
I realize this is an old thread, but maybe someone else will come across it like I just did, or maybe you never found what you needed... either way, my answer to wind are the vented golf umbrellas, and I purchased this one aprox 4 yrs ago, live in Las Vegas sun and use it all summer long on my wheelchair... its still in perfect condition and I highly recommend this REFLECTIVE and WINDPROOF umbrella for my Lupus 👍☂️
Sun Tek 68" UV Protection Wind Cheater Vented Canopy Umbrella https://smile.amazon.com/dp/B00I0X24HQ/ref=cm_sw_r_apan_i_C8BG2A387ZPRQV2ARWAX?_encoding=UTF8&psc=1
I too have a lengthy history of mental health. This book has helped me quite a bit (when I actually remember to use it!) and it’s frequently used by mental health professionals:
The Dialectical Behavior Therapy Skills Workbook: Practical DBT Exercises for Learning Mindfulness, Interpersonal Effectiveness, Emotion Regulation, and Distress Tolerance by Matthew McKay PhD (Author) https://www.amazon.com/dp/1684034582ref=cm_sw_em_r_mt_dp_90HAAR3QAF9EG30GY1G2
I switched back to the silicone band but got one that has holes in it so my skin isn’t constantly damp. I also prep with aquaphor. No issues since!.Amazon link because I’m terrible with descriptions.
Wide brimmed packable hat with UPF sun protection fabric and a string to fasten it under the chin in case of wind. Any regular fabric has a super low SPF, so ideally you want something with UPF if you’re sensitive to UV. Plus a wide brimmed hat helps protect the face too.
Random example: https://www.amazon.com/Coolibar-UPF-Womens-Beach-Hat/dp/B01F2F5CS2
That is exactly how I am and it’s so confusing!! I will be dripping with sweat but my feet and hands will be ice cold!!
I prefer to have my house cold and use lots of blankies because one minute I’m freezing then I’m sweating then I’m a little bit of both hahaha
I get skin rashes mostly on my arms but for dryness I find coconut oil to be the absolute savior. I put it all over my body as soon as I turn the shower off (like I don’t get out and dry off I first put on coconut oil) when I get out I pat dry with a towel my skin absorbs better and feels so soft. Then I use this thick collagen cream I absolutely love (link below) I still get dry quicker than most but I would say this has improved the dryness immensely.
Amazon Naturewell Collagen Intense moisturizer
So much to learn I swear everyday I find out more I didn’t know. It’s insane!
Hope this helps you like it helps me!
Np!
Bohemian style clothing might also be your style. Sundresses are very comfortable, and they come in all different kinds of styles, too: https://www.amazon.com/R-Vivimos-Womens-Sleeve-Cotton-Dresses/dp/B08DV8XKY2/ref=sr_1_11?crid=3QY2WQLE8UYTU&keywords=bohemian+dress+long+sleeve&qid=1649895346&sprefix=bohemian+dress+long+sleeve%2Caps%2C79&sr=8-11
Maybe you could look into an insulated travel case. I was on humira for a bit for RA and I received an insulated travel case for my injections from the company. If I was traveling by plane that's what I would use for my benlysta injections. I did take Benlysta on a trip with my husband to a cabin, we have a camping fridge so we used that to transport it in the car. Since you're flying and can't use a fridge I think an insulated travel case would work. Idk if this specific one would work, it's an insulated travel kit for insulin but it reminds me of my humira case. It has spots for ice packs and it looks like slots for injections as well.
ALLCAMP Insulin Cooler Travel Bag with 4 Ice Pack and Insulation Liner for Diabetic Organize Medication (Medium) https://www.amazon.com/dp/B07CVDV3T1/ref=cm_sw_r_apan_i_S3MT08V9A4MY0Y6Z4MJV
Have you reached out to your rheumatologist yet? If you can tolerate it prednisone might help soften the blow. My hands, ankles and feet can get really bad. I use compression socks and gloves. If you don't have any maybe you could look into those. I got mine on Amazon for a really good price. I know it doesn't fix everything but it helps me with relief. These are the ones I have:
https://www.amazon.com/dp/B07HFZHSXF/ref=cm_sw_r_apan_glt_i_SSQA8A7GCBEQVN2HF0ER?psc=1
https://www.amazon.com/dp/B07FFC361V/ref=cm_sw_r_apan_glt_i_TF59VC1PX6RQR5FBPWEM
Sunscreen with SPF 50+ with PA++++ should be sufficient. Most importantly is to remember to reapply!
I prefer Asian sunscreens since it’s lighter. Currently using this which is waterproof so I wouldn’t need to worry about sweating and isn’t sticky or greasy for me.
I use Xylimelts when I get this way...especially if I am wearing my mask for longer periods of time. Helps a lot!
My partner bought be microwaveable slippers after I started getting actual tissue damage because it got so bad in my feet, they're amazing and I pretty much live in them now. Thoroughly reccomend!
Straight Headband Wigs for Black... https://www.amazon.com/dp/B09HBW7177?ref=ppx_pop_mob_ap_share This is the one I bought but there are plenty of other options! You can even try hd lace front wings for a more natural look, remember to leave your edges out though! Here are some pics of me in some of my fav wigs including the Bob for reference, good luck queen I hope all is well 💕. https://share.icloud.com/photos/07fgqBt_k-XZJSxAwEgAwzcbQ
I've been using this supplement since the beginning of the year and my hair is feeling super thick again. It hasn't fallen out in clumps like last year, and I have had a flare this year.
https://www.amazon.com/dp/B07CWK93RY/ref=cm_sw_r_tw_dp_dl_T9J01RP3Z39SQ950GF50
That's what he got me - I think you can find them at walmart as well but looks like amazon is cheaper. I'm so sorry you're dealing with that! Might be a good idea to check with your doctor to see if adding it would be good or a bad idea.
Yes of course here’s a the wig link!! BOGSEA Headband Wigs for Black Women Black Straight Wig with Headband Long Synthetic Headband Wig Easy to Wear https://www.amazon.com/dp/B08LYHXJFG/ref=cm_sw_r_cp_apip_d2wgdTAtgWCUn
Here’s the socks. For some reason the link to the hand warmers isn’t working but they’re ones that have magnets so you can have one for each hand :)
SNOW DEER 2021 Upgraded Rechargeable Electric Heated Socks,7.4V 2200mAh Battery Powered Cold Weather Heat Socks for Men Women,Outdoor Riding Camping Hiking Motorcycle Skiing Warm Winter Socks https://www.amazon.com/dp/B07T613RBS/ref=cm_sw_r_cp_api_glt_fabc_KMYVGEEDM0X321N64S12?_encoding=UTF8&psc=1
I wear this crazy hat: visor hat
I have worn one like this for years, and only after Covid was it less of an oddity. But it’s amazing. You can feel the not sun shine right not on your face!
I don’t even use sunscreen anymore that stuff is garbage.
I agree with what Miquotegirl said, both about the tests and the close appointment time!
That being said, the number one thing is to be honest with your doctors. They should be doing their best to give you a correct diagnosis. You don't want to be misdiagnosed with SLE, the drugs are rather terrible.
If you're interested, here's a little bit of info on the tests they'd be considering while coming up with a diagnosis: https://www.mayoclinic.org/diseases-conditions/lupus/basics/tests-diagnosis/con-20019676
I’m in a similar situation rn…no one takes me seriously. Doctors pass me around like I’m a toy. I’ve accepted that doctors only care about money nowadays, we don’t matter. I’m sorry you’re going through this, I know this isn’t easy. For now just breathe and rest. Sleep for 12 hours if you have to. I find hot showers help my joint pain, at least for a bit, cold weather makes it worse so keep yourself as warm as possible. I also use Voltaren gel on all my joints, lidocaine patches, Tylenol, ibuprofen and curcumin which eases the pain for a bit. Harass the rheum until they take you seriously. Here’s a link for a good curcumin supplement, it’s pricy but of all the brand and formulations I’ve tried, this one has been the most helpful thus far: https://www.amazon.com/dp/B018GQJQHM/ref=cm_sw_r_cp_api_glt_fabc_ZGDEX12X7QHTSNTBNEAC?_encoding=UTF8&psc=1
You’ll get through this, hold on to any hope you can muster to find okay?
Aight, update time!
I got this one SHBC Insulin Pen Carrying Case Portable Medical Cooler Bag for Diabetes with Protective Ice Brick - Convenient to Changing Needles with Each Injection https://www.amazon.com/dp/B08JG3X3SB/ref=cm_sw_r_cp_api_glt_fabc_96EEBE746D768A8DBNW5?_encoding=UTF8&psc=1 and can easily fit 2 Benlysta pens plus add another ice pack on top (though it’s so well built you may not need it).
When my next delivery arrives, I’ll let you all know if I can actually fit more. My theory is all the extra space on the top for bandages and stuff afford more room for auto-injectors and an ice pack.
I’ll also update with how well it kept temp in November.
Small cooler with dry ice maybe? They sell small dry ice packs on Amazon, so you can cut it into the shape you need. That way, it’s not too much or too little. Though I will say that when I drove 16 hours, I just put all my ice packs in a cooler and checked the temperature every so often and it was fine. I made two stops and put them in the fridge while I kept my ice packs in the freezer for the night. I also have like 15 ice packs for pain.
Packit makes a small freezable snack bag that might work. Next time I travel, that’s what I plan on using. Packit Snack Bag
Compression gloves and ice packs
I have no advice for the typing, unfortunately, but if writing is a problem, Amazon sells these big, weighted pens that help a lot. They’re more targeted for people who’s hands shake a lot, but I found it helps my arthritis.
u/enaldicode : That is exactly what I plan on with my patients. Just cut it in half. It will have a sour taste, but just take it with juice or milk. Here is my favorite pill cutter btw: https://www.amazon.com/gp/product/B00JMHZ5BG/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
It is pricey, but very sturdy and can cut the smallest tablets easily and quickly
Dr T
I love thick, fuzzy socks. The crazier the better, cause, gotta laugh sometimes, right?
When they are hot and/or swollen, I have these slippers that are basically ice packs in the shape of a sock and I LOVE them (example here).
I also find very comfortable, breathable shoes very important.
Also I found shampoos with tea tree oil help. This is what I currently use in this lasts me over a year. https://smile.amazon.com/dp/B001E112EW/ref=cm_sw_r_apan_glt_fabc_24W6BGP9EY57VMV4QGM2?_encoding=UTF8&psc=1
This one. Worth every penny. I used to make lemon bars even before I had lupus it was a pain. I get so much more juice out of each fruit now and it is way easier and now tolerable.
Chef'n FreshForce Citrus Juicer (Lime) https://www.amazon.com/dp/B002XOG4B0/ref=cm_sw_r_cp_apip_IynRFdTFLY5T9
I got these for my office and they’ve been really helpful. Octo Lights Fluorescent Light Covers for Classroom Office - Eliminate Harsh Glare Causing Eyestrain and Headaches. Office & Classroom Decorations - Flower 006 https://smile.amazon.com/dp/B01MG9A1MJ/ref=cm_sw_r_cp_api_glt_fabc_YRH2HNZ31C5XHFJGGWXR?_encoding=UTF8&psc=1
I take these: https://www.amazon.com/NOW-Super-Enzymes-180-Capsules/dp/B0013OXKHC/ref=sr_1_4?dchild=1&keywords=now+digestive+enzymes&qid=1631312244&sr=8-4 make sure to run it by your doctor first.
My vitamin D was 9 and my doctor put me on this DaVinci Vitamin D3 5,000 IUs My vitamin D is now in the 50s. Vitamin D is really important in the fight against COVID so be sure to be consistent no matter which route you take.
I have some baleaf UPF pants from Amazon I really like. They are loose and flowy so are breathable.
I actually get my cooling patches from Daiso - but these are the type of cooling patches I use (haven’t actually tried the brand). They don’t need to kept in the freezer at all and stash well in the car, purse, etc. between my mom and I there must be a good 10-15 boxes stashed between cars, purses, travel bags, desks, in the actual medical cabinet, etc.
I’m glad skillshare will probably be a good fit for your mom. Lupus robs so much from us the any sense of normalcy is a huge win.
😁 Yup, at least when it comes to this type of thing! You're welcome, hope this trick/product works well for you! If you need some options, I know one brand that I've used has been posted already; it's good for heavy drainage. The ones I cut to size are these.
I bought a different brand, but these seem to be the same thing: https://www.amazon.com/All-Health-Advanced-Healing-Dressing/dp/B07D1C7RFJ/ref=sr_1_9?dchild=1&keywords=hydrocolloid+bandages&qid=1616972407&sr=8-9
I just ordered this for fishing. Will test it next weekend when we go out. Hopefully this allows to to still go out and fish. I'm such an outdoor person and before diagnosed last summer I struggled but still went out. Now I want to try to find ways to enjoy the activities I love but always take care of myself https://www.amazon.com/dp/B082VPB1X2/ref=cm_sw_r_cp_apa_fabc_AN08BC998DWPZDJ7JTDP
rubbing fractionated coconut oil on ur scalp and through the ends of ur hair will hopefully help with the dandruff, and help keep ur hair moisturized which will help prevent split ends which makes hair loss a lot worse. do u have a shampoo and conditioner combo that’s good for it? if not i can ask my sister the kind she found worked well for her lupus related hair loss. also only shampooing the roots of ur hair, and only conditioning the shaft and ends will help ur hair too. i’m really sorry ur going through this, i remember how hard it was on my sisters when it began for them:( u can use something like this to fill in bald/sparse spots, it’s a game changer. also flipping ur head upside down while u rub the fractionated coconut oil in and massage ur scalp stimulates blood flow which can potentially help with the one on top of ur head. thin hair is nothing to be ashamed about, but it’s completely understandable to dislike having it, if it bothers u enough u could look into wigs, if u decide u want to try them u can send me a message and i can help u find good quality lower priced ones and give u tips and advice for them, pretty cool to be able to switch between any hairstyles u want :3 i hope ur having a good health night, i hope something in this can help<3
I use these:
Carhartt Women's Quilts Insulated Breathable Glove with Waterproof Wicking Insert https://www.amazon.com/dp/B06XDQFCDY/ref=cm_sw_r_cp_api_glc_fabc_ddo7FbJN7WQYJ?psc=1
I really like them because I have a farm in the north and these keep my hands nice and toasty doing my farm chores when it’s below freezing out, even if I’m out for a few hours!
This might be niche but if she likes to bake or cook with cirrus (or make margaritas) this has been a lifesaver for my hands
Chef'n FreshForce Citrus Juicer... https://www.amazon.com/dp/B002XOG4B0?ref=ppx_pop_mob_ap_share
If she does most of the cooking or cleaning ... gift cards to restaurants, or a cleaning service.
This is a horrible example in terms of reviews so don’t buy it. But maybe a crafty friend could help out or you could find a better one? It’s essentially just a core warming garment
Unisex Warm Soft Cashmere Waist Warmer Kidney Binder Supports Stretchy Thermal Waistband Stomach Warming Protector Wrap Back Brace Band https://www.amazon.com/dp/B0761KT3RQ/ref=cm_sw_r_cp_api_fabc_GQyVFbAY8PX19?_encoding=UTF8&psc=1
Amazon has a really nice rechargeable hand warmer, if it’s not against this subs rules I’ll find the link and post it. My boyfriend plays hockey so it’s a MUST to have when I go to his games. Also, my rheumatologist put my on a very low dose every other day of Procardia (a bp medication). I only take it once the weather starts to turn cold and it seems to help. It does make the blood pool in my legs more so then I have to wear compression socks lol. Never ending. Hope this helps and hugs! <3
Edit: here’s the link if anyone’s interested!
KARECEL Rechargeable Hand Warmers, Electric Hand Warmer 5200mAh Powerbank Reusable Handwarmers, Portable USB Hand Warmer Heater Battery Pocket Warmer, https://www.amazon.com/dp/B07FLN8823/ref=cm_sw_r_cp_apip_jXbX5Xg9wG7KC
For me its a necessity. I tend to forget when I take a dose so I have one with AM/PM sections and the days are all separate containers so I can stick it in my pocket or my bag for each day just in case. This is the one I use:
https://www.amazon.com/dp/B07PYQVLYS/ref=cm_sw_r_cp_apa_i_tdSOFbZPAZ8E1?_encoding=UTF8&psc=1
Anything cozy! If she has Raynaud's: Northface tech gloves, super warm socks. I also love my sunhat: (all people with lupus are sun-sensitive) https://www.amazon.com/gp/product/B07BPLXSDK/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
I’m pretty photosensitive - one of my best finds was a (super cute) one piece bathing suit on amazon .
I also try and do the beach in the early morning or late afternoon, and have a rest midday when the sun is strongest. I also use neutrogena 100 spf - it’s not greasy and they have it in spray or squeeze form.
My ENT said I probably had some allergy, but we never tried to figure out what I was allergic to.
After the surgery, he put me on a nasal spray that I used daily. The prescription expired and I looked at what’s in the spray and it turns out it’s basically a combination of Flonase and Claritin. So I have been ordering those from Amazon and taking those daily.
Maybe if you do the same, it might be good for you. I’m not a doctor, so it’s only a suggestion. The two are over the counter, and either I’m used to them or they have no noticeable side effects.
The claritin https://www.amazon.com/gp/product/B074F18H5N/ref=ppx_yo_dt_b_asin_title_o03_s00?ie=UTF8&psc=1
The Flonase https://www.amazon.com/gp/product/B01H40O42I/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
It’s basically $35 US for 6 months supply.
Regards,
Sticky notes! Use them. When I don't have to remember a long term or short term to-do list, then I can focus on not losing track of the current conversation I'm engaged in... just don't overwhelm yourself with 50 different notes, keep it condensed.
Also, I use a calendar to jot down what I actually do each day....I know it sounds lame BUT then at the end of the week I try to recall on my own what I did each day and I can check myself....it's like my own memory exercise =)
Here is the calendar I have used for the last 7ish years: https://smile.amazon.com/dp/B089P2947C/ref=cm_sw_r_cp_apa_fab_4CrGFbCBWEEMD
So the same thing was happening to me and my dermatologist suggested the same thing! However, my mom’s best friend lost all of her hair during her fight with breast cancer and what she started to use to grow her hair back was Botanical Green Care! It’s pretty pricey tbh, but it does work! My hair used to be thick, long, wouldn’t stop growing actually! Literally the only thing I liked about myself, and when my hair started to thin and fall out I was really upset! My mom bought me the shampoo and conditioner just to try and by the end of the month, my hair was starting to get thick again and growing! My hair had stopped growing for a while, so I became a believer after that! Below is the link to the shampoo, the conditioner I use is the lavender and cedar wood (hair thickening conditioner)! Again, it’s pricey and the bottles aren’t that big, but it is all natural, organic, and it really does work!
I took this when I cut my hair off and hated it. It grew SO fast! Just be careful to read all of the ingredients. I haven’t taken it since I’ve had lupus but it does have vitamin c and zinc in it!!
HairAnew (Unique Hair Growth... https://www.amazon.com/dp/B00I65AGHI?ref=ppx_pop_mob_ap_share[hair Anew](https://www.amazon.com/dp/B00I65AGHI?ref=ppx_pop_mob_ap_share)
This would happen to me randomly for a few years, lasting for a a few days each time. Then a couple summers ago it happened and my eye stayed red, after a month I went to the ophthalmologist. He said it was not uncommon for people with autoimmune diseases and chronic inflammation. He told me to get OTC drops like this:
https://www.amazon.com/dp/B00005V9CG/ref=cm_sw_r_cp_apa_i_EX5DFbY03S5DR
He said to use them and keep my eyes closed for 10 minutes and use a thermal heated eye mask. This made the redness go away. Now I use them as needed if I notice my eye (or eyes) starting to get a little red, or if they feel dry at all.
Thermal eye mask: https://www.amazon.com/dp/B004385RPS/ref=cm_sw_r_cp_apa_i_A05DFbPXSF0MK
There are different brands for the drops, what you want to look for is the active ingredient of carboxymethylcellulose. The drops he originally told me to use are 1%, I've also bought the 0.5٪ and they help as well.
Hope this helps you!
Hello, please look up the Medical Medium his name is Anthony Williams. Follow him on Facebook and Instagram you won’t regret it. I love him because you can tell he really cares and is not all about money. I am not affiliated with him at all just want to pass this on because I feel every one should have this Info especially people suffering. He is not trying to sell you anything. He does promote his book with info but it is very cheap like $16. You can take out at the library for free. He has a lot of information about causes of these symptoms and diagnosis and what can help. He talks a lot about auto immune diseases such as Lupus and so many chronic illnesses. I just purchased his new book Cleanse to Heal, and it is amazing. I have IBS and chronic heartburn and his information has helped me so much. It’s not medicine it’s learning about what the causes of the symptoms and what food to avoid and also what foods and supplements to help cleanse.
https://www.amazon.com/Medical-Medium-Cleanse-Heal-Depression/dp/1401958451
So sorry you’re dealing with this too! It’s a very real thing, definitely not in your head at all. (Simplified explanation from my rheumatologist: UV radiation from the sun stimulates the immune system, which is why you feel so much worse)
My mom is an organic chemist and looked extensively into sunscreens for me. Most block UVA or UVB wavelengths, but not both. I use Zinc based sunscreens because they block both types, and I definitely notice a difference in how I feel after being in the sun! For my face I’ve been using this, maybe that would help you as well (:
I also treat my clothes with Sun Guard which provides SPF 30 protection without buying expensive clothes. Coolibar has good protective clothing, as does Solbari.
Best of luck and I hope you feel better!!
also a 21 F i remember the first time i experiences hair loss, i was torn to pieces. i had to make some changes.. i prioritized my health immensely i stopped using conditioner bc my hair was just too weak. i switched to natural shampoo and then when i got out of the shower i used this product: Hask Placenta Super Strength Leave-in Conditioning Hair Treatment Pump, 5 Oz https://www.amazon.com/dp/B004TSMN7M/ref=cm_sw_r_cp_api_i_OlmeFb7R5KTM7
it’s hard, i’m still recovering from my hair loss but it’s slowly coming back. i’m really sorry you are going through this. remember this: hair, it comes and goes it’s quite unpredictable. but it’s also a sign of health. if your body is sick your hair is sick too. please prioritize your health right now, maybe the hair product will help, maybe it won’t. don’t beat yourself over it. if you ever need anything emotional support feel free to message me.
Ugh I'm sorry :( Your flare is even longer than mine! That sounds like it really sucks and I wish I could help. I recently bought an awesome sunhat that doesn't make me look stupid (I think?) and has this great little draw string and adjustable skull-size. It makes going in the sun for short bouts actually possible again! This is the one I got --> https://www.amazon.com/gp/product/B07BPLXSDK/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
If you don't want to click the link, it's called: "Women's wide brim sun hat with wind lanyard UPF summer straw sun hat" by Furtalk on Amazon.
Anyway, hang in there. My flare is subsiding after 6 months and yours will too xx
Found it! Apparently she actually ordered it online, but it's called Medline Remedy with Olivamine Skin Repair Cream. The people of Amazon agree with me that it's delightful... nearly 5 stars. :)
My Reynaud's isn't as severe as yours, but I like those little handwarmer packets for when I know I'm going to be doing something that will cause cold hands (here's one type: https://www.amazon.com/HotHands-Hand-Warmer-Value-Pack/dp/B0749NTTZN )
Just remember to activate them about 15 minutes before you go to the grocery store (or wherever) so they will be nice and warm when you arrive.
When I'm doing something in the kitchen that makes my hands cold, like chopping veggies fresh out of the refrigerator or prepping raw meat, I keep a small stream of warm water running out of the faucet so I can warm up my hands every few seconds. For me the temperature changes back and forth are a bit painful, but nothing compared to the pain I get from having cold hands for an extended period of time.
I also keep fingerless wool gloves at my office to use when typing.
This is the best resource I've found: The Lupus Encyclopedia, written by a rheumatologist and published by Johns Hopskins press. You can look up individual symptoms, tests, all sorts of things. It's nice to have all the info in one place rather than having to search the internet until you find reputable sources of info: https://www.amazon.com/Lupus-Encyclopedia-Comprehensive-Patients-Families/dp/1421409844/ref=asc_df_1421409844/?tag=hyprod-20&linkCode=df0&hvadid=312021251979&hvpos=1o1&hvnetw=g&hvrand=5657493647727399964&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9029598&hvtargid=pla-450966499916&psc=1