I did this AMA about 2 years ago and felt like it was a great way to spread awareness, so since May is Lupus Awareness Month - I thought it would be a good time to do it again!

Proof: https://postimg.cc/D4z1ChYJ

Comments: 120 • Responses: 48  • Date: 

Siliwinter17 karma

What do you eat for breakfast usually?

kindbar3420 karma

I don’t normally eat breakfast but if I do, I like sourdough toast or eggs. And coffee with almond milk. I like to keep it simple!

Firespy_11 karma

Can you explain more about the disease?

kindbar3420 karma

Sure! All 3 are autoimmune diseases, meaning that the body’s immune system mistakenly attacks itself. Lupus is an inflammatory disease where the immune system attacks its own tissues. Addison’s Disease is an adrenal condition where the body’s adrenal glands don’t produce enough of the hormone cortisol. And psoriasis is a skin disorder which causes skin cells to multiple 10x faster than normal, which results in red, scaly rashes on the skin.

Firespy_7 karma

Oh I see, what is the effect of your body producing insufficient cortisol?

kindbar3411 karma

Symptoms include things like extreme fatigue, hyperpigmentation of the skin, low blood pressure, nausea, muscle pain, low blood sugar and salt cravings. Most of these can be alleviated with proper medication!

pancreasss13 karma

I was tested for Addisons because I have T1 and an insatiable appetite for salt. Like to the point I eat bits of plain rock salt. Thankfully, it turns out I just really like salt.

kindbar349 karma

Haha! The salt cravings are very intense - before I was diagnosed, I was eating cup of noodles or top ramen every single day and didn’t really think much of it. Looking back at that, I know now it was because of Addison’s! But glad yours turned out to just be a love for salt.

pancreasss6 karma

The whole autoimmune conditions that tend to come in combos is what made my endo kind of go... uh, we are going to test you for Addisons. My partner always thought it was strange that when I was cooking I’d always put salt in my hand and eat it. And then put wayyyy too much salt on my portion.

It’s something I’ve always done, well before I was diagnosed with T1 diabetes. And I (still) will eat plain butter with salt like it’s candy.

I’m just glad my blood pressure is always on the low side and I’m on statins anyway 😂

kindbar3410 karma

I still get the salt cravings pretty intensely most of the time. Here’s my best salty snack: stack a salt and vinegar chip on top of a dill pickle slice and wrap in a piece of salami.

twothumbs3 karma

Oh god fuck yeah. That sounds amazing! I love salt too. What other combos u got

kindbar347 karma

I love top ramen. I like to cook the noodles and drain all the water. Add the seasoning pack, some butter, a bit of soy sauce and sesame oil. The best salty noodles.

OllyPolly3 karma

I have psoriasis, psoriatic arthritis, and autoimmune hepatitis. A lot of these are my symptoms as well. Mine are from a decompensating liver.

kindbar342 karma

Hi there! I also was diagnosed with psoriatic arthritis, but some doctors are unsure if it’s a correct diagnosis because of the symptom overlap with Lupus. I’m sorry you also have to deal with so much!

Firespy_2 karma

Can the other diseases be cured or just reduce the symptoms?

kindbar343 karma

None of these illnesses can be cured, only managed with medication and/or lifestyle changes

Firespy_2 karma

Last question, what is your worst experience?

kindbar342 karma

Just in general, or in relation to my illnesses?

Firespy_2 karma

Yes, related to your illnesses

kindbar3410 karma

I have had a lot of bad experiences related to them, so it’s hard to choose one. But what’s coming to mind right now is when I was diagnosed with Addison’s Disease. I was only around 13 years old and I called my dad from the nurses office to pick me up from school. He refused to pick me up because he thought I was faking sick, so I just sat in the nurses office all day because I could barely sit up or breathe until he finally picked me up. We went to the ER and I was transferred in an ambulance to a nearby children’s hospital where I stayed for 3 days to run tests until I was diagnosed. Addison’s Disease can be very dangerous when untreated. All was pretty scary, especially as a young teenager. Thank you for your questions!

bisonthryson2411 karma

What is one thing that you think everyone needs to know about lupus?

kindbar3415 karma

I think it’s important to know that Lupus doesn’t have a cure. And while there are many treatments out there to help with symptoms, most Lupus patients feel that it greatly impacts their daily life.

HorrificSausage9 karma

Are you happy? How do you respond to people with no illnesses who talk about people with illnesses with a lot of pity? How do you manage to live a happy life despite your illness, or is your illness irrelevant to your happiness?

kindbar3418 karma

I am happy! I think people with chronic illnesses don’t want pity, at least I don’t. I just want empathy and people to understand me better.

I think acceptance is very important to living a happy life with illness. There was a time where I would try everything under the sun to help alleviate my symptoms...nothing helped and I was in a dark place because of it. So I’ve just accepted that this is my life, and it looks different than other peoples, and that’s okay. That doesn’t mean I don’t hope more medical innovation and a cure one day, I just don’t spend my life and the energy I do have trying to change something that’s out of my control.

HorrificSausage6 karma

'people with chronic illnesses don’t want pity' This is so true. ' I just want empathy and people to understand me better.' I live with an illness too and this is what I want people to understand. However I only started getting sick a year ago so I'm still learning to cope. How did you start that acceptance process?

kindbar347 karma

I think acceptance is a daily journey. I don’t always get there. On some of my worst days, I feel angry and sad that this is my life, and I think that is okay too.

I think the times where I have felt the most down about my situation have been when I don’t feel like I can do something that “normal” people can. And I think a big part of accepting is knowing that there is no “normal”. Everyone is facing something, and comparing your life to someone else’s never helped anyone.

I think society has taught us that is is wrong and shameful to feel weak and broken. So in my experience, there is a lot of shame and weakness that is associated with living with illness. But I find that when I come to terms with my own weakness and brokenness, that there is healing. Not from my physical ailments, but from the shame and pity of it all. It’s a daily practice.

InfintyRishi7 karma

What do you do to manage all these conditions?

kindbar3412 karma

I take two prescription medications as well as try my best to exercise regularly and eat healthy because I do notice a big difference when I do. Lots of pain management and I see a therapist that specializes in chronic illness.

LeRatslayer6 karma

Do you have any tips for psoriasis? My dad (57) has it in pretty late stage and while some oils have helped, the disease still continues to progress. The only somewhat consistent remedy we found was vodka, but I don't need to tell you why that's a bad idea.

kindbar344 karma

The only thing that I have found to help in anyway is “descaling” the psoriasis by moisturizing. Personally, I found a lot of improvement using a heated hemp oil treatment (there is a great video about it on YouTube). However, my psoriasis isn’t too severe and is almost entirely on my scalp. I do wish I had something more helpful to give your dad some relief!

doc20016 karma

What were your symptoms for lupus, and how did you get your doctor to finally test you? From what I’ve read a lot of doctors wont listen until far down the road. Also, what is Addison’s disease? Hope you are well!

kindbar3410 karma

My symptoms for Lupus included a lot of swelling and pain in my joints (mostly my knees and fingers) and extreme fatigue. I had actually been diagnosed with Addison’s Disease several years prior. It’s very common to be diagnosed with multiple autoimmune diseases, so when I started having some issues that were clearly non Addison’s related, Lupus was one of the first things brought up. It took about 8 months from first bringing the issues to doctors until I received a diagnosis.

Addison’s is an adrenal condition where the adrenal glands don’t produce the hormone cortisol.

vladcat4 karma

Your glands also don’t make enough aldosterone, which is why you’re taking the fludrocortisone

kindbar341 karma

Yes, this is true

InLazlosBasement5 karma

I also have a host of autoimmune issues, including Addisons. I’m having a lot of trouble getting support or understanding from my family, these being chronic conditions that are “invisible” and often very difficult to diagnose.

Do you have any recommendations for books or resources that helped people around you to understand? Or did they always support you?

kindbar342 karma

First of all, I’m sorry you’re dealing with autoimmune issues and that you don’t feel supported or understood. I know firsthand that it’s a very hard place to be!

Have you heard of the spoon theory? Many people with chronic illness find it really helpful when explaining their illness to other people who might not understand or don’t know much about it. I would suggest looking it up and see if it resonates with you!

I would also encourage your family/friends to research your health issues a bit to get a better understanding of what you face. Sometimes it’s easy to brush someone off as being dramatic when you can’t see what’s wrong, so I think when it comes from a medical perspective, they might be able to understand better.

I also can’t recommend finding a therapist or counselor who specializes in chronic illness enough. Not only will they be able to offer you support themselves, but they can talk through methods of communicating that might help the people in your life understand you better.

flashmeterred5 karma

What do you think of trumps trumpeting of medication you need?

kindbar349 karma

I actually no longer take that specific medication because I developed an allergy to it, so while it didn’t affect me personally, it has definitely been upsetting to see many other Lupus patients struggling to find this medication.

I think that if there is evidence that the medication can help those with Covid, I would of course want them to also be able to have access to it, but at the same time, there needs to be something in place to ensure patients who are already taking this medication can get access to it.

I don’t think trump should be suggesting treatments to the public anyway, I think that’s the place of a doctor.

Blackhole-Cat4 karma

In this quarantine, are you considered a part of the risk group? how are you dealing with it?

kindbar346 karma

I am considered part of the at risk group. I luckily worked remotely before any of this happened, so I have been able to continue working from home. My husband has been doing grocery shopping and any other food essential errands so that I can reduce my risk! I think I’m dealing with it pretty well considering everything.

DiabloII4 karma

How did you get diagnosed with addison disease? And how is the diagnosis carried out?

kindbar344 karma

I went though an Adrenal crisis, which is something that can happen when Addison’s Disease is left untreated. I became very sick - my skin was incredibly dark, I was under 100 pounds but had been eating normally, I was very tired - falling asleep in class or taking long naps when home from school. One day I started having trouble breathing and chest pain. I went to the ER and was transferred to a children’s hospital where I stayed for 3 days and was diagnosed.

As far as how it’s carried out, I think you mean how it’s managed? I take two medications and see an endocrinologist every 4-6 months to make sure everything’s all good.

Mandylynn11093 karma

Hi! I hope you're doing well today. I've had a lot of issues since I was 22 (I'm 37 now) & I've been told I have fibromyalgia, chronic lymes, possible MS, but maybe 12 years ago my doctor at the time told me I had a positive for lupus, he said it was a small positive though and never looked into it again... So I guess my question is how did you know it was lupus?

kindbar342 karma

I had a positive ANA test as well as my symptoms aligned very closely with Lupus. Sun sensitivity, joint swelling and pain, fatigue. If a doctor told you that you tested positive, I would think they mean a positive ANA, so I think it could be worth revisiting!

I’m really sorry to hear that you’ve struggled with health problems too.

frigginamazin3 karma

Whick of the three diagnosises do you feel is affecting you the most?

I have psoriasis myself, and god, its tearing me up sometimes.

kindbar343 karma

Lupus is definitely the diagnosis that causes the most pain and affects me the most. The combination does make things complicated though.

Psoriasis is horrible. I’m very lucky mine is not very severe. I’m sorry you struggle with it too.

Norgeroff3 karma

What color is your toothbrush?

kindbar343 karma

Black!

BanditaIncognita3 karma

Everyone I know with an autoimmune disease had a traumatic childhood. It's as if the stress broke their immune systems and they start attacking themselves. I wonder if this is just my close circle or a wider phenomenon.

Just for my own peraonal curiosity, do you also fall into that demographic? You don't have to answer if you don't feel comfortable, of course.

kindbar345 karma

Someone actually mentioned this on my last AMA as well. I found it really interesting because I had never heard that before! I personally didn’t have anything particularly traumatic to me happen in my childhood.

Wes-Leyy3 karma

Hi. I also have psoriasis. I’ve had it since I was 9. When did you get it?

kindbar343 karma

I can’t really remember the official diagnosis, but I do remember having it as young as elementary school on my scalp.

ginkat1232 karma

I have psoriatic arthritis and fibromyalgia syndrome, wasn't diagnosed until I was over 40, but experienced the pain a skin breakouts since in my early 30s. How did you get the doctor to listen to you , do testing?

kindbar342 karma

My first diagnosis came early in life and was diagnosed due to a medical emergency as well as it’s one of the easier illnesses to diagnose. After that, I felt like my doctors listened because there was a high chance that I would develop another autoimmune disease. And I was very persistent when I knew something was off that wasn’t related to my first diagnosis.

ginkat1232 karma

I see, most of my issues were with my hands, so they either wrote it off as carpal tunnel, which I've had 3 surgeries for, or trying to get out of work. It was a work comp. advocate for the company that insisted I be tested. They still paid, because most of the damage was from working. A couple shattered bones. Good luck to you. I'm glad all I have is arthritis. Lupus is scary.

kindbar342 karma

It’s really frustrating to me to hear so many stories of people with autoimmune issues who had problems being diagnosed. I hope one day they will be able to develop better testing methods.

Exodus50002 karma

Do you have a boyfriend? How do you respond to Dr. House memes about it never being Lupus?

kindbar342 karma

I am married. I don’t find the memes offensive but I’ve never seen the show

Exodus50002 karma

I could not have been married at 25. I was way too immature for it.

kindbar342 karma

It definitely is a bit young - but I dated my husband for 8 years before we got married last year!

Exodus50001 karma

Oh my god, you've been dating since highschool? My highschool girlfriends were so... ill advised. What do you most look forward to after quarantine?

kindbar342 karma

Yes! Started dating when I was 16. Hmm..a lot of things to look forward to. I am excited to grocery shop normally, I love cooking and grocery shopping so it’s been a bit of a bummer for me. Also looking forward to going thrifting and seeing my parents.

Exodus50002 karma

No one loves grocery shopping :) What's your favorite meal to cook? When you go to thrift stores what sorta stuff do you look for? Mostly clothes?

kindbar342 karma

I love trying new recipes and recently made focaccia bread. Not exactly a meal, but I think it’s my new favorite thing to make. I love thrifting and mostly go for home decor items - I actually have a side hustle where I sell vintage treasures. Unique baskets are my favorite. But I do look for clothes as well and am in need of some summer clothes so am very excited to shop around when I can!

Exodus50002 karma

What did you end up doing with the focaccia bread? How'd you get in the basket biz? I need a unique basket for a hobby of mine. What are you looking forward to most about this summer?

kindbar345 karma

I don’t know if you’ve heard or seen focaccia bread art, but it’s basically when you use vegetables and herbs to create art on the top of the bread, so I tried that out. And just ate it by itself, I did make a panini which was very good.

I started thrifting a lot after I married my husband to decorate our home. Once I was finished decorating, I still wanted to thrift but didn’t have any need for anything, so decided to start selling it through Instagram! Right now, I don’t have a ton of inventory because of stores being closed.

My husband and I have been planning to rent a camper van in Washington state in August! Hoping we can continue to go as planned.

Ipride3622 karma

What do think about Dr. Gregory House musing “It’s never lupus.” ?

kindbar343 karma

Everyone always asks me this, lol. I’ve never seen the show so I don’t really get it. But it definitely is sometimes Lupus!

wordsmakethings2 karma

Hi! Thank you so much for sharing! Because you see health providers every 4-6 months, do you zoom out and reflect on how the process of managing your condition can be improved? Like do your providers talk with one another, or is it up to you to carry around a binder with all of your information, or do you use an app to keep track of things? Thank you!

kindbar342 karma

I find it rare that my providers collaborate together - although I think it would be beneficial. Honestly, I could do a way better job of keeping track of information. I have found it hard to find a system that works.

A binder is a great idea, but I usually don’t get copies of my lab results or medical records. I don’t know if everyone has had the same experience, but I’ve found it nearly impossible to obtain my own medical records. It’s extremely frustrating - they make it very difficult. Not sure why.

I would love to find an app that works well for tracking symptoms, treatments, etc.

Thank you for your question!

wordsmakethings1 karma

Thank you so much for your answer!

Not sure which country you're from, but that your providers don't talk is unfortunately what seems to be the norm: the patient is responsible for managing the process that can be hilariously complicated.

I'm really curious about how virtual care will change this. The pandemic has accelerated health care tech use years ahead of what it's been a few months ago and I'm curious about the access to information patients will demand (and hopefully get) as this continues to evolve.

A colleague (hemophilia patient) collaborated as a patient advisor on this cool app that has really empowered him to manage his condition better: https://www.hemophilia.ca/my-cbdr/.

I literally just Googled this, but I wonder if something like this might interest you for keeping track of stuff to look for patterns: http://flaredown.com/

kindbar342 karma

I’m from the US and do think it is the norm here, at least from my experience with several different doctors and others I have spoken with.

I also am curious to see how things will change! Not just in the health world, but in the workplace as well. I now work for myself remotely and have been for about a year now, but I previously worked for a research company and asked about working remotely for health reasons. I started getting pretty sick for a month and knew it would be helpful. They wouldn’t allow it. Now the whole company has been successfully working remotely for a month. I know several other people with chronic illness have had similar experiences. I hope that working remotely can become more widely accepted to help accommodate people with illnesses and disabilities.

Thank you for the app suggestions - I will definitely check those out!

[deleted]2 karma

[deleted]

kindbar342 karma

If you’re concerned, I would make an appointment with an endocrinologist and get tested. Addison’s can be extremely dangerous when untreated so it’s better to be proactive and cautious in my opinion. I had an adrenal crisis that ended me up in the hospital and was then diagnosed.

And I am so sorry that happened to you. That sounds really scary.

SirLoftyCunt2 karma

Have you been told by someone the way you go about your life is an inspiration to them? What do you think about someone telling you that? (Do you dislike it?)

kindbar342 karma

Hmm, this is a good and interesting question! I definitely have been told this by people before. It feels weird to say “yes, I am so inspirational”, because I don’t really think of myself that way. But I can acknowledge that I’ve dealt with a lot of adversity in my life and have pushed through it. So I wouldn’t say I dislike when people say that!

Its_just_jeff2 karma

Hey Fellow P Patient! How’s your Psoriasis today?

kindbar341 karma

It’s very mild at the moment! How about you?

Universa231 karma

Does it hurt?

kindbar341 karma

Yes, causes chronic pain

kquist861 karma

I listened to an interview with someone who had lupus who had a hard time filling her meds since the covid thing started. Since one of the early theories of treatment involved the same meds prescribed for lupus. Are you finding yourself having the same problem getting your medication?

kindbar341 karma

I don’t take that specific medication because I am allergic to it, so I personally haven’t had that issue but I have seen a lot of people in groups I am have that issue and it’s really upsetting to hear about! I know if I couldn’t get one of my medications, I would be in pretty bad shape.

lesmalheurs1 karma

What foods do you have to avoid? Did you ever try AIP diet? Did it help?

kindbar344 karma

I very briefly tried AIP. I tried it out for a week and was so sick to my stomach and nauseous that I couldn’t continue it. That was just my experience, I do think there is value in eliminating foods to see if you have any foods that trigger symptoms.

I personally try to stay away from gluten, dairy and sugar. I still eat them though, just in moderation.

ikhas0 karma

Do you have any problems with your stomach or gut?

kindbar341 karma

At times, I have struggled with nausea and vomiting but it’s not a super persistent issue

meekkkkuh0 karma

Have you ever heard of ketosis to assist with the inflammation and immune response?

kindbar341 karma

I have heard of ketosis, but have not read much research about its effect on inflammation or immune response.

Camusronaldo0 karma

Aight you must be pumped on prednisone or some other glucocorticoid for all three or you also get methotrextate and what not? Whats your regimen?

kindbar341 karma

I’m currently on 10 mg of prednisone and 0.2 mg of fludrocortisone. I tried methotrexate previously but it didn’t work for me!

Camusronaldo0 karma

Damn son. Hows your A1C?

kindbar341 karma

It’s all good as of now

Nuahxos_1-2 karma

I don’t know what that disease is. Is it related to wolves?

kindbar342 karma

Nope! I explained a bit about it in some of the other answers

Mercutio33333-5 karma

Why?

kindbar343 karma

Why what?