I have been living with autoimmune disease since I was 13 years old.

Proof: https://imgur.com/a/kgtaK7c

EDIT: Thank you for all of your comments. I will get to replying some more of these today. For those leaving comments asking if I’ve tried xyz and that it’s some miracle cure, I just want to specify that the Illnesses I have cannot be cured, but can be managed. Each person is unique in what techniques (natural and pharmaceutical) can help in managing their symptoms and disease activity. What worked for your friend might not work for me, but it also might help me too! Thanks for the suggestions and I’m definitely keeping everything in mind to try. I’m currently doing really well with a combination of lifestyle changes, natural remedies and treatments prescribed by doctors. Really appreciate all of the comments with your shared experiences and what works for you. Chronic illness is a lot of trial and error, so I hope all these suggestions may bring some people new ways to help treat what they go through.

Comments: 1725 • Responses: 107  • Date: 

GeneralInk933 karma

You’re a tough cookie, you know this right?

kindbar34595 karma

Thank you! Sometimes its hard to acknowledge this to myself, especially when having a body that is turning against itself makes me feel very weak at times, so hearing this from another person is really encouraging.

Noobytoe153 karma

Hey kind, Just wanna let You know I’m a 26 male who suffers from the safe auto immune deficiencies. You’re not alone and if you ever need to vent or talk hit me up:)

kindbar3474 karma

thank you!

aGeckoInTheGarage15 karma

I'm late to this ama but it holds a special place in my heart because my mother was diagnosed with lupus 2 weeks after becoming pregnant with me, doctor said the pregnancy triggered it. Her aunt June was one of the first reported cases in NY back in the 30s/40s (my dates may be totally wrong) growing up she was constantly battling problems lots of hospitalizations. And me being a young boy and her a single mother I had to grow up extremely fast. She's now gotten to the point she's given up on treatments and turned into a functioning opiate and benzo user and I've cut most of my ties and moved away because I couldn't watch her continue to kill herself. Lupus especially becomes hard to handle over the years. Please if you ever start feeling hopeless seek help. Talk to someone, anyone. Hell send me a PM. Just please don't try to fight it alone. I've seen first hand how it can destroy lives without ever being a symptom caused by lupus.

kindbar345 karma

Thanks so much. I’m sorry to hear about your mom. I hope she finds some healing both physically and emotionally.

runswimfly1231 karma

28 y/o with PsA and Psoriasis since I was 24 checking in. Some days feel like i’m 28 some days i feel like i’m 78. #methotrexate #enbrel

plant_king18 karma

Just seeing methotrexate written makes me feel sick lol. So glad I'm not on it anymore!

kindbar345 karma

me too! Didn't work for me, but glad it helps a lot of people.

dontbefooled2679 karma

I am in almost the same condition you are. Any tips you can give me on how you've been holding on?

kindbar34600 karma

Sure!

Having a support system is so important. It's a really hard thing to go through alone, and asking for help sometimes is essential. If this means you see a therapist, this can be really helpful for people going through these types of issues. I know it can be hard to explain the nature of your life to someone who doesn't and will not ever understand, but encourage your friends/family to ask you questions so they can get to know what your everyday life with illness is like to better understand you.

Every person is unique, but I would definitely suggest playing around with diet changes to see if any foods trigger your symptoms. Most doctors won't recommend this, but I can assure you that this does help most people manage their symptoms.

If you're in school or working, talk to your employer or disability student services about accommodations that might be helpful. Maybe you don't feel you "need" anything, but accommodations are there to make someone who has a life that is harder than the general population just a little bit easier. I took advantage of accommodations half way through college and wish I did earlier.

That's all I can think of off the top of my head, but if you have any specific questions about certain things please ask!

Fuckdartmouth583 karma

What's the last movie you watched?

kindbar34534 karma

haha pretty sure it was the movie "Dude" on Netflix. It wasn't great, but I enjoy cheesy coming of age drama/comedies.

steal_it_back82 karma

Oh no! I've heard that movie is terrible!

kindbar34134 karma

I wouldn't say it was terrible, but it wasn't good. It was entertaining to me and I finished it.

Rickrickrickrickrick94 karma

You know a movie is bad when they have to tell you they finished it.

kindbar3415 karma

hahahaha

quaffcravat415 karma

You seem to be enjoying yourself more than me, why is that?

kindbar34567 karma

I don't know what makes you say that! I can't speak to your own experiences, but I can speak to why I enjoy myself/my life.

I'm generally just a really joyful person and enjoy my life very much despite its challenges. I have an incredible support system, and I also pour my heart out into a job which serves others. I truly believe those that help others receive will just as much in return, and that we are called to do so.

I also have a close relationship with God, and I believe that's a big reason why I have a lot of joy and happiness in my life.

TheDevilsWork28 karma

[deleted]

kindbar34108 karma

I see God in everything I do and everything that is around me. I felt lost for a really long time in my life, and when I first started to know God, it felt like things just made sense - as cliche as that sounds.

cutelyaware-26 karma

Do you ever wonder why God doesn't fix you?

kindbar3412 karma

I used to. I don't anymore.

CaptainIronBoobs302 karma

Do you relate to the glass bones and paper skin guy from SpongeBob?

kindbar34178 karma

hahahah I've never thought of this, but yeah, I guess so!

PjDazzles197 karma

I'm a medical student, I dont know much but I know enough to know how difficult those diseases can be. I had the flu last week and thought I was going to die and this really puts it into perspective. Sorry, hope it doesn't sound like I'm comparing. I don't know you and I'll never meet you, but I admire you. Not because of your illness, but because of your outlook. I hope you brave whatever challenges you face and live a life you love. I need to ask you a question for the ama so.....whats your favorite food?

kindbar34139 karma

Thank you so much. I don't mind the comparison. I actually have had many friends tell me something similar, and it really means a lot that they put themself in my shoes to help be more empathetic toward what I go through.

I love thai food. Alll of it. Pad thai, pad see ew, tom kha, fried rice, curry. YUM.

TheAwesomeHwyh137 karma

My question is how does this affect your everyday life?

kindbar34481 karma

I changed it to include better evidence for ya.

Physically, in my everyday life I suffer from a lot of extreme fatigue and general pain (joint pain mostly, inflammation in the rib cage, stiffness). I also get nausea, swelling and migraines regularly. I have a scaly, inflamed rash that covers my entire scalp that is itchy, dry and uncomfortable. Lupus makes me really sensitive of the sun, so I have to be wary of that because it can exacerbate symptoms.

These physical issues lead to me often having to spend a lot of my time doing logistical stuff to take care of myself like ordering prescriptions, visiting different doctors and going to the pharmacy, talking to insurance companies on the phone, etc. I have a full-time job, and it is hard for me to work a full 8 hours, I often feel exhausted and won't get much other things done that day. I have to take more time off than the regular person because of bad days with my illnesses.

It also leads to a lot of emotional issues for me. I suffer from anxiety and depression stemming from my health problems. I often feel a lot of loss and shame for what I deal with. Relationships can be difficult.

But I also think it makes me a more empathetic and compassionate person. I'm also very driven because I don't my health to stop me from doing the things I care about.

tomphz107 karma

As someone dealing with a condition that is embarrassing and brings me shame, I really admire you.

kindbar34109 karma

Thank you. I hope you can overcome the shame and know that you're doing the best you can, and deserve all the happiness in the world.

swolemedic28 karma

I'm really sorry you have to go through all of this but what you described really resonated with me, I'm going through similar enough autoimmune issues and it's fucking annoying as can be. I have thankfully recovered well from the lesions on my spinal cord but my family seems to think that because I can walk again that I'm not in constant pain and tired all the time, the answer is I feel like I'm dragging 24/7.

Not trying to make it about me, just saying what you said probably resonates with a lot of autoimmune sufferers. The fatigue, the pain, the rashes, the swelling, the sun sensitivity, the temperature sensitivity, the lethargy/being tired (it feels like there is never enough sleep), dealing with the stupid fucking insurance companies, the anxiety, the depression, all of those annoying things that many of us autoimmune sufferers have to deal with.

Stay strong

kindbar3413 karma

you too <3

BedsideTiger72 karma

Can you switch to Manualimmune?

kindbar3423 karma

I don't know what that is

BedsideTiger57 karma

A really lame joke. I have brought dishonor to my name

nobodytrickedme8 karma

They were trying to say, can you turn your immune system from auto(matic) like a transmission to stickshift/manual- immune system)

It was a really bad pun, which is the best kind. Started giggling when I through about explaining it.

kindbar345 karma

Oh hahaha I get it now. I was very sleepy when I read it.

queenjenay64 karma

How did you adjust your diet to help with your diseases? What seems to make your symptoms worse?

kindbar34155 karma

I did some trial & error elimination diets, where you essentially eliminate certain foods from your diet and then slowly reintroduce them and see if any trigger your symptoms. You can read a lot about different elimination diets online, but there are a lot of common foods that are known to cause inflammation, one of the biggest issues involved with Lupus/arthritis.

I stay away from sugar, dairy and gluten. Not to say I never have these things, but I find avoiding them helps my symptoms the most. I don't eat a ton of meat or processed foods, and try to keep my diet very high in vegetables and fruits.

lmaccaro29 karma

keto appears to be very helpful in fighting inflammation.

also reddit loves keto.

kindbar3441 karma

my diet is very keto-friendly, I just don't include much dairy and sometimes include rice and legumes.

grimsfield27 karma

I have ankylosing spondylitis, an autoimmune disease that has some commonalities with some of the things you're dealing with. Have you heard of the low FODMAP diet? I've tried a lot of diets, and this has helped me the most.

kindbar3417 karma

I have heard of that, I'm glad its helping you!

Imakefishdrown53 karma

Was it difficult to get diagnosed with any (or all) of these? Or were you diagnosed fairly quickly?

It took over two years for my sister to get diagnosed with her autoimmune disease that was killing her thyroid, cause it wasn't typical for her age group.

kindbar3457 karma

It definitely took awhile. For all of them! It's definitely a trend for autoimmune diseases to take awhile for diagnosis, because a lot of the symptoms of certain illnesses align with symptoms of other diseases.

Psychocrates52 karma

Have you found anything that manages the psoriatic arthritis pain?

kindbar3467 karma

My pain from psoriatic arthritis is very low right now. I can't know exactly why it is and what is helping with it, because I do many different things to take care of myself. It's a combination of medications (immunosuppressants and prednisone, pain medication when necessary), dietary changes, vitamins, exercise, acupuncture and pain management.

evenios36 karma

so sometimes it is lupus?

kindbar3422 karma

yes!!

PhatJohny34 karma

What's it like being a total bad ass?

kindbar3431 karma

Thank you!

SquirrelAkl33 karma

Have you had your microbiome mapped? I ask because I just got my results today and the doc said if I leave the bacterial imbalances untreated it would likely lead to autoimmune disorders developing later on. If you have, what did it tell you and what changes did you make in diet, medication etc?

kindbar3427 karma

I haven't and don't even really know what that means!

Arbitrary_moondust23 karma

What is something everyday your diseases make difficult for you that we may not expect?

kindbar3474 karma

In my worst flares, getting dressed and opening my pill bottles were big challenges.

This might sound silly but honestly one of the hardest things for me to do is folding laundry. Not necessarily because of pain, but extreme fatigue. It doesn't seem like a huge task, but it is so physically exhausting to me, especially after working. I usually wait a long time to do my laundry because of this and it piles up, so I carve out an entire day to try to get it done. Often my clean laundry will stay in its basket for days because I've been too fatigued to fold it and put it away.

catacavaco21 karma

Do you think stress can also be a trigger for auto immune diseases?

kindbar3428 karma

Yes

Dudefishyt16 karma

I got my auto immune disease at 13 too (ankylosing spondylitis). This might be too personal, but how much would you say your friendships and academia was affected by your illnesses? Were people understanding, etc?

I feel like more awareness needs to be raised for young teens with 'old people' diseases.

kindbar3413 karma

It affected it A LOT. In high school friends weren't understanding. In college, I created really meaningful relationships and had a really great support system.

89Maxwell13 karma

Hey!! My question for you is... what is the one thing you wish you could do but can’t because of your diseases?

kindbar3442 karma

There aren't many things that I can think of that I just straight up cannot do. There are a lot of things that are a lot more difficult for me, or maybe wouldn't be right for me during a certain time but that I might be able to do later.

When I was in college, I really wanted to study abroad for a semester in Italy or Argentina. During the time of applications, I was going through a really bad flare period and was having some complications, so my doctor advised against it and I decided not to go. I was heartbroken. But, I ended up studying abroad for a few months in the following summer to France, and also participating in several shorter immersion or vacation trips abroad.

Balaguru_BR59 karma

I feel like I should feel sorry for you, but your sheer optimism just makes me really happy. If you don't mind my insensitive questioning, how do you support yourself financially with all the setbacks you have?

kindbar3418 karma

Thank you! No problem. I will say that I am not completely financially independent from my parents. I am a recent college graduate and my car insurance and cell phone bills are still paid for by my parents.

I work in a residential community for adults with intellectual disabilities. I am given free room and board as well as hourly pay for working and living there. So right now, I'm saving money on renting (southern california rent is really expensive and would probably take up most of my pay check). I make enough to afford my co-pays, medications and appointments as well as have enough to have fun (:

Kelkymcdouble9 karma

[deleted]

kindbar3428 karma

I don't take any medications or use any topical medications to deal with Psoriasis.

I mostly have Psoriasis on my scalp. I've found that using a humidifier helps with the dryness, so I use a humidifier at night. I do heated hemp oil treatments on my scalp about two times a week to help with the dryness, itchiness, pain and flaking. I use natural shampoo & conditioner - dr.bronner's baby non scented castille soap and shampoo and apple cider vinegar as conditioner. I try to not wash my hair everyday or pick at my rash. I also have been getting acupuncture regularly for a few months and most of my other spots have almost completely cleared up, besides my scalp.

If you're asking this because you have Psoriasis, you should check out r/Psoriasis. Everyone is different and there are lots of people on here sharing what they do to help their Psoriasis.

ohnoitsthefuzz17 karma

Have you considered trying one of the newer biologic treatments for psoriasis? ) I remember doing a seminar on Stelara in pharm school (before it was on the market), and the results were extremely positive. It's an antibody to interleukins 12/23, which are derped in people with psoriasis (psoriatics? That sounds vaguely racist, lol) And I believe it helps with the related psoriatic arthritis as well. There are a bunch of newer medications I'm less familiar with too. Sorry if I'm going over stuff you already said, just commenting quickly before conking out.

Heck, consider contacting the people working on CRISPR research. You could be the first human to have their genes modified to cure an autoimmune disease. Regardless of what you do, you're awesome, please continue trucking. (☞゚ヮ゚)☞

kindbar3415 karma

My Psoriasis isn't severe enough to get biologics approved by insurance. They are expensive and hard to get approved.

pizzabeagle8 karma

I also have psoriasis and paoriatic arthritis. The meds ruined my thigh muscles. Any tips for non prescription relief?

kindbar3430 karma

Marijuana and CBD, heat and ice, acupuncture, compression gloves/socks, exercise, arnica

ieatassonfirstdate7 karma

How are you?

kindbar349 karma

I'm really good. A little bit tired, but I'm having fun answering everyones questions on here.

betterdays896 karma

Hey there! First of all I just want to take a moment and share in some of your pain! I'm 28 myself and have Hashimoto's, Psoriasis and severe allergies! F autoimmune diseases straight to hell eh? :) I've recently been strugging with depression myself over my health so it's nice to feel like I'm not alone in the fight!

I wanted to ask you a question bout the "rib inflammation pain" you mentioned. I believe that I am struggling with that myself and that it keeps being misdiagnosed as acid reflux because I have a stomach hernia. For me, I get very sore and tender to the touch right between all my ribs at the front of my rib cage. I always decribe it as it feeling like someone has kicked me in the ribcage. When I am sore there it also becomes painful to take deep breaths or do anything to expand my ribcage. The pain seems to be very localized right beneath my skin. Is this at all what it feels like for you?

I wish you all the luck in the world in recovery and future wellness friend!

kindbar346 karma

Definitely sounds familiar. Taking deep breaths is very painful. Laying down makes it more painful. I went to the emergency room when it first occurred and its called costochondritis.

ZBroYo5 karma

I know this might be an odd/offensive question but do you ever regret living sometimes? These annoyances in your life have they ever pushed you to contemplate suicide? I’ve read you’re very religious so that might be an answer as to why you aren’t at all feeling life is unfair. Sorry if I’ve offended you someway but I’d love to hear your answer.

kindbar344 karma

I struggle with depression and hit a very low point where I definitely thought about it, but never acted on it or even came remotely close to acting on it. A friend alerted someone and I was given immediate counseling. It was a really dark time in my life.

I am religious, but I don't think being religious can cure chemical imbalances in your brain which lead to these types of thoughts. My faith helps me to cope with my illnesses, and it helps me immensely, but I need more than just faith to deal with my depression. I don't take any medication, but I use a lot of different self care practices to make sure I'm taking care of myself.

My thoughts were never life is unfair, but more of hating my life and hating who I am. I don't have those thoughts right now, but it isn't to say they won't creep back in eventually. But I know how to take care of myself when/if they do.

Nabooru805 karma

What kind of crazy elephant dose of steroids do they have you on, and what kind of side effects from them have you experienced?

kindbar349 karma

Right now I'm on 10 mg and don't have many side effects from them at this time. I feel very overheated a lot of the time, that's the only one I can think of.

I have been on a much higher dose. During that time, I had an incredibly swollen face, extreme insomnia, and had random swelling in my foot. I could barely walk on it for a few days. Stayed swollen for about 3 weeks. Picture: https://imgur.com/a/h7bWo77

UnfilteredAmerica4 karma

Do you fear death, or does death fear you?

kindbar3416 karma

I don't necessarily fear death itself, but I do fear that it may happen earlier for me than most. It's not a super rational fear, because many people with my conditions live long lives.

JoshT14 karma

Have you looked in to stem cell therapy? If yes what are your thoughts on it?

kindbar342 karma

I have not! I've actually never heard of it in regards to autoimmune diseases.

Ebola-Virus3 karma

How does the Benlysta affect you? My wife just started a few weeks ago and we’re looking forward to it’s benefits.

kindbar345 karma

I had my 4th infusion about three weeks ago. You usually start seeing results after the 4th infusion, but I felt like I was feeling a bit better after my 3rd infusion. I have a little bit less fatigue and my arthritis pain is doing really well.

kirito_s_a_o3 karma

Keep up the good fight! You are a badass!

Forgive me as I have a few questions... I’m curious of your medical journey (as a medical student myself). Did all of your symptoms show up at the same time or one disease at a time? Did you play inside a lot as a child? did you have pets growing up?

kindbar347 karma

No problem! They mostly showed up one disease at a time. I had Psoriasis since a young age, elementary school some time. In middle school, my skin became very hyperpigmented, I lost a lot of weight, was craving salt, had trouble breathing, and had extreme fatigue. I went to the ER and was admitted to the hospital for an adrenal crisis for 3 days. Diagnosed with Addison's Disease. In the middle of college, I started having more problems. Fatigue got worse, fingers, knees and elbows were swelling. Stiff and painful joints. Sensitivity to sun. Diagnosed with Lupus, then after treatment and still experiencing joint swelling doctor realized I also had psoriatic arthritis.

I think I played inside/outside a normal amount, as far as I remember. I had some pets - a few different cats and dogs.

xiguy12 karma

Do you see an immunologist for these issues and/or a rheumatologist? How have medical professionals helped you? How much has been rooted in self care and how has attitude and stress management helped or hindered?

I know, lots of questions. :-)

I have my own (different) immune and chronic pain issues and yet I’ve never had much chance to speak with someone else (aside from docs) to compare experience.

So thank you for doing this and for any info you are comfortable sharing:-)

kindbar342 karma

I see a rheumatologist and an endocrinologist. Doctors have helped me to a certain degree. Medications have helped me manage my illnesses definitely. But I feel that lifestyle changes, self care, attitude and stress management are HUGE factors to living successfully with illness.

ChronicBurnout32 karma

How much do you exercise and what relation does that have to your well being?

kindbar342 karma

It depends on how I'm doing physically, but I try to get some sort of exercise in each day even if its just a walk. I feel a lot happier and physically better when I exercise. I sleep better too.

Solumin2 karma

Have you seen the connection between "adverse childhood events" (e.g. child abuse) and autoimmune disorders? e.g. this study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3318917/

Does anyone else in your family have autoimmune disorders?

kindbar342 karma

I haven't heard of that study, but that's really interesting. I didn't have any sort of childhood trauma or abuse.

I'm the only one in my family. I'm actually a twin and she doesn't have any, just me!

RhalezFlavis2 karma

Is your twin concerned about potentially getting the illnesses in the future? Assuming it's a matter of gene expression, it could be that your twin has the same genes, but they just lay dormant.

kindbar342 karma

She hasn't shared that concern with me.

Direwolf2022 karma

How did you find out about your conditions?

kindbar343 karma

I faced a lot of different symptoms and went through extensive testing, ER visits, hospital stays, etc. to diagnose the issues.

FrozenDeadDove2 karma

Are you going to reproduce? If so why?

kindbar342 karma

I'm not sure yet! That is something that I have a lot of anxiety about, so I try not to worry about it until I'm at the point where that will be relevant in my life.

kknight852 karma

My 6 year old daughter is named Addison and has juvenile arthritis so there is some irony here. What advice should I give her going forward from someone who can more relate to her situation?

kindbar349 karma

always listen to what she has to say about how she's feeling and take it as face value. Don't wonder if she's exaggerating or if her pain is real. Support her by listening and trying to empathize.

kknight855 karma

I try to. She hates her weekly methotrexate shots but they are helping so far and she can still do dance, which she loves, with no pain.

kindbar345 karma

I hope she finds the right treatment and care plan for her and can live a fulfilled life.

PM_CUTE_PUPPIES_PLS2 karma

Vitiligo, psoriasis and eczema here! Given the length of time you’ve dealt with these issues, I assume you’ve already tried T-Gel tar shampoo for the scalp psoriasis? Worked wonders for me. I guess this comment doubles as spreading the word to other people with psoriasis on their scalps!

kindbar342 karma

Doesn't help me, but glad it helps you!

Son_of_Atreus2 karma

My MIL has Addison’s disease and she doesn’t talk about it much although she is super careful with her diet.

Can you explain what this disease is like and how it impacts your life?

kindbar343 karma

I've answered this quite a bit already!

actionboy212 karma

Jesus, how fucked are you? Did the doctors give a timeline? You have my sincerest apologies and hope you live your life to the fullest. P.S. don't work in retail. Your life is being tormented enough.

kindbar343 karma

They are all manageable and I should be able to live a long life.

monitorcable2 karma

Has the keto diet every been proposed as part of your treatments?

kindbar343 karma

Doctors NEVER propose diets, in my experience.

DvrkMvtter1 karma

Whatcha up to right now?

kindbar342 karma

nothing really at all, watching Netflix

ihatethesidebar1 karma

What is your view on eugenics?

kindbar341 karma

don't know that much about it

justcontemplateit1 karma

You mentioned that you struggle being out in the sun. Have you looked into red or infrared therapy? There seems to be some promise there in treating psoriasis, and they don't involve UVB radiation. Red light particularly is very easy on your skin.

Also I saw in the comments that you'd tried a dietary approach. Personally I need to cut out all nightshades as well as the typical gluten/dairy/sugar combination. I generally need to follow strict AIP for about 3 weeks to be free of most symptoms (inc cutting grains and legumes) - obviously you'll know what works for you and what doesn't though.

Supplement wise, lactoferrin has been shown to have a regulatory effect on the immune system and help inflammation / autoimmunity. It's not cheap but it's the best supplement i've found. I know some people swear by colostrum, I haven't got much experience with it though and don't have a study to hand.

Hope things improve for you, glad that you're able to find so much happiness in spite of your circumstances!

kindbar342 karma

I tried some sort of light therapy awhile back, where I went to the dermatologist and they applied some light gun thing to my head in different places. It didn't help me but I don't know if its the same thing you're referring to, I can't remember exactly what it is.

DoiX1 karma

Do you take a fixed dosage of prednisone, do you vary it depending on how you feel or do you monitor your cortisol levels periodically and go from there?

kindbar341 karma

I take a fixed dosage, but I also take more depending on how I feel as needed.

kas-loc1 karma

I've got psoriasis and psoriatic arthritis too. Got the psoriasis from head to toe and the arthritis in my neck, shoulder, back, left thumb and both big toes. It hurts. So much.

What're some thing you do to treat the arthritis? I've heard vitamin D helps but not me.

Also you've got a fantastic outlook still. Mines near ruined me emotionally. I'm jealous of that. Keep up the good battle!!!

kindbar342 karma

I take prednisone, naproxen and hydrocodone as needed.

DvrkMvtter1 karma

Where are you from:)?

kindbar345 karma

I'm from Southern California!

DvrkMvtter2 karma

Heyyyyyy hey hey heyyyyy,me too! Ventura County!!

kindbar342 karma

cool! I'm in Orange County.

up2late1 karma

Do your medical conditions or the drugs to treat them limit your outdoor activities? If so, how does this affect your overall level of happiness?

kindbar343 karma

I would say yes in some ways. Sometimes my pain is too much to go hiking, do outdoor yoga, and other activities I enjoy. On really bad days, I might not even leave my house or bed. On those days, I definitely do not feel very happy. But I try to make the most out of the good days I have.

hell2pay1 karma

What is something that makes you smile daily?

What is your favorite thing to do!?

kindbar348 karma

I've been with my boyfriend for 7 years and he is constantly making me smile. Also just being outside and noticing how beautiful everything is always makes me smile everyday. I love looking at the sky, clouds and sunsets.

Hard to pick a favorite thing. I love doing yoga, spending time outside, writing and getting a good cup of coffee.

hell2pay1 karma

That is a pretty awesome aspect, for certain.

Do you ever or have every experience TSW (Topical Steroid Withdrawl), or are you mostly using things like Humira type medicine?

And how much does your current form of treatment help, vs the obvious drawbacks of taking an immunity blocking medication?

Edit: Sorry my brain isn't working too well tonight, very tired.

The word I was looking for was taking immunosuppressants, like Humira or remicade.

kindbar343 karma

I think you're mainly referring to the Psoriasis. I've never experienced TSW, I don't use topical steroids to treat my Psoriasis because it's never been helpful. My biggest problem area is my scalp, and I have a lot of hair, so its not the best way to treat it for me. I also do not use biologics like Humira as of now to treat Psoriasis.

I don't use any sort of treatment for Psoriasis that has been medically prescribed by a doctor. I've tried several different ones and nothing has ever worked, including the immunity blocking medication methotrexate. My Psoriasis is not severe enough to get a biologic approved by my insurance.

I moved to one of the most humid spots in the country for a year and my whole scalp cleared up. I'm now back in CA and it all came back, but using a humidifier has helped me be more comfortable. I also do heated hemp oil treatments on my scalp, which really help clear all the flakes. Neither of these make the Psoriasis go entirely away, but make me comfortable enough to live with it.

kindbar342 karma

When you said immune blocking, I sort of thought you meant chemotherapy drugs, which is why I brought up methotrexate.

I am on two immunosuppressants for Lupus, and have been on a few others but they have done nothing to help my Psoriasis. They do help with my Lupus and arthritis though.

hell2pay1 karma

Ah, I understand.

My ex took Humira for Psoriasis, as she had it really bad.

During her medication cycles, she'd be very worried about getting the flu or anything, as it really lowers your immunity to much of anything. She also had to combat Chrons too.

I also know someone who was using topical steroids for Psoriasis, and she developed a severe case of TSW, covering her in a severe rash that made he lose hair, and is taking years to recover from.

I hope you are managing life great though.

kindbar342 karma

I have to worry about getting the flu or infections as well because of the immunosuppressants that I am on. But yikes! TSW sounds awful. Dermatologists really push topicals, but they don't work for many people and they do awful things to your body. I figure if its not working for me, there's no use in putting my body is further harm.

Thank you!

Dani26241 karma

We're on the same medicines, except I also take methotrexate and I'm on 10mg of prednisone. I have EDS, lupus, scleroderma, rheumatoid arthritis, and MCTD, so because of that, I basically have polymyositis too, I just don't test positive for it. It all started 24 years ago when I was 3, thats when I developed scleroderma.

Have you tried Humira, Enbrel, or Orencia? Honestly, none of them worked for me (I think my body is just weird), but my rheumatologist said they usually work great for arthritis.

kindbar343 karma

This page is sort of old, so my medications are a bit different. I developed an allergy to Plaquenil, so I'm no longer on that. I'm also on Benlysta.

I've never tried those drugs. My arthritis pain is really under control right now for my most part, which has been great. I made a lot of lifestyle changes including diet changes and with the addition on I've seen a lot of improvement for the arthritis symptoms. The only lingering pain I get right now is inflammation arthritis in my chest. I tried some medical marijuana for the pain last week and it worked great! I'm looking for a CBD brand to try to help with that pain as well.

Dani26244 karma

oh ok, I'm glad it's mostly under control and the medical marijuana worked well. I'm still really struggling to get everything under control, I'm on the highest doses of everything except prednisone (though it seems like every 8 or so weeks,I'm back to 15-20 mg of it), and I've basically tried every medication they make. It sucks so much, but I found out this morning that I was approved for disability, so at least I'll finally be able to afford all the medication, that's one less medical thing I have to worry about, haha.

kindbar342 karma

I'm so sorry that you have to deal with all of this. I know how overwhelming and hopeless it can feel.

I'm glad you were approved for disability and hope that makes things easier for you. If you ever need someone to talk to, don't hesitate to send a message my way.

dboy3351 karma

You have a lot of serious diseases, since you actually know what it feels like to have the actual pain, can you spot a hypochondriac when you see one/hear one?

kindbar345 karma

Hm. Interesting question.

I think because of my pain, I notice a lot more just how often people complain about their own pain. I tend to not talk about mine because I fear it might make people uncomfortable and I would just be talking about it a lot. I also just try to be positive and ignoring the pain often makes life more enjoyable for me.

So that really makes me notice just how often others will complain from a simple stomach ache or headache.

I would never want to make an assumption that someone is making up their pain though, because it happened very often for me. My pain and suffering was very REAL and it took months for doctors to take me seriously.

martin80k1 karma

is addison too much cortisol? do you take any herbal and natural supplements or just pharmaceutical grade?

kindbar343 karma

Addison's is not enough cortisol. The body doesn't produce any. I do take some.

SirLordChris1 karma

Anything you felt like you missed on in life due to your condition?

kindbar343 karma

Definitely. I try not to think about what I've missed out on though. I try to focus on all of the great opportunities I have had, and the growth I've experienced because of my circumstances.

oNOCo1 karma

So, are you immune to diabetes? :)

kindbar341 karma

not sure what you mean

patoezequiel1 karma

Damn, I'm comparatively a shameless weakling, you're so resilient!

Going for the question: How did your condition affect your dating life?

kindbar343 karma

I've been in a long term relationship for 7 years, which was before I was diagnosed with Lupus and Psoriatic Arthritis. We started dating in high school, and it was really hard for me to open up about it at first. I said in an earlier answer that I struggled in high school because I really wanted to pretend my health problems didn't exist and I ignored them. When I finally opened up, he was really supportive and has been since. He was there with me through my other diagnoses, he takes care of me when I'm having bad days and is just incredible. I imagine dating with chronic illness can be difficult for many people, I just got really lucky early on with a wonderful man who encourages and supports me through it so well.

vegeterin1 karma

Which diagnosis came first, and what was the progression of diagnoses? Or were you diagnosed with them all at once? I have Celiac Disease, which I know doesn't compare to what you are suffering through, but I can't pretend I'm not scared I'm headed down the same road.

kindbar342 karma

I've had Psoriasis since a young age. About elementary school. It was misdiagnosed and wasn't correctly diagnosed until later. I was diagnosed with Addison's at 13, Lupus at 19, and Psoriatic Arthritis about six months after Lupus.

Lord_Whis1 karma

Why is your ethnicity on the form "Not Hispanic or Latino?" Haha, sorry for the dumb question

kindbar342 karma

I don't know, that's how the doctor filled it out.

fukkinmike1 karma

Thank you for doing this!

I suffer from Psoriasis and PA as well, and it is incredibly painful and embarrassing. Do you take a biologic that works? I either get sick or nothing happens. I need help and don't know where to go. I'm sorry for asking such personal questions but I'm at the end of my rope, Thank you, best of luck ma'am.

kindbar342 karma

No worries. I don't take a biologic. I'm sorry you're suffering!

-Abradolf_Lincler-0 karma

When do you expect to get Crohn's disease?

kindbar341 karma

I hope that I don't...

krisgold55-3 karma

Does lupus make you lazy and stay indoors? Does it cause hip problems? I know of a women she's 24 and always posting about needing another hip replacement.. perhaps it's the hip that causes her to stay indoors and rant.. 🤔

kindbar344 karma

I wouldn't use those words. But Lupus does cause you to sometimes need to stay in bed due to pain and what I can only describe as flu-like symptoms but worse. Is it laziness? No. It's because you have no choice in the matter. Lupus can essentially shut your body down for a day, it doesn't care what plans you had or what things you need to get done. I've had many days where I have not stepped outside because of Lupus, not out of laziness. If you see in my answers above, I actually love the outdoors and its heartbreaking when this happens.

It can cause hip problems. Arthritis is a major symptom of Lupus and arthritis is very common in the hips. I remember at the height of my worst Lupus flare, my arthritis pain in my hip was so intense that I could barely walk or get out of bed at times.