The Sarcoidosis Vlogs #1 - I Have Sarcoidosis - Level 4 Pulmonary Sarcoidosis

[@feliciawilliamsgary1989]

I have pulmonary and cardiac sarcodosis and fibrosis stage 4 . It is hard and I keep my faith in me and my hope. Keep your head up and know that you aren't alone.

[@andrewbarker4992]

Guys I'm 58 years old have had sarcoidosis since I was 24 years old I've now got lung fibrosis thats given me pulmonary hypertension never been on oxygen been ill plenty over the years but never gave up weight training at a high level and I used to do a lot of running to fight this thing obviously I can't run anymore but I workout with my weights every other day I can't stress enough exercise helps over the years eyes n joints have all took a beating but don't give in fight it everyday remember guys keep on punching

[@oshea2300]

We all have a God-shaped void, that we try to fill with counterfeits that only Jesus Christ can fill.. he wants a relationship and fellowship with us. He loves us and wants to spend eternity in heaven with us. We need to be sorry to God for what the Bible says is sin. Only once we realize we're lost can we be saved by trusting and the life, death, burial and resurrection of Jesus Christ. He shed his blood for us taking our sins upon him, and he gives us his righteousness when we put our trust in his finished work on the cross, asking him to forgive us and save our souls from hell.

[@raybiggy1363]

How is your strength training coming along? Did it get worse?

[@stephenhutto7652]

Thank you. I have had the disease for 13 years now. Was just diagnosed 3 years ago. I have a large family, and a lot of people who love me. I'm thankful for the power of God to get me through. I've been very frustrated from time to time with doctors and treatments before they finally figured out I wasn't "crazy " but really sick. Thank yall for your stories and sharing how you get through. God bless yall.

[@jessicachristian9712]

I appericate your story! I am 38 when i was 16 i had cancer the blemocycin, damaged my lungs so bad they treated me for tb, lung cancer until i was finally placed in icu in a drug induced coma with a collapsed lung. From 19-30 in remission. Recently back in march i ended up with a pneumothorax. I have been to several different doctors and remain. With shortness of breath, vomiting, cant walk up stairs. I also have trouble walking, talking, and eating periods at a time. I am becoming depressed and more aware of my mortality. I also got diagnosed with pulmonary fibrosis. I am nurse. Its makes me a better one. Oh how i wish to run after my son. (Who's 6 by the way). I was ready to stop fighting but stumbled across this. Thank you! I want to be apart of the awareness. I am the only one left in my local group. I wish you all well. You will be in my prayers.

[@thesarcoidosissociety2109]

Wow thank you for sharing that Jessica, you know how I feel right now thats good.... and I am sorry for not doing kore with this in the past year, I have been focussed on my career and paying bills etc.. I made this a year ago when I was off work and made it into this massive entity that I am in no way able to run on my own. My heart is in the right place but man I did good but too good. Over the past year I have lost so much of me, my energy, mentally and physically, mental health has changed a lot as well... all I can do is go to work, thank god I am a supervisor so I stand around and watch people and boss people around LOL but once I get home that is it to me thats enough, mentally I can't leave the house and if I do I want to go back home, it is like a safe place for me now. My career has been the backbone to my life and I started my dream job and I had to focus on that and be the best, and I am there, I made it.... now I realize all of you watching me here and awaiting what's new or how I am doing and I'm like OMG what have I done, I feel like I have let everyone down. I promise I will be doing more with this this year, I am only a one man show, and I have been offered help but sadly they are empty promises by most people, but I get it. So if your looking to help out in anyway I sure could use the help....

[@debramoreland1968]

I have Sarcoidosis and it gets very hard sometimes and I pray for you sir and thank you for this video

[@raybiggy1363]

So right when you mentioned the good days, and bad days, I was diagnosed 4 years ago but it was a frustrating process getting the diagnosis. There was so many other things that they had suspected, I’m 49 and have always been physically active, the gym was my go to peace, my therapy. Today obviously I cannot always go because of this disease, but I still try and push through it, I know it can get hard but hang in there my friend. I’m still learning about my condition, I just need to straighten out my diet to alleviate the inflammation this disease flourishes on. Take care guys, I hope and pray 🙏🏽 we all get well.

[@belissimahoney69]

This is scary. I’m waiting to see pulmonologist

[@beesknees508]

I've been diagnosed in july 2020 (dublin,ireland). Testing going on 2 years. I told GP for years I've had unusual chest pains, sore joints, feeling faint. He put it down to anxiety. I've good days, bad days with no solid support & have a bag ready beside me everyday incase of emergency. I'm terrified of dying in my sleep. I'm trying to organise my life, down sizing right now just incase it knocks me out I want to leave stuff for certain ppl. House etc. It's so hard to explain to ppl as it's an invisible disease & for someone like me to get it is odd to ppl around me because I used to be so independent, solo traveller, life &soul of the party - so ppl think I'm talk shit. Friends have left me. Family don't care. It's a tough one folks. Thk you for making this video. Much love 🙌❣

[@saoirsehaslonglegs2313]

Oh,my friend,God Bless You,.i too have been recently diagnosed.it started with painful joints,thought it was psioratic arthritis..but rheumatologist just sent me away.that was about 2 /3 yrs ago.its in my nails,skin,.i have it in my lungs,& my lympnodes are all enlarged too.i have it in my lungs,& dont know what stage yet.i have constant chest pain ,& constant headache.& other symptoms,i feel very unwell.im a single parent,i have 2 teenage daughters..who are currently arguing& annoyin me..i used to live in dublin,many yrs ago,i now live back in the shitty brexshite tory fascist uk..😆😥im in shock,i only found out yesterday..😨😓..i will stay in touch with u ,if u like,i love a man with an Irish accent.😆😅🤣.perhaps we even met wen i lived there?!.So sorry to hear u feel alone/lonely.. God Bless,thinkin of u ,sending u best wishes.& loads of Irish Luck.☘🍀☘☘🍀

[@TSNNH]

I just got Diagnosed in july this year and i am going through hell since then.... Thank you for doing what you do!!!

[@walrusfest]

My prayers and thoughts are with you.

[@intensepassion3382]

My Mom had sarcoidosis. I miss her tremendously. She introduced me to this illness, but when she passed, I have overtaken by grief. God bless you.

[@siobhonmason3434]

My daughter got it from them improperly handling my child miscarriage. And now we are severely suffering and so much other stuff. The meds doesn’t help it cause more problems. Thanks for sharing your testimony. I hope it gets better for us I’m scared I don’t wanna loose my child 😢

[@AngelznDemonz]

I was diagnosed with stage 4 sarcoidosis about 4 months ago now, unfortunately drs still are not 100% as to what causes this disease, but it is not an auto immune disease, what it is, is a very aggressive inflammatory disease, what I have had to learn is all about what we put in our bodies and change it, this hasn't cured me as there is no known cure , however it has helped me hugely, i am not on medication or Oxygen , i myself have good days and a few bad, damp air and humidity are my bad days I've noticed. I've changed all of my dietry intake, no longer have salt, or sugars (natural honey is fine) , no red meat, carbonated drinks, no cheese, white bread or white rice. Im not sure if any of what I'm doing is going to help anyone else as we are all different, but i hope this can maybe give someone some ease in dealing with their diagnoses. 🕊🖤

[@MARKHERE-pl5gp]

Today i am diagnosed with sarcoidosis in lung and i m 26years old. I usually have cough and sometimes and sometimes heavy breathe. Doctor told me that, my treatment will go for 18 month. I hope Allah bless me.

[@FrankDannetti]

I have it to. You wanna talk I’m here. Tearing up watching this. Finally someone I can relate too. Stay strong my brother. I don’t know you but I love you. I have a 4 year old and he keeps me going. Let’s stay 💪

[@thesarcoidosissociety2109]

TRH SPORTS thank you for that amazing comment. This is why I created the SSI to help unite people, inspire people and to feel the sense of support, family and love. Many don’t have those luxuries so this was my way of helping people not to end up like me, alone scared, depressed and in denial.

[@rosel.150]

I was diagnosed with stage 4 Cardiac and pulmonary Sarcoidosis after a stroke which lead to being dead for 1 minutes and 20 seconds. I also break out on my skin in huge rashes periodically and am getting tested soon to see if it is on my eyes. After many tests this was my diagnosis. I was being considered for a heart transplant until they called it Sarcoidosis. Different medications has kept me alive, but nothing has helped my lungs. I just got a notification that my lungs are much worse, but I don't feel any different. I have an appointment with my lung doctor to try and figure out options. They tried prednisone which did not help at all, but did help me to gain 80 pounds which I have been able to lose 40 of. We have also discovered that I have a bad heart valve that is scalloped shape which is not helping the heart issue. The only information I have found to help myself is yoga, meditation, and a no processed diet, but nothing is helping.

[@ccestary2413]

Be strong man you’re helping people with your videos I will be praying for you

[@thesarcoidosissociety2109]

Thank you very much, it’s not easy I think I created something bigger than what I can handle here. I’ve started many businesses over the years, ran two at the same time while having a family and all. But since my second flare up in 10 years I’ve noticed my mental health has changed and my energy levels are less than what they used to be. I won’t be able to build this to where I proposed it to be till I get some close help.... but none the less I haven’t done much in past few months but will try much harder very soon...

[@kashandrahall9631]

Thanks for the video, my mother has this disease, she's 58, she was diagnosed about 10 years ago and she struggles with it every day. It's difficult to see her struggle just to breathe, it breaks my heart. Like you said doctors don't know much about it. They told my mom that it was a "swamp" disease what does that even mean. My mom is always on prednisone and antibiotic. She gets pneumonia every few months or so. Thanks for being brave and sharing your testimony!.

[@thesarcoidosissociety2109]

Ka'Shandra Hall thank you for sharing, I’m sorry to hear about your mothers condition. I’ll give you some advice that most of us can all agree on. Our families and partners don’t understand this disease, they don’t get the internal physical and mental battle we have going on with this disease. Cause of that we tend to close up, live and suffer in silence, lonely and sad. Be your mothers best friend, her champion, give her your attention, show her you understand and care... that’s the greatest gift and medicine you could ever give her. Just be there for her.... don’t let her suffer or be lonely like most of us are.

[@Fanster-lr6jf]

In 2003 I’ve been diagnosed with pulmonary sarcoidosis. It’s no picnic in the park. It very hard to find if you’re not actually looking for it. Pray all gets better for you!

[@maureenhoward6393]

Me too! I have been Stage 4 for a while. I take so many meds every day and have some that are just to take when it is worse. It is so hard to pay for all that on disability - so that part stinks. I try to keep a positive attitude on most days, despite having a plethora of doctors. I gotta look on the bright side, even when it is dark.

[@thesarcoidosissociety2109]

Maureen Howard hello Maureen and thank you for your comment and sharing. The more time I spend on this disease the more it amazes me, the more the people amaze me. So many people have this disease and so many have some major struggles, just to survive with no end in sight. This is why I created the Sarcoidosis Society, it is to Sarcoidosis what the Cancer Society is to Cancer. Keep positive and keep focussed, we have a lot of stuff coming down the pipeline that will help people who have Sarcoidosis make the necessary changes to make the struggle more comfortable, lifestyle changes, diet changes, natural medicines etc. We hope you enjoy all this cause we made this for people like you.

[@machokoable]

@@thesarcoidosissociety2109 Hello, I also have sarcoidosis but was not told which stage it was? Am on Prednisolone on and off as I am afraid of its side effects, am completely confused, I am always tired. This diseases is not familiar with doctors, i am always coughing even with steroids, its in the lungs and arms.

[@walrusfest]

The side effects are worse than the Sarcoidosis sometimes.

[@joeguiliano4343]

I would like to give you credit man. You are strong. I just got diagnosed with this 8 months ago. This disease sucks in every way possible. I wish you the best.

[@RandomAfclips]

My wife (28 years old) was diagnosed with this. She as well has difficulty breathing with granulomas on lungs. enlarged lymph nodes. Also developed severe anxiety. She has lost all her hair and has very bad joint pain on a daily basis ( mainly hips and tailbone). it is very scary being in the unknown and with no cure in sight let alone a complete knowledge of the disease. Positive thoughts ✌️

[@thesarcoidosissociety2109]

Mr.D thank you for your comment and I wish nothing but the best for you and your wife. Everyone who has this disease has similar or completely different stories to tell. It’s amazing in a educational and spiritual way. This is why I created the Sarcoidosis Society because I wanted to unite all of us together and help one another out. Please join us on social media if you have t already... Facebook Twitter, Instagram

[@kirstiancarter928]

I’ve just been diagnosed with this disease mine is in both lungs and lymph nodes ☹️so I’m trying to learn more about this disease and best treatments. Today will be my first day of medicine prednisone.

[@almagrimaldi6495]

Me too is so hard for all this because I ready sarcoaidosis give me severe glaucoma

[@Uraharakisuke10]

how r u bro

[@arminaalexandra12]

Thank you for posting this! I suffered for months before I was diagnosed with pulmonary sarcoidosis that has affected my entire body. I appreciate you for putting this out there.

[@FiaT_LuX..1990]

Ur too pretty 🙂™️®️©️

[@Adorapitbull4]

Thanks Chad! I, too have pulmonary sarcoidisis. Well, it is trying to kick my butt again. I am going to try methotrexate. I just started today. Please keep us posted monthly on how you are doing and how your documentary project is coming along. You have a great camera presence!

[@thesarcoidosissociety2109]

Thank you very much, and I am so sorry for not posting more.. I created this a year ago with the best of intentions but during that time I was off work for 6 months recovering.... then I was offered my dream job and of course I took it. I am a project manager for a custom home builder... the dream was for me to be the builder but whatever close enough. I have been so focused on living out that dream, and come April I'm starting to build a 15k sq' mansion north of Toronto.... major bucket list check there. I'm going to be meeting with my current customer who runs an IT company, to help me do some online campaigns, to get this going. Once it is making some $$ I wanna hire someone to do things that I can't do while I focus on work. I know I made this to be bigger than I could manage, all the best of intentions but at the end of the day I have to work and need to pay bills... I have tried to find help and sure people say they want to help but don't have time or energy etc.... but I do promise I will be doing kore with this this year.... thank you for your support

[@jgeph2.4]

I’ve has Pulmanary Sarcoidosis since 2018. May of 2023 I left work due to it . June of 23 I began a strict carnivore/ketogenic diet and by September I stopped using my inhaler and back walking and exercising.

[@caseyrichardson1079]

I have been battling this disease for years. I fibally had a cardiac arrest on 2/11/2020 if it wasnt for being at the right place the right time.....I was put in line with University of Michigan's Heart Failure Cardiology team who happen to specialize in Sarcoidoisis....THANK GOD for ME....or I wouldn't be here ) God Bless

[@davidk7544]

You're handling this VERY well. Taking the time to share your experience and help others is priceless. If you do manage to travel and make a documentary, remember - you do have sarcoidosis, and you are going to trigger relapses from stress and new exposures to local pathogens. Just please do it carefully. None of us know how long we have left :)

[@AngelaHammill]

I think your children know how strong you are and i know your family must be so proud of you. ❤ Good luck in all that you do and all you will achieve. Xxx

[@marcianardello6785]

I appreciate your video, thank you and I pray you are staying safe and strong during this Coronavirus season. I have Sarcoidosis, but mine is in my Kidneys, eyes, and stage 1 in my lungs. Mine began in 2009 with all the craziness to the discovery of this illness. I'd also loss tons of weight and was at the window of death when it was finally understood what I had...same story of so many of us who has this disease chronically. Your life purpose is your calling and one that will help many...this video will bless and help many so thank you! Thank you for sharing your story and keep well my Sarcoidosis brother. God be with you and bless you.

[@hellasboy8243]

I hope ALL of you get better, I'm getting tested this Tuesday. I'm scared.

[@lifeofpolito]

I was diagnosed two days ago with Pulmonary Sarcoidosis. I am struggling to breathe so bad. My lungs are in so much pain. Most doctors are telling me that this is nothing and will go away but I honestly feel like my body is shutting down sometimes. I am onboard with spreading awareness for this. Something has to be done. I’m on 50 mg of prednisone a day a powder steroid inhaler and 2 other inhalers as well as acid reducer. I can barely walk up the stairs without not being able to breathe. This disease should not be taken lightly.

[@spcblairjaren2132]

It gets better with meds , I’m on week 2 and it’s coming around

[@vangard3415]

Mate if your doctor tells you ar okay go to another because its only going to get worse

[@SELENALEEMISS504]

thank you so much for this video my dad just got Diagnosed with it , his eyes are now getting red and his lungs are now attack in three areas ,, God Bless you hang in there ..

[@raybiggy1363]

Hi, thank you for sharing, I was diagnosed with Sarcoidosis of the lungs as well, 2 years ago. I find I have a really difficult time breathing in high humidity, some days are good and some days I can barely walk up a flight of stairs. I love working out but lately it’s been so difficult to do anything, it’s so frustrating, anyone else have difficulty more so in humility? Thanks guys!

[@MaryHartnett-t9n]

OMG yes you are the first person to mention this. Anytime I go out in early morning in heavy moist air or drink anything cold I immediately fill with phlegm in my chest and cough uncontrollably. Does this happen to you?

[@juliestraw7064]

I just saw this and I hope you're doing well. I reached out on FB. Hope that's ok. I was diagnosed with Sarc in 2007 after being misdiagnosed for several years. I'm still here, still fighting. Sending hugs 🫂 💜

[@beesknees508]

💖

[@Doug791]

I've just been diagnosed with it. It seems to by my lungs that are mostly affected. Last 3 months have been hell , I had just about all the symptoms. Recovering well now and feeling stronger every day. Not had any meds for it yet. Reading some of the comments on here has scared the shit out of me. Have to say my GP and all the nhs staff I've had to deal with have been truly amazing. I thank all of them.

[@strotherhampton6172]

Hell everyone ! Prayers goes out to each n everyone of u . I recently was diagnosed with this mysterious disease . Long journey n long pfocess sinse last yr trying to figure this out . Cant give up hope keep fighting like u never fought b4 . I have good days n bad days . Today must i say not so good . Thats okay . We must all stand stdong n stand tall . I applaud u for sharing ur video . Must say have a better understanding what's going on wit my body . UR SOILDER TO THE CORD . I'am gonna join ur afmy . God blessun ur family . Dont give up keep fighting the battle . We all must continue to fight . HEART

[@robsta5]

Great idea Chad, I only have a simple form of Sarcoidosis, of the lungs, I was on Prednisolone for a couple of years, I was weened off, I still have it but not on any meds at present. I still get out of breath easily but nothing to what you have. I live in the United Kingdom so I f you come this way , would be great to catch up with you. Stay well stay safe, all the best , Rob

[@daaiyahboyd7063]

Gm, I have really appreciated your information. You are telling it like it is. That my journey also. I can relate to your struggle. May the God of peace be with you, as you share with us. Stay strong and focused. 🙏💖

[@jeevanraj88]

I'm new to this list. Ive been jusst diagnosed with stage 4 Sarcoidosis. Best part it was unsymptomatic until 4 months ago.

[@jodiestockwell5308]

If u don't mind me asking what have the doctors said? My bf has just been told he has sarcoidosis and fibroids in both lungs and waiting to hear from specialists but we're totally in the dark at the moment and no idea what to expect

[@raybiggy1363]

Thanks so much for sharing, It took doctors almost a year to find out that I had sarcoidosis as well. I struggled to walk uphill, my energy felt depleted, very uncomfortable feeling. And yes I experience good days and not so good days. Keep up the fight, god bless.

[@beesknees508]

What meds are you on? 🙌❣☘

[@brianhuntington6347]

I have Sarcoidosis too. It's mainly been external but the last few months it has gotten much worse. I went to the Dr today and was told that it has possibly went to my lungs and heart. I go in afew days for a CT scan to see what it looks like. The breathlessness and fatigue are what caused me to seek attention. Best of wishes bud! Hope you're doing better!

[@stevenwesleygrahamrap]

I have had sarcoid since 2015 and COPD since 2018. I just went to the hospital with trouble breathing and they told me I had asthma and told me to go home SMH!! The doctor I recently saw didn't know what sarcoidosis was, in Martin Luther King Hospital in LA, smh!!

[@ernestbeard701]

I have Sarcoidosis Lungs disease . God is able.

[@JesusSaves3-16]

Your story is the mirror image of my life with sarcoid.. stay positive bro..

[@tiffanysmith7444]

Thank god I found this video this is helping me I’m going Thur the same thing

[@knowthetruth0316]

Hi Tiffany I was just diagnosed with it too

[@walrusfest]

I have it in my lungs, liver, kidney, spinal cord , skin and brain. Stage 4 in all. I was diagnosed this year. It took years to get the answer as to why I get sick all the time. The lung function loss is NO JOKE! Fighting for Disability right now, as I can no longer work.

[@kule510]

How you doing?

[@walrusfest]

@@kule510 better this month. Thanks for asking

[@TxReese]

@@walrusfest good to know you are doing better and yes it is no joke i feel like im being suffocated when i lay down to sleep.

[@cloey2658]

My husband battling this disease as well he’s fighting for disability!!’ Did you get approved yet???

[@walrusfest]

@@cloey2658 nope. I am in remission now and returned to work

[@zapkonrasp1423]

I'm stage 4 as well. It's frustrating as fuck. Had it since 2013. Not scared 2 die but I don't want 2! Don't know when my last day on earth will b.... I wish we could do somethin about this!!!

[@thesarcoidosissociety2109]

Zapkon Rasp dame but it is what it is till then find a cure which I don’t think will be in my lifetime and I’m 42... I’ve come to terms with me dying sooner rather than later, or I could get lucky and make it to 70 or Beyond. You can’t change what you can’t control so there is no sense stressing or being mad about it cause your only going to make your life worse. You have to accept what is and move on, be conscious of your health, take care of it but live life to the fullest, make a bucket list, start checking things off... be the best you can be and live the best life you can... so the day comes your in your death bed you can close your eyes and say I did the best I can I did everything I wanted, I have no regrets... I can now close my eyes and Rest In Peace. I’m great at giving advice I suck at giving myself my own advice and following it. But you can do this, you got this.

[@lynnevoss9145]

Hi, looks like they have progress with treatments since I lost my dad when I was 17 he was only 42. He had at one time taken 40 pills a day. It was very rare back then. When he passed we let them take samples of organs to help learn more to help others. So he did contribute. He never lost his sense of humor. Their wasn’t lung transplants back then. His lungs were so bad his heart enlarged to try and keep up. I wish you the best and hope you feel better!

[@shereenmusa775]

Wish u very well sir all the best 4 u health will pray 4 all the sick ppl with suffering frm all kinds of sickness especially Sacraidosis I have Mypoxia pneumonia n I have Fluid In My LUNGS n yes n also I have Fluid in my Lungs n I have to take deep breaths thank u 4 sharing Shireen South Africa

[@dortheawalters7581]

I just found out I had this and I never heard this before. So thank you for this video.

[@channelsixtysix066]

I have chronic pulmonary sarcoidosis and chronic asthma. Both are severe and disabling. I'm not well at all. I have chronic fatigue, severe weakness, and chronic flu like symptoms. I'm always very hot, having trouble keeping cool. Breathing is difficult and painful. My joints, including in my sternum, are arthritic. I was diagnosed with it in 2008. It took two years of prednisolone treatment and another two years to recover from the prednisolone. The past 12 years has left me an empty shell. I've accepted my condition, it is getting worse and there is no cure. I'm preparing for my eventual euthanasia. I'm tired and I've had enough.

[@elakemec6416]

ı hope you recover fast . so sorry . and bein g a medic ı apreciate that you share your case . thank you so much .

[@hemaverma1059]

Thank you for the video, how are you feeling now?

[@carolriley9392]

I thank you for your bravery and your goals. Im fighting something. I dont know anything but i have a left lung bacteria that remains in my lung and i am currently on TB meds. Even after i tested negative for TB. I really wish you well sir. Thank you for all you do.

[@LaurieGrypstra]

How are you doing?? I've had sarcoidosis since I was 21 I'm now 55 I know your struggle The Dr I had just kept saying that I had lung infection it took me about 4 months of getting the run around I was pretty close to death till I finally found a Dr. that knew what I had mines been in remission for about 30 years now I am so grateful for your blog not many people understand what were going threw and I'm grateful for my Dr. for finding it. I hope you feel better take care

[@SunnyPatil-r5m]

Which medication you took please guide me

[@stellaossai6920]

Please help with the medication you used..thank you.

[@saoirsehaslonglegs2313]

God Bless You,Protect U,Give u strength,health & peace.love to u & ur family..i,ve just been diagnosed.im not sure yet how bad ,but its def in my lungs,& i have constant headaches,all my lymph nodes are enlarged..& im so scared,& feel very unwell.i am also a single parent to two teenage daughters..

[@knowthetruth0316]

I praying for you at this moment. I hope things get better sir. I was just diagnosed a month ago for pulmonary sarcoidosis also.

[@checksir]

My was too I'm praying I need answers please somebody

[@ravenshadow9999]

I am also lvl4 sarcoidosis and am trying to get transplant....I am really thrilled for vids like this....thank you!

[@thesarcoidosissociety2109]

Your very welcome.. it was very liberating to finally come out with my truth and to be able to help and inspire people. Past few months have been busy and a bit depressing but I’m trying to find the motivation and energy to do more of this and some fundraising. It’s not easy doing this on your own

[@aki98jon]

Yo bro I got the Same condition diagnosed with stage 2 sarcoidosis I am on methotrexate on long term disability I feel your pain

[@mgfunkera]

I need to be on disability. I’m stage 2 & I am completely debilitated. That’s probably what they mean when they say it affects everyone differently. Did yours go through or did you have to appeal a denial? I just applied, & I know it could take 90 days, but I’m wondering what to expect in 90 days. An automatic denial? Ugh. I hope you’re okay!!

[@aki98jon]

@@mgfunkera go see your doc and tell him or her your symptoms and get informed read as much as you can before you see your doc and ask to go on long term disability . I qualified very easly pulmonary sarcoidosis stage 2 .

[@mgfunkera]

@@aki98jon Thank you so much. I applied for SSI & they’re trying to make the process go quicker.

[@micheleeacholes9968]

I been diagnosis with sarcoidosis since 2018

[@hyderebrahim6038]

I have had it since 2016, now it's back and it's worring at times. Love to chat

[@gr8ride411]

Wow! Your video reminded me of myself and my fight with this disease. I was diagnosed with Stage 4 Pulmonary Sarcoidosis in 2002. I went to see an Allergist because of the breathing difficulties I experienced after water skiing. After an x-ray he told me that I didn't have any allergies and referred me to a Pulmonary specialist that day. Within 15 minutes the Specialist told me that I had either one of two conditions going on. One being pulmonary Sarcoidosis or pulmonary fibrosis, and that her had to do a lung biopsy to confirm his findings. Shortly after the biopsy I was informed of my diagnosis, Sarcoidosis stage 4 with post-inflammory fibrosis. Since then I've been through everything and more of what you talked about in your video. I saw myself in your video and it really struck me. Thank you Chad for helping to get the word out about this insidious disease. I'm sending it to my family so they too can understand it a little more. Tony

[@thesarcoidosissociety2109]

Thank you so much for sharing that with me and everyone else, and I do apologize for not doing more with this, I am a one man show and work has been taking up all my time and energy for the past 11 months. I have been consistently sick most of the year, constant inflammation, I did quit smoking but have fallen off the wagon a few times and its kicked my ass every time, I can't even have one with out my body going into shock, and that was the only thing that controlled my anxiety, I can't take anxiety pills they make me so zombie like. Non the less, Ive been focusing on me and my career cause I do have to pay bills and all, I made this to be bigger than I could manage, but I hope to do more with it this year, and hopefully get some help cause I don't have the energy physically or mentally like I used too, and I really hope it comes back and that it is not the disease breaking me down cause I have so much I want to do in life and I am only 42 and at this rate Id be lucky to make it to 50.... but this is important to me because I want to help everyone and get the word out, tell my story etc, but its proving to be more than I could handle. So now baby steps and work my way up.... game plan in the works.

[@ghulamdastagir8879]

Which homeopathic medicines u taking brother. I have also sarcoidosis.

[@gr8ride411]

@@ghulamdastagir8879 Currently on an alternating daily 5/10mg prednisone to just maintain while controlling any flares. Been successful so far with this one pharmaceutical.

[@gr8ride411]

@@Appygo7 About ten years into my diagnosis of pulmonary sarcoidosis I experienced regular breathing issues and my ACE blood levels were over 70. My pulmonologist advised me to consider the likelihood of a lung transplant at UCSF. This really got my attention. I began making some dietary changes and added walking to my daily regimen. Since then my ACE levels have remained stable in the low 50s, and my breathing has greatly improved. I'm currently on 5mg of Prednisone daily, and sometimes alternate days. I was diagnosed in 2002 and the sarcoidosis is under control but present.

[@usscottscott2023]

I have active sarcoid in my heart. Pet scan and or mri every 6 months. 23 years I've battled this incurable disease. Started out on skin. I also have another incurable disease called Accalacia. Much worse. At least for me.

[@pauldineen1157]

I can sympathize and relate to the commenters and you; the night sweats, the loss of weight, I used to be 78 kg now 66 kg; some people don’t understand they think I don’t eat properly. I have to sleep beside an open window at night; In the mornings I often have a head ache and my eyes look swollen from a lack of oxygen. I try hard not to allow my sarcoidosis to become the number one thing in my life. I try to look forward to the fulfillment of the words in Isaiah Chapter 33: 24 “ And no resident will say: “I am sick.” and Isaiah 65:21” For look! I am creating a new heavens and a new earth; And the former things will not be called to mind, Nor will they come up into the heart”.

[@hellasboy8243]

Comforting words, hope you get better.

[@dianasotomayor5875]

Inspend my time in the presence of the Lord , this is most difficult thing i have ever been tru , My Lord is my deliverer ,My strength and Blessed hope 🙌my prayers to all here .

[@pauldineen1157]

Mucho gusto. We can prove our loyalty to God even when we don’t have good health. The Devil claimed Job only served God, because he had been blessed by him with many good things.

[@cek5897]

I had sarcoidosis since 1987Just living day by day I never found no one to help I was hospitalized for 14 days I’m just learning to to live with it getting Covid twice was the worsted but please stay safe.

[@mgfunkera]

What stage are you? I’m only stage 2 & I can’t go across my apartment without having a breathing fit. It’s scary. Sometimes I feel like my inhalers make it worse, too. The prednisone sucks, obviously. I have to go to the ophthalmologist because my eyes are going out. I can only look at screens for about an hour total a day. Everything goes white. I also had covid 02/20. I thought I was going to die.

[@jodiestockwell5308]

​@@mgfunkerahow r you now?

[@mgfunkera]

@@jodiestockwell5308 Worse than ever. I can’t really walk anymore & been on Methotrexate for 2 years. Granulomas keep spreading. Very hard to breathe & always in pain. I’m getting checked for neurosarcoidosis soon, bc I have a lot of the symptoms. Hair loss is horrible & embarrassing. It’s really depressing. I have no support system at all.

[@susanwilliams70]

Wow do I relate to your reality! I had Prednisone ten years ago & lung function tests for years. But here I am with symptoms starting to appear again.😥

[@jodysams495]

I have this disease I keep trying to work even when I'm feeling bad still go to work

[@jeremym1288]

Where does pulmonary sarcoidosis come from?

[@kalindameadows5753]

Thank you!

[@Katwinser1958]

Young man I feel sad for you. A friend of mine is on Hospice due to Sarcoidosis of the lungs and he is really bad off. He is constantly on oxygen 24/7.

[@mgfunkera]

I’m sorry for your friend. Is he stage 4, also? 💜💜💜

[@ginah.864]

Are you on oxygen? My Mom has stage 4 and has to be on oxygen. It’s affecting her lungs like you. Praying for you and others. Keep your spirit up and surround yourself with positive people. I know it’s hard. I’m a caregiver for my Mom and cry as I have seen her decline but I’m doing all I can and just enjoying the time I do have with her as God has the last say. Trust God if you have faith. I hope you do because He is helping me through this. 🙏

[@knowthetruth0316]

That's what my sister say. I was diagnosed a month ago. God does have the last word for me.

[@scentdiva]

Wow I hope you are feeling better. I see pulmonologist tomorrow. My lungs feel like they're in a vice grips. Lymph nodes swollen. Eyes burning. I hope it's nothing. I live in South Los Angeles. The air quality is deadly. Nothing would surprise me at this point. I'm prayerful and courageous.

[@thesarcoidosissociety2109]

Auntie Rizpah thank you for your comment, I’ve taken time off to deal with my mental health, working a new FT career etc. Since my second flare up last year I’ve noticed my mental health has changed and my energy levels and ambition have drastically decreased. I’m trying to find that energy again but my mind won’t let me so I’ve been trying to find someone to help me but it hasn’t been looking good so far.

[@calicowest]

I don't have Sarcoidosis but 2 of my sister's died of this disease, I took to educating myself about it. There was a support group which I attended who previously met a the Downey Hospital once a month on the last Saturday. I hope you are doing well.

[@MohammadmashkoorHussain]

I work in rolling mill but I diagnosed with sarcodosis

[@slingeries]

Brother how are you doing now?

[@intensepassion3382]

I feel for anyone suffering with this without health insurance.

[@chandrasinghful]

Thanks for sharing

[@iwuvjames10]

Tomorrow I hear if I have cardiac sarcadoisis. I was already born with complete heart block. I havent felt right for the past year, no doctor knew why till recently my cardiologist noticed i was in atrial tachycardia. Later, had my echocardiogram and I have heart failure and cardiomyopathy.

[@TxReese]

How was your outcome and how are you doing now ?

[@mamasoomaali]

My Allah bless you with healthy and happiness

[@beesknees508]

I've been thinking about this man a lot recently... I have sarcoidosis, lungs. Does anyone know if he us ok? 🙏💖🥺🍀🌍

[@mgfunkera]

First of all, thank you. I hope you’re doing well. I’m going to see if you have more videos after I write something… I’ve been misdiagnosed for too long. The last two years have been horrible. I haven’t worked in a year & now I’m out of money. I have zero dollars & a lot of bills. I can’t imagine going to a “normal” job, let alone my job as a miner/concrete hand. I can hardly walk from one room to another. I hope I get approved for SSI, because I don’t know what to do. I was diagnosed with stage 2, but it feels so much worse. Pain, insomnia, forget breathing, lesions, eyes are so sensitive to everything, moody (probably from the prednisone), nausea, forgetfulness, etc. Does anyone here belong to a group chat or something I can join? Anyone here on disability? I’m so scared of losing everything. I can’t be homeless again. I was for about 6 months after I left my abusive husband. I wasn’t sick back then.

[@hyderebrahim6038]

I was told because of my trade in the automotive industry that may have caused it

[@carlamccullum1738]

I was just told this week that I may have pulmonary sarcoidosis by my GP after 2 years of a chronic cough and I finally persisted that he order me a CT. My 2 year journey has been a nightmare just trying to get the doctors to listen to me. I was told I had allergies, nasal drainage and given allergy medicines and prescribed 3 different inhalers over the course of 2 years. I was referred to a pulmonologist finally this year after the got cough extremely worse. I was experiencing fatigue, shortness of breath, chest pains and now the sputum had became a frothy white substance instead of just mucus. Combing my hair and walking up stairs had become very difficult. All I wanted to do was sleep. The pulmonologist basically made a few assumptions and wouldn't listen to me and disregarded the findings of my abnormal pulmonary function test I did before his consult. He would could have saw then I had pneumonia but I suffered for an additional 2 weeks before going to the ER on a totally unrelated issue. Just so happened the ER doctor caught the bottom of my lungs on a pelvic CT and noticed I had pneumonia in my right lung but that wasn't even caught while I was in the ER after a chest xray. I received a call hours later at home. I was put on a Zpac and Prednisone. After that treatment, the cough persisted. I scheduled a follow up from the ER appointment with my GP and I requested a CT after him telling me again it was due to nasal drip and me telling him no it's not. I told him this feels different. He agreed to order the CT. Well behold the CT showed I had inflamed lymph nodes along my bronchial tube and spots in my right lung he is assuming is sarcoidosis. He has agreed to refer me to a different pulmonologist to confirm diagnosis. Until then I am on a 5 day steroid to see if it helps with my chronic cough. My additional symptoms have been insomnia, night sweats, brain fog, fever, some joint pain and swelling, blurred vision (eyes are getting worse), and tinnitus. I pray after 2 years it is not beyond manageability.

[@jodiestockwell5308]

How are you?

[@SilentGoat666]

Are there any welders here who has been diagnosed with sarcoidosis? I have sarcoidosis after i started welding. I just want to see if anyone else is like me too?

[@SumanMukheja-jp1mh]

"I've been using Planet Ayurveda's supplements and I'm thankful for the relief they've brought"

[@kianamieldon3638]

My dad is in his 70s and has lived with Sarcoidosis since he was diagnosed in his 20s or 30s. He’s currently at 60% lung capacity, but was told something by a doctor that’s making him lose hope. I know a lot of people here are also dealing with sarcoidosis, is there any advice or way I can help my dad get some hope back?

[@intherockies]

Google things to do for sarcoidosis. There are foods and vitamins that can help. He needs to stay away from highly refined foods, sugar, white pasta and high fats. Limit red meats and cheese. If you eat meat then make sure you eat lean meats. Stress and illness can make the condition worse so try to decrease the stress as much as possible. In colder climates it makes it easier to breathe. Less than 5% of people die from sarcoidosis, know that fact can help him to get through each day. Remember it can go into remission at times.

[@njnavarro2004]

Make sure he's not taking any drugs, nutritional products or eating any foods e.g. Mrs. Grass Noodle Soup, that contain silica (i.e. silicon dioxide). There are some nutritional supplements that can help prevent or possibly even reverse fibrosis (scarring). e.g., taurine, niacin (a form of vitamin B3), omega-3 fatty acids, astaxanthin, zinc, magnesium, pyridoxine (a form of vitamin B6), citrus bioflavonoids (e.g. Natural Factors brand), etc.

[@cool-858]

What were the tests which confirmed ua condition?

[@jyotikakumari7319]

Hey I also have sarcodois . Don't know which level.i never took any steroids as I was scared of side effects.i am treating myself by doing meditation and paranyam everyday. I am on. homeopathy.

[@piyushmishra1917]

Please take steroids otherwise it will progress don't wait till it gets you sick completely

[@jones2277]

@@piyushmishra1917 for milder cases steroids may not be necessary.

[@JM-nn6il]

I’m new to this disease and I’m guessing I’ve had it for the past 3 years when my symptoms started. It’s a very frustrating condition. I’ve had to cut back and cut out many people I just don’t have the energy for anymore. Think self care is the most important gift you can give yourself. COVID has meant such a limited health service and I’ve been so tired of my appointments being cancelled I’ve decided to take control of this disease myself. I’ve started Ashwagandha, Cats Claw, Cinnamon Milk every night plus a mainly Vegan diet. Stay strong ❤️

[@anoopvalath4662]

Plzz try Google Ayurvedic treatmentment Kerala. Kerala is the place where Ayurveda originated. Am sure it can help for sure.

[@knowthetruth0316]

I lost so much weight. My eyes are blurry. Use to drive for a company and had to stop driving. Forget things . If you are diagnosed with lung sarcoidosis can you have symptoms from Nero sarcoidosis or skin sarcoidosis

[@mgfunkera]

Yes, I have pulmonary & have lesions on my right arm & get them on my legs. I also started drooping on one side of my face, like Bell’s palsy.

[@yvonnedavis7391]

I am scared. I’m 24 years old and I was diagnosed with level 4 sarcoidosis. Bec it’s in my lungs and it’s effecting so much and I have a 1 year old and I’m afraid to die or leave my son who I just had year old ago. I only have one kid.

[@MARKHERE-pl5gp]

Are you there?

[@jodiestockwell5308]

How are u doing now?

[@siobhonmason3434]

My child 24 and is now suffering too I hope you’re doing better now

[@kule510]

Do you have a go fund me to help you with your documentary?

[@Kev-N42000]

I have severe stage 2, and it sucks

[@tonealli5151]

Does anyone with this disease feel like when you speak, fluid is in your airway which prevents you from being able to speak?

[@drericambanks4432]

Omg the wet lung! I hate it. When I drink water sometimes it feels like I’m drowning

[@rehanacical8261]

I have stage 4 and I am struggling with pulmonary sarcoidosis and pulmonary embolism also it’s very hard to manage it’s very stressful 😌

[@jodiestockwell5308]

Do u mind me asking how long you've had stage 4 please

[@Mayranos]

Have you tried water fasting? I hope you heal, it's a disease that comes and goes for "no reasons"...

[@thesarcoidosissociety2109]

No I haven't tried that yet, what is involved and the results? I know for one I am horrible with drinking water as it is, so thats probably a good reason why I am always sick LOL

[@Mayranos]

@@thesarcoidosissociety2109 Well water fasting is great, because it is anti-inflamatorry naturally... This is what iam doing for my sarcoidosis... I'de advise you to start gradually, and talk to your doctor about it, many people have had great results, at your stage, I'de say try water fasting with a corticotherapy i've read that in 80% of cases the patient had a total recovery. Personnaly i've done a 29 water fast, it just way too long, but the best result are between day 4 and 14, you could do a 5/2 regimen, where you fast for 5 days and feed for 2, just watch videos about it, and type water fasting for sarcoidosis, you should come across the studies, As I said, I hope you heal yourself, and that you'll have many more years with your family!

[@thesarcoidosissociety2109]

@@Mayranos I will look into this thank you so much...

[@FarmersforTruth]

I just got diagnosed

[@SlotstheMetaphysicalwa]

Im having this issue and coughing up phlegm all day they say its lung cancer no one tested me for sarcoidosis 😢😢😢

[@shannonollis3821]

If they haven't done a PET scan and biopsies yet, they shouldn't tell you that you have lung cancer. I hope you get answers soon. I'm in the midst of a Sarcoidosis diagnosis (it's either Sarcoidosis, Lymphoma, or Castleman's Disease for me... obviously I'm hoping Sarcoidosis). On PET scans (and others), Sarcoidosis mimics Lymphoma. I have Mediastinal and Hilar Lymphadenopathy (massively swollen lymph nodes). My lung function is poor. My PET scan revealed numerous reactive lymph nodes plus reactive areas of my liver, heart, and lungs. One spot on my lungs was exceptionally concerning. During my bronchoscopy the following week, they discovered granulomas in/on my lungs (one in that bad area). Test results are still coming in (not all are back yet) and while I spent about a month being super freaked out thinking I have cancer, it's looking much more like Sarcoidosis. I'm no doctor, but I'm sure your doctors will find out really soon whether or not you have lung cancer... and they'll also know whether or not you have Sarcoidosis. There's no way they'd miss that given all of the blood labs, scans, biopsies, etc that you need(ed). Maybe you're not being tested for Sarcoidosis because of testing they've already done? I hope you have neither cancer nor Sarcoidosis. Hang in there. I know hanging in there is tough (the waiting game in between tests is brutal), but until you have answers, try your best to face it with a warrior mindset so you can fight whatever battles lie ahead of you. That's what I'm trying to do. I feel like I'm dying, but I'm ready to fight. Best Wishes.

[@tarshahuff3181]

Please know that sarcoidosis IS a hereditary disease. My mother, uncle and sister all have sarcoidosis. NIH in WDC suburbs has studies going on and are looking for participants.

[@calicowest]

Sarcoidosis isn't heredity, it's exposure to something.

[@oshea2300]

We all have a God-shaped void, that we try to fill with counterfeits that only Jesus Christ can fill.. he wants a relationship and fellowship with us. He loves us and wants to spend eternity in heaven with us. We need to be sorry to God for what the Bible says is sin. Only once we realize we're lost can we be saved by trusting and the life, death, burial and resurrection of Jesus Christ. He shed his blood for us taking our sins upon him, and he gives us his righteousness when we put our trust in his finished work on the cross, asking him to forgive us and save our souls from hell.

[@serenitynow288]

Amen!

[@Iam_Ang]

Pray for increased faith while asking for 2nd and 3rd opinions.

[@abhishektripathi4171]

Hey how are you now???

[@suzanneholzman9548]

I'm 72 years old and I have sarcodosis of my lungs 🫁