They found something growing in the lungs

[HABS93]

Hang on in there mate, been following your story and you’ve been such an inspiration with your positive attitude throughout it all!

The good thing is you’re still young so you can fight this and I genuinely think you can beat it. Everyone in here is clearly rooting for you!

Thank you. I really appreciate that. I never knew I inspired people. I read others stories on here and they make my journey a cake walk. I just started this thing so I gotta focus. It gets overwhelming

 

[YippeeKi YOW !!]

@HABS93

I just started this thing so I gotta focus. It gets overwhelming

The secret to anything that overwhelms or terrifies me is to take it in tiny, tiny bites. What's the smallest, least stressful and energy consuming thing you can do right now that will lift you out of yourself for just a moment? It doesn't matter how trivial it is, the trick is to pull yourself out of the pit, if only for long enough to know that there is an "out-of-the-pit", and from there, to figure out what your next step is, whether a change in medications, or a change in treatment direction. You could talk to you Dr about your state of mind on the prednisone, and stress that you don't want an SSRI or ad SSNI, you want to consider a whole other way to go that will effectively knock this down, either in conjunction with the prednisone or otherwise.

You're going to be OK. Sarcoidosis is light-year-miles away from lung cancer, so there's that .....

 

[Zebra]

Hi, @HABS93!

I just stopped by this thread to see how you are doing.

I read that you are concerned about having to go back to work. I am ignorant about Canadian social services, but I'm wondering if you are eligible for any type of short-term or long-term disability?

I worry about you having to go back to work before your Sarcoidosis is even in remission.

I know you've only been taking the Prednisone for a short while, and you have yet to feel a difference.

I just want you to have a fighting chance to get better and I'm wondering if going back to work can be postponed until you are well?

Wishing you much peace!
Z

**Please don't feel you have to spend any energy writing me back.**

 

[YippeeKi YOW !!]

@HABS93

I just want you to have a fighting chance to get better and I'm wondering if going back to work can be postponed until you are well?

I agree with @Zebra .... is there any financial support program where you are that might be able to help? WIth a sarcoidosis dx, it shouldn't be hard to qualify.

Sending you warm supportive vibes and 's

 

[HABS93]

Haven't even thought about financial support. I'm sure I'm eligible for something. Today was a bad day. The heart feels a discomfort that Neve goes away from the Prednisone. I finally took a edible and definitely was not having fun with the heart. It was a hard hit. It's only been 7 days so I'll go Monday to see him. Going to delay going back to work.
Ive read 100 stories of sarcoidosis and it basically is chronic fatigue syndrome but you know what's causing it but not why or how it works. Usually affects the lungs eyes and heart. Can affect any organ randomly. Probably should get disability but then I loose my spot as a chef at my job

 

[Jyoti]

@HABS93 -- I am so sorry that the prednisone is making you feel even worse, it seems. I am glad you are going back to see the doctor on Monday; maybe there is an adjustment that can be made?

And in the meantime, I applaud your decision to delay returning to work. I was a chef and owned a couple of restaurants when I was your age and it was so hard, so much fun (when it wasn't crushing) and so consuming. I cannot begin to imagine doing that kind of work with sarcoidosis or ME/CFS, even of the mild variety. If you are able to get disability, let's be optimistic--you'll be back on the line one day, when you have the stamina. It's not forever. For now, give yourself the space to work on getting the treatment you need and trying to get better--if disability can make that space then it really might be helpful in the bigger picture.

Hoping and praying that tomorrow is a better day for you...and for all!

 

[YippeeKi YOW !!]

@HABS93

If you are able to get disability, let's be optimistic--you'll be back on the line one day, when you have the stamina. It's not forever. For now, give yourself the space to work on getting the treatment you need and trying to get better--if disability can make that space then it really might be helpful in the bigger picture.

@Jyoti is absolutely, totally, right on !!!! I dont know what area you're in, but in N.Y., chefs of the line are in dramatically short supply, and that doesn't look to end soon. So know that you'll most likely not only be able to get back to work, but under better circumstances and with higher pay.

Hang in !!! We're here with you for as long as it takes.

 

[HABS93]

The worst part is I can't enjoy anything. Just rewatching lost and can barely enjoy it. Heart just feels like it's working hard for the medication and the weed makes this 10x worse so now I can't even enjoy the weed. I'm just literally alive but not there. I have to call my doctor because from before diagnosis my eyes were blurry and sensitive to light which is a Hallmark for sarcoidosis in the eyes. My lung specialist was confident in six weeks of Prednisone it would be done. Day 8 I've adjusted Abit to it but Shakey and heart feels like it's working overtime. I'm honestly just so lost . I really appreciate the support because I don't know how I'm going on anymore.

 

[Jyoti]

Let me offer you a hand, @HABS93. I am 'getting on' now, but from what I have gathered of your past, we would have had a lot in common if we were born contemporaneously. I know the restaurant world, I drank and drugged with the best of them. (Or the worst.) I wanted to and did live life at full bore, and I can only imagine the challenges that this illness has brought you, the drastic changes in your life, your identity and your vision of present and future. It is cruel.

And I feel a strong desire to support you and encourage you in this in whatever way I can. I think you have a shot at getting better, but obviously it is going to get worse before it does get better. We know that now, unfortunately. But...don't give up.

I understand the depths of despair and hopelessness that descend when the body and brain hurt and don't work and really--seem to be failing us altogether. That, coupled with the lack of truly trustworthy medical care, the feeling of trying to navigate such high seas basically blind, is also terrifying at times. Which, at least in my case, adds to the feeling that this is a hopeless and pointless journey.

I don't know quite why, but I want to mention that my 23 year old daughter just learned that a third person in her life took their life this week--this friend leapt from the Golden Gate Bridge. I guess I have been thinking about hopelessness today, seeing how bereft my daughter is, thinking about how much we matter to others in our lives even when we cannot imagine what in hell we have to offer. I am sure that there are people who love you and want you to make it, just as we do here. Sometimes I find that reality unpleasantly overwhelming--when I remember that others do count on me, despite the limits on what I can do/be; at other times it is the very thing I need to keep myself going, breathing, trying to find a way to actually live with this beast.

I'm just literally alive but not there.

I know.


PM me if you want to talk.

 

[HansG]

Hi @HABS93, if sarcoidosis and cfs/me isn't connected somehow, it is very very unlikely you have both. Focus on that one you can treat and you will see. It will defintely takes time, but its worthy.

My pulmonal sarcoidosis was treaten for several months with a cortisone spray. (so steroids, too) That was 9 years ago. Since then, I was once a year for a checkup. It never came back.

Maybe in your case it takes longer, because you have been ill longer than me or because other organs are affected. Maybe you have to find another treatmeant. Maybe one treatment you have to take lifelong. But anyway, sarcoidos is treatable. The chances are very good. Just hold on.

 

[Zebra]

Hi, @HABS93,

I know the last time you posted you were feeling very low.

I think about you quite often, and I know you can (and will) get through this. How do I know?

Here's how:

Because YOU are the strong young man who did NOT listen to the first jack@$$ doctor who tried to convince you that you "just" had anxiety, and that your very real symptoms were all "in your head."

Because YOU found this forum, considered ME/CFS as a possibility, and began working with a CFS doctor and trying different treatments.

Because YOU listened to what your body was telling you, persevered with medical testing, and your medical case was finally cracked!

YOU made that happen @HABS93. YOU.

And now you'll become just as educated about Sarcoidosis as you were about ME/CFS. You'll make sure you get the best treatment possible, and I have no doubt that in the future you will provide support and guidance to anyone suffering from chronic illness, especially those awaiting a diagnosis.

You've got this!

 

[YippeeKi YOW !!]

@Zebra

And now you'll become just as educated about Sarcoidosis as you were about ME/CFS. You'll make sure you get the best treatment possible, and I have no doubt that in the future you will provide support and guidance to anyone suffering from chronic illness, especially those awaiting a diagnosis.

Lovely, thoughty post !!!

 

[HABS93]

Hi, @HABS93,

I know the last time you posted you were feeling very low.

I think about you quite often, and I know you can (and will) get through this. How do I know?

Here's how:

Because YOU are the strong young man who did NOT listen to the first jack@$$ doctor who tried to convince you that you "just" had anxiety, and that your very real symptoms were all "in your head."

Because YOU found this forum, considered ME/CFS as a possibility, and began working with a CFS doctor and trying different treatments.

Because YOU listened to what your body was telling you, persevered with medical testing, and your medical case was finally cracked!

YOU made that happen @HABS93. YOU.

And now you'll become just as educated about Sarcoidosis as you were about ME/CFS. You'll make sure you get the best treatment possible, and I have no doubt that in the future you will provide support and guidance to anyone suffering from chronic illness, especially those awaiting a diagnosis.

You've got this!

I wish I had more energy and feelings to respond to this. All the support you guys have given me is part of the reason I'm still here and pushing through. It's going to take some time but like most of us we pray that one day we all get reduced symtptoms . No matter what happens I'll always support and help anyone in similar situations because you need support to gett through this

 

[Hip]

Sarcoidosis is the illness Trevor Marshall has, and he developed his Marshall Protocol treatment to treat it. His website claims a 75.8% success rate, but I am not sure what he defines as "success".

 

[YippeeKi YOW !!]

@HABS93
You just keep punchin', yes? Dont give up, don't give in, keep rolling with the punches and fight thru this. You're going to be OK.

If you can manage it, check out @Hip's rec re the Marshall Protocol treatment for sarcoidosis. You never know what little bit here, little bit there, will put together the protocol that will work for you, and Hip is terrifically well-informed. Definitely worth a look.

Sending you a warm hug and a "there-there". And a solid shoulder, should you need one .

 

[HABS93]

Sarcoidosis is the illness Trevor Marshall has, and he developed his Marshall Protocol treatment to treat it. His website claims a 75.8% success rate, but I am not sure what he defines as "success".

Interesting I didn't even know this existed. Thank you so much. I don't understand the no radio radiation part ? Like no wifi ? I'm surrounded by it :/ .
And @YippeeKi YOW !! I'm never really down and out. I get back up Everytime . I learned from you guys how to keep getting back up

 

[Hip]

I don't understand the no radio radiation part ?

That's Trevor Marshall's latest hobby horse, toying with the idea that radio waves may affect the immune response. This radio wave thing is not part of the original Marshall Protocol, so probably not worth paying too much attention to. I've got WiFi in my house, but as a precaution I've located the router at the other side of the house away from my bedroom and where my desktop computer is (my desktop is connected the router by cable, so no WiFi radio waves). But other than that I am not too worried about the WiFi.


The Marshall Protocol just involves taking a common blood pressure drug called Benicar, which Marshall says activates the vitamin D receptor inside the cell, which in turn activates the cellular immune response to kill intracellular pathogens living within the cell. Sarcoidosis is linked to intracellular infection with Mycobacteria.

 

[Mary]

Hi HABS93 - grounding or earthing might help you with inflammation. (See https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4378297/
I’ve been doing earthing in the form of sitting outside with my feet on the cement by my mobile home, aiming for an hour a day, for about 6 weeks. It has helped me with sleep, much to my surprise. I live in the high desert and literally have no dirt or grass by my home; however, cement is supposed to be okay for grounding or earthing if it’s not sealed. The above article contains thermal/infrared pictures showing reduction in inflammation after 30 minutes of grounding - they’re pretty impressive.

One of my sisters has rheumatoid arthritis. She’s probably considered a mild case - she takes 5 mg. Prednisone and a couple Advil every day and that’s it. But sometimes the pain can get bad. Anyways, twice now when she was in a flare and the pain was increasing, she stood outside her home in the dirt/grass for half an hour (playing her guitar ) and each time was very surprised to find that by the end of the half hour her pain was almost gone.

After getting good results with sleep after sitting outside, I ordered a half-size grounding sheet for sleep, but it did nothing for me, although there are a lot of reviews by people who had good results. I am going to try a grounding wrist band and see if that is any more effective.

Some people have reacted badly to earthing products used indoors. This article talks a bit about why these products are not always a good idea: http://www.emfwise.com/earthing-mat-dangers.php

So I can’t advise as to the safety or efficacy of grounding mats, etc., though maybe someone else here can. But I’m going to experiment with a grounding wrist band and if I have adverse effects, will stop it. It’s recommended you check your outlets before using grounding devices with an outlet tester (e.g., https://www.homedepot.com/p/Power-Gear-3-Wire-Receptacle-Tester-50542/206212329 )

I have no idea if this would help with sarcoidosis, but just wanted to throw it out there for your consideration - at least you can try it for free!

 

[HABS93]

That's Trevor Marshall's latest hobby horse, toying with the idea that radio waves may affect the immune response. This radio wave thing is not part of the original Marshall Protocol, so probably not worth paying too much attention to. I've got WiFi in my house, but as a precaution I've located the router at the other side of the house away from my bedroom and where my desktop computer is (my desktop is connected the router by cable, so no WiFi radio waves). But other than that I am not too worried about the WiFi.


The Marshall Protocol just involves taking a common blood pressure drug called Benicar, which Marshall says activates the vitamin D receptor inside the cell, which in turn activates the cellular immune response to kill intracellular pathogens living within the cell. Sarcoidosis is linked to intracellular infection with Mycobacteria.

Absolutely fascinating. I was reading the vitamin D receptors on his site. Quite a great read. Do you think I should try this while on Prednisone right now ?

 

[HABS93]

Hi HABS93 - grounding or earthing might help you with inflammation. (See https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4378297/
I’ve been doing earthing in the form of sitting outside with my feet on the cement by my mobile home, aiming for an hour a day, for about 6 weeks. It has helped me with sleep, much to my surprise. I live in the high desert and literally have no dirt or grass by my home; however, cement is supposed to be okay for grounding or earthing if it’s not sealed. The above article contains thermal/infrared pictures showing reduction in inflammation after 30 minutes of grounding - they’re pretty impressive.

One of my sisters has rheumatoid arthritis. She’s probably considered a mild case - she takes 5 mg. Prednisone and a couple Advil every day and that’s it. But sometimes the pain can get bad. Anyways, twice now when she was in a flare and the pain was increasing, she stood outside her home in the dirt/grass for half an hour (playing her guitar ) and each time was very surprised to find that by the end of the half hour her pain was almost gone.

After getting good results with sleep after sitting outside, I ordered a half-size grounding sheet for sleep, but it did nothing for me, although there are a lot of reviews by people who had good results. I am going to try a grounding wrist band and see if that is any more effective.

Some people have reacted badly to earthing products used indoors. This article talks a bit about why these products are not always a good idea: http://www.emfwise.com/earthing-mat-dangers.php

So I can’t advise as to the safety or efficacy of grounding mats, etc., though maybe someone else here can. But I’m going to experiment with a grounding wrist band and if I have adverse effects, will stop it. It’s recommended you check your outlets before using grounding devices with an outlet tester (e.g., https://www.homedepot.com/p/Power-Gear-3-Wire-Receptacle-Tester-50542/206212329 )

I have no idea if this would help with sarcoidosis, but just wanted to throw it out there for your consideration - at least you can try it for free!

Thank you so much for that. I never really realized maybe it's not helping at all. God I'm so addicted to my phone and wifi it's probably just adding on inflmmation . So I should out my phone in my house take a book and read on the concrete in my backyard for half an hour each day ??