The GOOD NEWS thread...

theGardener
11 Recommendations

Hello all, theGardener here.

I would like to start a little experiment, I would like to start an ongoing thread of GOOD NEWS.

Now as we all know, we primarily b*tch and gripe and moan about our disease on this site and that is perfectly fine, absolutely warranted, and, indeed, helpful. We have the right to complain, and this is the place to do it. It is no secret that our symptoms range from annoying to terminal. That is accepted fact.

But there is also GOOD NEWS out there, and we ourselves, as well as newbies deserve to hear these brief stories, as they are not often offered up. It helps to know that Sarcoidosis is not always a death sentence nor is it always debilitating. There are many shades of Sarcoidosis, this thread will demonstrate the lighter side of owning it. There is no shame in clinging onto any little bit of information that might give a little hope. Hope is the shield we bear in our struggle.

I would ask that posters relay GOOD NEWS about dealing with their illness; such as, getting better, feeling better, returning to normal activities, leading a normal life, leading a vigorious life, showing how a positive attitude works, remission experiences, etc.

No cheating please! No disguised griping such as "My head exploded, but at least I don't have to worry about combing my hair!" Keep it light and keep it brief.

If you think this thread is kind of pollyanna, it is. So save your gripes for other threads. This one is designed for hope! I'll go first:

My name is theGardener. I have had Sarcoidosis on and off since my twenties. The worst my symptoms have ever been have completely resolved to normal. I would say that I only have an occasional flare-up of minor symptoms on occasion and I lead a normal life otherwise. I do not use, nor have I ever used anything other than aspirin or ibuprofin, even during the most debilitating major flare-up. I deal with issues as they arise, and I refuse to let Sarc dictate the terms of how I live my life. A light heart offsets a heavy burden. "The Lord is my light and my salvation, whom shall I fear?" God bless us all.</i>

Next!
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68 replies

Audreymac

I was diagnosed with Sarc in 2004, I take nothing for Sarc,but I do take meds for pain when I have Fibromyalgia flares. I think the Good News is that TG is back and making us take a good look at ourselves. TG makes us laugh until we cough( I slipped that one in).LOL

I am so glad to have a loving husband for the past 30 years,I think he feels every pain I may have. I have a wonderful 23 year old daughter who moved back to Wisconsin just so she could be near if I needed.her.

I love them both and I am so glad to be Mother and wife to two amazing people. I always say Sarcoidosis is living with me, I am not living with Sarcoidosis.
Audrey

snotty

Hey fellow sarc-n-buddies,

You've heard it on this site a HUNDRED times,,"Hi I'm new here ,, My doctor told me at first that I had lymphoma but then after a biopsy...."

I too started out this way last summer,, After my oncologist freed me from his icy grip, I was intoduced to a pulmonoligist . He looked at me,,, then at my chest x-ray,, then at me again and said that,,,,," I was the 2nd. worst case of Sarc that he had ever seen in his 25 years of practice!The only case worse than mine had to have a lung transplant."

I was discouraged to hear that because I have ALLWAYS strived to be NUMERO - UNO.....HA!

Anyway, He told me that we were gonna be BFF (best friends forever) and that I had Lymph nodes the size of my heart and tumors in my lungs(two on the right and one on the left.) He told me that he would start me off slowly with 20mgs. of oral pred. to see if I responded to it. ( I guess no rush here? Maybe it's my H.M.O.)

SO ONTO THE INTERESTING PART,,,,,

Three days before I told anyone but my family ,,,God woke my churches music director up and hold her that," satan had formed a weapon against my wife and I .. and to pray.." She did, and when I asked for prayer thay following Sunday She told me what had happened in her prayer time. ( Allright so I'm on the devils radar..)

A couple weeks later almost the same thing happens but this time it was with a missionary that had come to our church for only a couple days last year.(this guy barely knew my name much less my situation.) He had the Lord wake him up and said " Pray for Scott..." He didn't know what to pray for so he called the church to try to get my tel. number. So he gets the number and calls me. He tells me how much the Lord loves me and sees what is going on.. ( Now even better.. I'm on GODS radar!! ) As he prays for me he says write this down,,this is what the Lord says to you... " WHEN YOU GO BACK TO THE DOCTOR THAT IS WHAT HE IS GOING TO SAY TO YOU,,,, WOW!!! I DIDN'T THINK THE MEDS. WOULD WORK THIS WELL.."

I went back 6 weeks later after having a new chest x-ray and breathing tests.. The doc. pulled up the before and after x-rays and SAID EXACTLY WHAT I WAS GIVEN 6 WEEKS BEFORE ... "WOW!!! I DIDN'T THINK THE MEDS. WOULD WORK THIS WELL... AND THIS BREATHING TEST CAME BACK 100%. NOW WE HAVE A BASELINE FOR THE FUTURE IF YOU EVER RELAPSE..." (thanks???? I guess doc..)

I guess it's hard to get more positve proof that GOD's love for us is GREAT!!

My chest x-ray was TOTALLY CLEAR, no tumors,, no swollen lymph nodes..etc...
The only thing I have left is the achy feeling and I guess I can't complain about that??GARDENER??? can I???? LOL....

GOD IS GOOD

Snotty

Zen_nonna

My good news is I do not really know what flare ups and outbreaks are, so I must not be having them. I was first diagnosed in 1990 but it was called Beck’s scarcoid after needle biopsy for a lump and I was given no treatment and no medication. I never heard the sarcoid word again until early 2007. So that is good news also. I am not on any meds for sarcoid so that is good news too. I have seen ENT, and plum. sarc specialist. So while I know I am not cured it must be dormant. More good news. I just good a job offer for part-time job More good news. My husband is very supportive more good news. (I am 63)

I know I am not cured but I will take the good stuff

Cora42

First of all let me say how happy I was to see you back online with your witty comments and stories, they make us all feel so much better. My good news is that I have given up taking all but two medicines for my sarcoid and have never felt better, no depression, very little neuropathy, losing some weight and in general in a much better mood.

I think this is a great idea to write what the good news is for a change I think it might help some of the newbies know that this disease isn't all doom and gloom and I should know as I was given only a 10 years to live. Well that was 4 years ago and I feel better now than ever and think the doctor was probably wrong again lol. I even hope to go see my daughters this summer as one of them just got back from the Middle East safely and the other should be back from Germany soon enough.

Take care all and I hope everyone has something good to share.

Cora

NanM

OK - here goes -

I am finding that an anti-inflammatory diet seems to be helping me. I started the diet January 1 with the idea that it could not hurt and could maybe help. In any case, I would be eating in a more healthful way and it would be something I could do for myself.

Imagine my surprise when the constant chest pain I had been experiencing slowly but surely disappeared. The pain was clearly sarcoid related due to the granulomas in the right side of my lungs. It had been bad enough to bring me to tears and keep me up at night. It is now gone. I think it is due to an overall reduction in inflammation due to the change in diet. In any case, I will gladly, gratefully, take it.

If you want to try the diet, I generally follow the anti-inflammatory diet proposed by Dr. Andrew Weil in his books ("Healthy Aging" and others). I try to only eat animal protein (meat) once a day and small portions - olive and canola oils - fish - lots of veggies and fruit - whole grains only - little sugar if any - low fat milk - no butter - cheese in moderation. This is the way I have addapted Weil's diet to me. I am finding this not hard to keep to and I feel better in general.

krkinman

Thanks TG for this discussion link, I wondered where I was going to talk about my campling trip. I just returned from trip with 8 boys scouts to a state park here in OK. I was a little worried since we have not been camping since I have been diagnoised but it was a great weekend. It was cold during the night about 28 degrees and around 60 during the day. The boys did about an 8 mile hike, I chose to stay at camp and make bake potato soup. We sit around the campfire and told stories about injuries that have happened to us, boys sometime pick strange subjects. It was a great weekend and I am really glad I went. My sarcoidosis camped with me and I had a few problem breathing in the cold night time air and a few musle issues during the day. Our camp seemed to be a long way from the bathroom, lol, in that cold night air. We general do a camping trip every month so I feel that I should make it to all of them. The next challenge should be the week long summer camp in June but the other adults have already told me they will help in any way possible.

I am Kelly, I have three boys, two dogs, Diabetes and Sarcoidosis.

JanetGrant

I've had a rough time since 2002. No diagnosis till 2004. I take one day at a time & do the best I can. Had a very productive weekend (amazed even myself ) & today feels like a good day, a very good day................Thanks, TG.............JG

gerrind

Okay, I can relate some good news to all.

Unlike the Gardner I have had to take Prednisone. I actually on my own took Ibuprofen which helped but my flare up was so bad, that I needed stronger meds. After 3 months of the prednisone and the weaning down process was completed, I have yet to relapse, and feel normal again. I do take a very low daily dose of ibuprofen because I have aches/pains in my fingers, hands, feet, and ankles. I have been told I don't have arthritis so I figure maybe its due to the sarc. It also could be because Im getting old, I hit my 40th B-day soon. Regardless I really do feel pretty good and am returning to my normal life. I feel able to start walking/running, and maybe even hitting the gym. Its just hard to do when you have two babies at home.

Anyways, point being you can get back to normal. G

RuthfromOz

I was diagnosed with Sarcoidosis in January 2001, with uveitis in both eyes. I was immediately started on prednisone drops, which made driving and working almost impossible, so I used the sarcoid as an excuse to get out of a declining work situation. It's good for some things, isn't it?

The drops made my sight clear up, but within a couple of months a neurologist diagnosed the "funny spells" that I had been having for years as epilepsy, and as soon as she put a name to it, I had to give up my drivers license. Funny, I'd been having these funny turns for years, even driven while having them and never had a problem, but as soon as they had a name I was considered a danger on the road! So, I couldn't find a new job within walking distance, so I couldn't work until we moved 2 years later.

Once we moved to a place with decent public transport I was able to find work, and have worked almost continuously ever since. Any time out of work was between temp contracts.

My good news - I may have used my sarcoid to get me out of work, but it's never stopped me from having a job or keeping a job.

Sarcoid_Scott

Thanks TG for starting this thread. I know that Sarc is a strange and frightening condition, especially when you first find out about it. Most of us have had the scare of possibly having cancer, then after going through just about every medical test imaginable, we find out that we have this strange condition for which there is no cure and can be fatal.

But the good news is that in many cases, Sarcoidosis is only a minor annoyance in our lives.

Such is the case with me. Today I probably would not know anything about Sarcoidosis, had I not had a short bout of swelling and soreness in my ankles last July. When it didn't go away immediately, I began the journey over the next couple of months to the discovery of my condition (Pulmonary Sarcoidosis). The swelling and joint soreness that I initially experienced has long since gone away, and I am symptom-free most days. Like theGardener, the only medication that I have taken for Sarcoidosis is ibuprofen and naproxen.

I feel very blessed to be able to continue to live a pretty normal life. I know that many others with Sarcoidosis are not so fortunate, and I certainly sympathize with their daily struggles. But the good news is that many of us can continue to live normal lives.

Scott

lfergie46

I have cronic sarc. Yes I hurt and I am on pred.
I made up my mind to get out of this house and do something. So I volenteered last week to help out one day a week at the hospital. I told them I had sarc. and wanted some kind of a job that I could sit at. They were glad to have me. She was also glad that I wanted a sit down job. She said everyone wants to deliver paper, flowers and cards. So there is things out there we can do even if we are having a bad day. I won't hurt any worse sitting at the hospital then I will at home sitting in my chair. Besides it might get my mind off of my aches and pains for a little bit.

dmackwell

I had significant illness all winter last winter. Finally went to the doctor thinking I had pneumonia.
SO they do an x-ray. He tells me I don't have pneumonia, but you may have bigger troubles.
they do a ct scan that confirms I have lung,lymph and back(all over) tumors.
They do a pet scan and tell me I most likely have Lymphoma.
I go to a oncology doctor where I get my first good news that I should exercise as much as I can before treatment. At time I wasn't getting any due to a 6 mos old baby and busy work schedule.
The best news after the biopsy ..... I didn't have cancer and I had Sarcoid.
More good news, I live in Boston and there are specialists here....
So I suffer a little while longer with foot pain, night sweats and general ill feeling.
Last fall I had pulmonary tests, more scans. My lungs are fine and I have no tumors.

Lets hope it stays that way.

I swear what cured me was 3 mountain bike rides and the fact they told me I had cancer. I told myself I would beat it and started feeling better within 2 days of pet scan diagnosis of cancer.

booch24

No know cause and no known cure was what I was told in 2001. So I decided to become a detective and do what I could to find a cause and a cure, oh well, guess I was dreaming. But I am still trying and that is a good thing. Just have to keep ourselves going - get out and do things we enjoy. Might have to change some of those things around, but we must remember change can be as good as we make it.

I can no longer play golf nor can I garden much, but I learned how to play Mah Jongg and made new friends and a couple of my golf friends learned also. Still belong to the Garden Club. I must pace myself, and that is a hard lesson to learn, but it works. Get out of your chair and do what you can do. Call a friend to go to a movie, or get a group together for cards or Mah Jongg but do something. Do Lunch, that is always good. You will feel better. I promise!!!

Join all of us in being a detective trying to find a cause and a cure.

Good luck to all. Jan

lil-sadie

Well I am newly diagnosed-
Good news for me was finding this site a place where I feel I belong- where people get it and dont assume I am being lazy or a drama queen. A place full of those that can share in the wonder of having a good day and cooking dinner or folding all the laundry

Good news- Weather is changing- no more snow on the ground for the most part anyway sun has been out and in the high 40's

More good news- sun is starting to set later around 6 pm that means spring is on the way. It is amazing what a difference a blue sky and sunny day can make on my disposition.

timl

Some good news for me is that this forum is so supportive & understanding!

God helps us through all & never tries us with things we can't survive!

Tim

Angelxxpamela

Ok good news ermmmmmmmmm
I can still have sex yippeeeeeeeeeeeeee
oops is that allowed
have a good sunday all
xxxxxxxxxxxx
Psssssssssssst its an excuse to actually let the man do some work for once lololol

Jen5506

My good news- my insurance finally approved my Remicade infusions on Friday after a big battle. I get infusion on Monday and I am very grateful. They denied it at first because it is not FDA approved for Sarcoid....but I have failed all other treatments. They approved one year (cost of $70,000!) without their approval I would not get treatment...don't have that kind of money!!!

More good news - I have 4 great kids and friends and family that are supporting me and cheering me on...also, this site has been a true blessing. I need an outlet.

Jennifer

teeteeme

My good news is that today is a good day. I do not feel "hungover" and "fluish" and the pain is bareable. That is a really good day for me!! I am able to be out of bed, dressed, I took a walk with my incredible husband and it is only 2:00.

My advice to the newbies is, especially if you are really sick, can't work, forget getting out of bed nor have any kind of life anymore is to take one day at a time, and on bad days take it one hour at a time. If you wake up feeling awful, eat, go back to sleep and you might wake up feeling better! You will have GOOD DAYS!!

I did go into remission for 3 years and it was awsome! I thought I had done my time, but God had other plans. I got sick again, but I truly believe I will get well again, it happened once, it will happen again!! Take it one day at a time and appreciate the good days.

God Bless Everyone, this site is amazing, I wish I had found it sooner, it is so validating to read your bios. I feel like I wrote them myself. Is there ever a conference where everyone gets together for a weekend to "talk", break into groups, hear speakers, but mostly just interact with eachother? That would be GREAT!

smormac

Gardener, I've missed you! I have flares, not constant illness. Right now I'm sick free. woohoo! I try to live everyday to the fullest. When I don't feel good, I concentrate on a part of me that does feel good, and am grateful for that. I'm grateful for all of you! I have learned so much since I found this group. I love having a place to go where everybody knows your pain.

minheard

MY GOOD NEWS IS I FOUND THIS SITE, IVE HAD SARCOID FOR 3YEARS NOW AND STARTED WITH 80MG OF PRED. BUT NOW DOWN TO 15 THANK THE LORD AND A FAIRLY CLEAR XRAY. I PRAY THAT ALL OF US WILL BE HEALED FROM THIS DISEASE.

GOD BLESS YA

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