Denial

It was a year ago next month when I was first admitted to the hospital with possible Lymphoma. I was very sick and going downhill fast according to all of my labs and X-rays. None of the diagnosiis looked good including pulmonary fibrosis. I received a bronchoscope which came up with nothing, then the mediastinoscopy. Sarcoidosis.
Now I have done a fair bit of research but I apparently decided to skip important things....such as there is no cure. I only now came to this realization as my chest has started to become painful and my ace is elevated to 69. I consider myself intelligent and well educated but as I sit here wondering whether or not to go see the doc. tomorrow, I have to ask how did I not reserach more? Ask more questions, get more advice...join a support group.
Well here I am now to learn from anyone who can teach about this new found crutch. I work in health care and deal with others' illnesses every day, never have I had to give myself any attention. I work out as much as possible, eat better every day, try to have a glass of that red wine every now and then. (More now than back then)
Why can't I control a little thing called ACE? We are taught how to control blood pressure, cholesterol, our temper. I just missed this class on how to face an illness head on that I cannot control. Don't get me wrong, I don't feel sorry for myself and I see there are so many people here dealing with more.
I just wanted to introduce myself to this community and offer support to those who feel the same way as me.

By JanetGrant
Posted April 25, 2008 at 4:22 am
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Dear Lawrence,

Welcome!

Like the rest of us, I'm sure you'd rather be just about anywhere, but here, especially at the age of 34.

We have a great bunch of people here and I'm convinced you've joined the best support group available for sarcoidosis.

I have pulmonary sarcoidosis, which I'm assuming is your diagnosis also. I've done a lot of research and I am willing to help you in any way I can. If I don't have the answer to any of your questions, I have plenty of friends here who will.

I've written a journal titled : "SARCOIDOSIS... No Day At The Beach." I've tried to put a lot of reference material in it and reading it may help you.

The Gardener's Journal is excellent. It's title is: "My Pet Demon". It's best to read his journal from his first blog and on up to the present, as he has over 100 posts and they are pretty much written in a chronological fashion. Warning: He will make you laugh, no matter how bad you're feeling. This I can promise you.

For the moment, try to stop worrying. This disease feeds off of stress. We are all in this together. I'll be a friend you can count on. You'll make many others here. Let me know how I can help you. I'm right here... JanetG

P.S. It is true that there is no cure, however in many cases it does seem to just go away and disappear, never to return again. This occurs (as I've read somewhere) most frequently in the younger group of patients diagnosed with the disease, those who are diagnosed between the ages of 20 to 40. That's pretty encouraging, don't you think?? Later... JG

By bevS
Posted April 25, 2008 at 8:39 am
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hi Lawrence, I agree eith everything that Janet said. If you haven't found the Foundation for Sarcoidosis Research website yet, take a look. They have a number of brochures that you can download.
Feel free to ask questions... you will always get answers from people who know what ypui are going through!!! BevS

By CoastalCoreKayla
Posted April 25, 2008 at 9:58 am
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Hey, welcome! I agree with the previous posters, FSR is great and they have a ton of info. Also, this site is a great support. I wish you all the best and good health. Take care of yourself!

By SarcoidPrincess
Posted April 25, 2008 at 11:09 am
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Hello Lawrence,
After three years of not knowing what was wrong with me I too landed in the hospital with possible Lymphoma. Had the medinstinoscopy and it is Sarcoidosis. All though I'm relieved to know what it is I still am in a state of shock. I realize that I'm sick but still haven't come completely to terms with my illness. I understand everything your saying and feeling right now. The more I try to do the more my body says STOP! Then I have to take it easy and try again. I'm trying to find my happy medium which right now seems impossible. I know you will find alot of support here and great information too. I hope today is a better day for you.

By Lawrence
Posted April 25, 2008 at 4:29 pm
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Thank-you all very much for your replies. Today is a better day for me, I think I met up with my moment of weakness.
I am with you SarcoidPrincess (I like the name) I am constantly pushing myself to the limits, because I used to be able to. I mean, I was...indestructible. I found my Kryptonite.
Janet, thank-you for making my day. My diagnosis is pulnomary sarcoidosis. The doc has always joked with me and said "don't be depressed you have no reason to be, you are in the group that generally goes into remission". I still hope that it does but am discouraged right now. I am very glad to have found this website and started to share a little.
Thank-you as well to Bev and Coastal for the great welcome.

By Tuppermom
Posted April 25, 2008 at 8:07 pm
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Be Hopefule and BELIEVE you will feel better! I try and saty hopeful and my husband bought me a pendant that says "BELIEVE" I wear it everyday and when I get down I hold it and remember to believe!! I was in a bad spot for a while, never hospitalized, but on the couch, in pain with fever and chills for a few days at a time, not even able to take care of my kids like I should! Good news is I feel ALOT better, not 100% but much better than I was! I even took my kids and thier friend out for a day at Fairytale Town and Funderland!!! Yes I am exhausted, but a month ago there is NO WAY I could have done it. SO HAVE HOPE AND BELIEVE that you are one of the ones who's symptoms with magically disappear!!! Good luck!

By kool_mom_95
Posted April 25, 2008 at 9:39 pm
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I just wanted to say good luck and keep your head up. There are times you feel you can not take much more, however, that is when you really find out what you are made of. Hopefully you will be one of the lucky ones. I was dx at 37, but I actually had it for at least 10 yrs prior to that, but the drs over looked it. Mine has not gone away. And if you need to know more check out my page.
I just wanted to agree with the above fine ladies that say to HOPE & BELIEVE! Good Luck!
Kim

By Kathleen_Geaghan
Posted April 26, 2008 at 2:22 pm
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Lawrence, I haven't been on very long either, so welcome. I'm 55 now and was dx when I was 44. At that time I couldn't even find out what it was. I had to write to the Arthritis Foundation to get any information. I believe like everyone else, take control and keep on going. We are sort of like that little energy battery bunny! I've been knocked down quite a few times but when you know someone else is there that understands it helps alot. I have pulmonary and nuerosarcoidosis. Plus everything in between. So hang in there and you will be surprised what you can handle. Hugs, Kathy

By Michele5
Posted April 26, 2008 at 5:30 pm
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Hi Lawrence,

Welcome! You've come to a great place. I just joined the beginning of this month and it felt like home immediately because everyone is so helpful. Also, the information from everyone is so helpful and comforting.

I see in one of your postings you say you push yourself to the limit. I used to do this too, but then I realized that it was only doing me in and making me sicker (stress, stress, stress - avoid it as much as possible). Now I just do what I can, and then rest a little when I get tired and woozy. Then I can do some more. A little at a time is my mantra these days. Now I think I get more done than I used to because when I pushed myself, I'd get sick and end up in bed.

All the best to you,
Michele

By Snoopy2
Posted April 27, 2008 at 8:55 pm
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Hey I'm right in there with you. Just diagnosed earlier this week. Quite a scare they thought I had lymphoma (which my 20 yr old brother died of). I'm still trying to find my way through the literature so I can understand what I'm in for and how to prepare or handle life.

By Dawn1973
Posted April 28, 2008 at 7:19 am
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Hello Lawrence,

Welcome to the group!!! You have certainly come to the right place! you will learn a lot here and make many new friends and acquaintances who will help you get through this. You are not alone!

Like you, I was initially told that I could have lymphoma! Scary being a mom of 3 school aged children who needed me! It took them several weeks to get me in for the Mediastenoscopy that finally confirmed Sarc. A welcomed relief compared to the alternative!

I cannot say that I have been one of those lucky ones whose sarc has just disappeared, never to return, but I can say that I have learned to deal with it, and to expect the unexpected when it comes to this illness. Mine has gone from being in my lungs and lymph nodes to a few years later being in my liver, breasts, skin, etc. I am certainly not going to tell you that it is easy, because it is not, but I can tell you that though you may have bad days, you will certainly have good days as well. You will learn what your body can and cannot take anymore when it comes to your limitations and you will learn that stress certainly does make it worse! There will be times when you are sick and tired, and you will need to learn to rest during this time. I too was one who always pushed myself to the limit, but now I have learned that my body has new limits. When I stop fighting this, my body and I get along much better!!! Your Ace levels will fluctuate. They will go up and come back down. You may have to also monitor your calcium and vitamin D levels as well. These can play an important role in sarc! At age 34 I discovered there was calcium in my blood. It is not supposed to be there, as my Rheumy says.....It is supposed to stay in your bones. I have learned to limit sun exposure and watch my diet so I do not overdo the calcium and Vit D. (scary when you find that at age 34 you have the potential to have Osteoporosis.
You will learn to adjust though and we are all here to help in any way that we can! My best advice to you is this though. Make sure to keep copies of all tests that have been done. Any CT scans, MRI's Labs, etc. Keep them all together in a binder so you will have them to show your other docs. This will help them to know what has already been done and to keep them from repeating tests unnecessarily.
Please feel free to contact me anytime! It is not an easy road ahead, but you are strong and you will be okay!!! I just know it!

Be well

Dawn

By NanM
Posted April 28, 2008 at 11:52 am
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"I just missed this class on how to face an illness head on that I cannot control."

Funny, I missed that class too. I think we all did. I think we have all grown up thinking we SHOULD be able to control things, and, here is something neither we nor anyone else can control.

Somehow, each of us must make our peace with the sarc and learn to live with it. Which is not to say we do not constantly seek to find the method to get better, but, sometimes better needs to be defined as a small advance and not a cure.

So, we learn to slow down, take a nap when need to, admit we can not easily 'just do' as we used to before the sarc, do the kind of self-care which helps - like a good, nutritous diet, and make our peace with what we can not control. Reaching out to others in a support group is not a crutch but one more way of taking care of yourself. Welcome -

Hang in there -

By BDILLY
Posted May 1, 2008 at 7:03 pm
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Lawrence,
I'm right there with ya bud! Fighting something you can't control, seems impossible.
What caught me off guard, is the lack of education and understanding in the medical field and down right incompetance! When I went in for my lung biopsy, they told me they were going to go in with a camera, in my nasal passage to my lung. And that I could go home the same day. It turned out that, they forgot to order the camera for that day and the Pulminary Specialist, had included a small sentence in his order for the biopsy. It basically said, that he wanted to do an "OPEN LUNG" biopsy as a second choice of action. I was not aware of that part! So, while I was under, they cut me open on my right side and took a piece of my lung. I woke up in ICU and they kept me there for 5 days! The doctor would not come to see me in the ICU and I had an allergic reaction to the MORPHINE! Fun times!!!
It seems like the medical comunity has no idea what Sarcoidosis is and how to treat it.
Luckily, I have a NEW, great Pulminary Specialist at the University of Penn, in Philadelphia. He has gotten allot done for me and helped me with dealing with Sarcoid and not run from it!
Just in this past year alone, there have been leaps and bounds of knowledge discovered and shared!
This group, really knows what they're talking about and they genuinely care!

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