going for biopsy/dealing with it for a year

Sorry to hear that Amanda. Do they think the lung issue is the sarcoidosis flaring back up or what? I have had a problem with catching colds and strep a lot lately. It is so frustrating, since I'm always under the weather and never feel up to playing with my kids. I stopped taking the metheltrexate because I thought it contributed to the colds butmI'm steal having that problem. Just remember that your not alone in your struggle.

What do you need.?

Hi Amanda

Im sorry to here of your circumstances. I think its important to realise Sarcoid doesnt develop in to Lymphoma they are two totally different conditions. I do believe they present as very similar symptoms. When I was in hospital they thought I had TB, Sarcoid or Lymphoma. I actaully asked for TB because tratment was free and it was over, but no, I had sarcoid. they didnt want to discuss Lymphoma but I made them, I wanted to know. Im no medic but you current side effects dont relate to Sarcoid. Depression is all part of it im afraid, and not a very high priority on the medics list. if it is at all. I realsie how difficult it is in waiting but at least something is happening and you will get a result to know what you are dealing with. 

Just realise you arent alone and be guided by the medics. perhaps you can be open with your GP and just off load on them in the meantime

All the best

Nicola

So sorry, it was meant to say what do you need!!!  Fibromyalgia and Sarcoid.  It's hard to know what to say, you have practical, medical and emotional needs, all at once. I was just wondering if I could help in any way. 

Nickademus is right, I've had quite a few checks for lymphoma, all negative.

Hello again Amanda

Of course your emotional its natural and your mind runs away with itself. Its good youre talking about it on here. We arent emotionally involved so we can offer advice based on our own experiences and be more objective. If I was in your shoes I would be thinking the worst and we are all doomed. It seems an age until the biopsy date and as much as you want it come and find out whats going on with you, you dont want it to come because you are scared of what will be the reality. As much as you can, enjoy times with your daughters. I cant have children so make the most of them. As hard as it is dont focus on the 23rd. Focus on getting through today, Then do the same each day. I think once you have a concrete diagnosis it will seem easier what ever it is because a plan of action will be in place. Its the not knowing that makes it worse. I had to have an Ebos and a bronchoscopy which were unpleasant and had CT scans, Xrays and ultrasound. I cried all the way through the ultrasound much to the girls disgust. But I was terrified of what they would find. I wanted them to find enlarged lymphnodes in my neck so I didnt have to have other things done. But I didnt want them to find them because it meant lymphoma. Then that snowballed into allsorts im my mind. As I say its the not knowing. As I said before, try to chat to your GP and off load on them. They can give you a medical perspective which may help

I maybe wrong but when you are holding things back from your husband and you realise you are pushing him away, have you thought he want to help, to understand, to share to take the burden? I can understand you not wanting to put it on the kids. Maybe your husband realises what youre doing and that he wants to help but doesnt know how. Lack of communication causes war. You dont need that on ontop of everything else. Count your blessings 1 by 1. My relationship ended during my recovery. I ended it, but it was a case of youre out of hospital now, you should be better. I left him to go and live on his own planet!! My mum has been an absolute rock and she has taken alot of the burden in listening to me and yes ive not told her things. thats why Im advising you to talk. My dad who lives away from me, was the least supportive to me because I wasnt there to run around after him. So if family want to help, let them

Im a teacher too. One thing ive learnt that Sarcoid presents more in Teachers for some reason. reading your comments I take it youre in America or that way over. Im in England. And its always easy to tell a complete stranger than it is to tell a close loved one. But if it helps then it doesnt matter who you tell.