Guest guest Posted August 26, 2007 Report Share Posted August 26, 2007 Hi there. I first of all want to thank those of you lending support on this website while feeling terrible. It is so meaningful for me to have a place to write where I know others have gone through similar feelings. I am sorry for those of you suffering and I am praying/thinking of you. I am having a really hard time. I am waiting until next week to be seen at s Hopkins by a sarcoid and then a neurosarcoid doctor. I am thankful to have them. I was doing well on treatment but now am not. I was just on 4o mg. prednisone plus lyrica. I was getting ready to go back to work but started getting this exhaustion so bad suddenly I couldn't get out of bed. Then the pain came back but worse. My joints deeply ache. I get this terrible crying out pain in my arms and legs and a deep bone like pain. Plus I am literally going out of my mind just feeling so bad. I was in the hospital and some tests showed it is now in my lungs and it is growing/spreading in my pituitary/hypothalamus. Before they could do more tests though, my insurance kicked me out. I am on oxycodone/oxycontin for pain and I hate what it does to my memory plus it doesn't help my pain enough. I am 31 years old and I do not want to die, but I feel so bad it feels like I am dying. I have a wonderful and supportive husband and I am so thankful for that. I am just afraid though and know I will need lots more tests again. The prednisone is odviously not working and I hate to wait. Locally, they said I can go back to the hospital for pain control but I would rayher be at home. Some words of encouragement would be appreciated now. Thank you for your courage in giving others hope when you are feeling so bad. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2007 Report Share Posted August 26, 2007 Hi there. I first of all want to thank those of you lending support on this website while feeling terrible. It is so meaningful for me to have a place to write where I know others have gone through similar feelings. I am sorry for those of you suffering and I am praying/thinking of you. I am having a really hard time. I am waiting until next week to be seen at s Hopkins by a sarcoid and then a neurosarcoid doctor. I am thankful to have them. I was doing well on treatment but now am not. I was just on 4o mg. prednisone plus lyrica. I was getting ready to go back to work but started getting this exhaustion so bad suddenly I couldn't get out of bed. Then the pain came back but worse. My joints deeply ache. I get this terrible crying out pain in my arms and legs and a deep bone like pain. Plus I am literally going out of my mind just feeling so bad. I was in the hospital and some tests showed it is now in my lungs and it is growing/spreading in my pituitary/hypothalamus. Before they could do more tests though, my insurance kicked me out. I am on oxycodone/oxycontin for pain and I hate what it does to my memory plus it doesn't help my pain enough. I am 31 years old and I do not want to die, but I feel so bad it feels like I am dying. I have a wonderful and supportive husband and I am so thankful for that. I am just afraid though and know I will need lots more tests again. The prednisone is odviously not working and I hate to wait. Locally, they said I can go back to the hospital for pain control but I would rayher be at home. Some words of encouragement would be appreciated now. Thank you for your courage in giving others hope when you are feeling so bad. Quote Link to comment Share on other sites More sharing options...
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