Last night I was feeling depress, down in the dumps again complaining WHY ME. I spoke to some ladies in a group called Loving and/or Caring For Someone With Sarcoidosis. They gave me their horrors of sarcoid and I must say what I am going through is just the tipping of the iceberg. I am afraid, some had sarcoid in the liver, brain, eye and other bodily organs. I wished i would have talked to them before I took this drastic measure. I felt some type away last night and this what happened:
You can see the sarcoid on my scalp if you look closely, my scalp is suppose to look light, but it is dark because of this disease. I was going to shave it all off but my husband stopped me. I need my family to help me through this, they don't know my pain. If only they would call and say hey auntie how are you. Don't get me wrong 1 or 2 has talk to me BUT I have a lot of nieces, you wouldn't believe it . Anywho, i'll be okay, my sarcoid sisters/brothers are now giving me support.
As always BREATHE WELL.
Ma.....
ReplyDeleteI'm praying for you cousin, though we have never met, I can empathize with the pain and hopelessness you feel. I hope that finding this group gives you support and someone to vent to about your illness. continue to love yourself, and believe God for comfort and peace.
ReplyDeleteI am sorry you are having to deal with this disease! It can be a nightmare. There are times it can go "quiet" and those are the times I relish. I have it on my scalp, and lymph nodes mostly.
ReplyDeleteWe all need very good support systems but unfortunately this can be hard to come by because we often "don't look sick." I cannot tell you how disappointed I am with many of my friends and family and their lack of support and their "get over it" attitudes. I have basically stopped communicating with them. I want to be surrounded with supportive compassioante people only.
Anyway, I wish you the very best and hope that it can go into remission and give you some relief.
Take care.
Mike
thank you do not disturb and mike for your comments just to know i am not alone is relief enough for me and i am sorry too mike that u suffer with this disease only ppl like us know wat we r going through...i'll pray for you because i know how you feel.
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I'm keeping you in my Prayers, I do not know, your pain and Daily suffering, however I understand disease and it's progression as well as the cost to the Human spirit, teh loss of contact with loved ones the isolation, pain, and hurt that you must be going through, I pray that your Husband continues to be a guiding light and a strong supporter for you. Don't feel bad that all your Family Memeber's don't call, and don't hold it against them, Often times People cannot for whatever reason deal with Illness, they don't understand it, and some are scared to discuss it, because they don't want to offend. I find that a great deal of times if i'm the one that calls that really open the door for discussion and they will be more inclined to call once in a while.
ReplyDeleteTy and I never thought of it that way. Thank for bringing that to my attention.
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