Neurosarcoidosis] To Kim from Naa Koshie

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Dear Kim, I know you are going through a tremendously trying time right now. I'm so sorry. So, now as it stands, you have to go to the hospital on Saturday and wait. Ugh!! Take a good book in your hands and a prayer of patience on your heart. I wish you the best. I've been ok lately. My doctor has lowered my Prednisone dosage and is considering weaning me off and trying another drug (I can't remember the name right now). I have started working out to attempt to lose some of the 70 pounds I have gained. My body is having a love/hate reaction to the extra activity. I am having some real pain from the workouts, but am trying to push through it and be patient

with myself about shedding the pounds. I come from a very physically fit family that feels compelled to mention my extra weight whenever they feel like it. It makes me want to stab them with something jagged and rusty. Instead, I give a smart ass remark with a smile. I am a little concerned about some swelling in my legs. My doctors noticed it but said that I should stop eating salt because it causes me to retain water. Well, I hardly ever used salt before they said that and since, I've totally stopped using salt at all. I also avoid foods with a high salt content, but still have swelling. I don't know what to do. I feel they should be more concerned. Is this a sign of something else? Anyway, there's my

situation in a nutshell. My children are doing well. Soccer season for my daughter (Maya, 7) begins in a few weeks and my son (, 15) has started working and paying for his own things. It's really cute. Please keep us updated (if you can) on how you are doing. I am so concerned. Naa KoshieK Alostaz wrote: Dear Naa Koshie, Thank you for your reply and prayers and positive thoughts. As I just wrote Matt, I am STILL waiting on this infusion due to a lack of available beds in the ER / hospital again. But they have

said to just show up saturday and wait til one is open, so saturday it is i guess. I hoep that things are going well for you. How are you? Are you feeling well? I think of everyone here so often and will be praying for you as well. Let us all know how you are doing. Take care, Kim NS Moderator"Naa Koshie O. Mills" wrote: God Bless You, Kim!! You have such a good heart and I wish you all the best. I pray that the infusion goes smoothly, that your body reacts to it positively, and that it restores you to a state where you are able to function and take part in your life the way you want to. I pray your family gives you the support you need, knowing they will be rewarded with a

stronger mom and wife. Much Love, Naa KoshieK Alostaz wrote: I have been having such a rought time , even in light of these past months these past cople weeks have been esepecially difficult, but have finally gotten a bit of what I hope is good news. After my hospitalization the last time a committee had met regarding my case after I had come home, and the ministry of health here agreed to bring in Remicade for my case. I was recently notified of this and have been waiting for the medication to actually arrive in the country before announcing this wonderful news and celebrating. Its been so long, I was starting to lose hope it would actually happen, but yesterday I finally recieved the call that the medication was here and I am

sitting here this morning waiting for a call that there is a bed available in the ER so that I can go and begin the infusions today. I am nervous and worried, excited and relieved, apprehensive....... I have no Dr who will really answer any questions for me..... but I have just decided to leave it in the hands of God now. I know that the prayers of so many of you have helped me get this medication that I , and my family, so desperatly need. Thank you so much for being there for me and keeping me in your prayers and thoughts, though I have been away and quiet all this time. God willing , the treatment will go smoothly and they will know what htey are doing. I really do wonder. All I can do is have faith. I look forward to getting back here on a more regular basis. Thank you again to all of you, who

have kept me in your prayers and thoughts. Take care and God Bless, Kim NS Moderator Relax. Yahoo! Mail virus scanning helps detect nasty viruses! "How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ Washington Carver Yahoo!

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