Guest guest Posted June 19, 2009 Report Share Posted June 19, 2009  wow Kathy. I thought I was the only one to do the computer print out. The doctors love it. I am really sorry you had to and are going through all that crap. I have a wonderful care giver also. He has stuck with me when he could have run away. I am doing a lot better. I couldn't move anything but my head. I hope and pray you continue to regain more and more of what you lost. Prayers for you Jackie from Wisconsin Life with Sarc Hi Sarc Buddies My name is Kathy , The Sarc Monster hit me in 2001. I had hydrocephalus first(water on the brain) I had headaches and I would Pass Out On the rain on my way to work. sometimes I missed my stop and would have to get off and go back. Am MRI After my brain surgery fond the sarc monster. What followed was my first year in hell. I contracted Viral Meningitis, Uterine Cancer I Lost my ability to walk and my gall bladder ruptured, all with-in three months.that they may be related. I was very lucky because Hacensack Hospital Had the doctors that I needed and understood the disease My neurosurgeon, neurologist and Rumatologisare all At Hacrnsack. Any of my north jersey Sarc Buddies should pay them a visit the are the Best in the area for sark. Also my Rumi is the best there is for joint diseases.In the beginning of this illness I could walk, work and garden, but as the disease progressed I loss the ability to move my arms or legs, I even had trouble turning my head. thankfully I regained use of my upper body through drugs, exercise and the unflagging devotion of my nephew and care giver . He cleans me, changes my diapers (a fate worst than death sometimes...) Cleans my house takes care of my pets and goes with me to doctor's appointments. As For Drugs, I take so many I typed them up on the computer, and I Carry copies with me wherever I go, Just in case... For thy truly nosy, I have included it in this e-mail. I am doing OK.in February I went to the Hospital for an infection, I thought I would go home the same day. In the emergency room I was given Penicillin and vancimicine. I was allergic to one or both of then. I developed an allergic reaction called 's as a result, over the next 45 days I lost all of the skin on my body. It fell off in flakes, strips and chunks.Some of it I pulled off (it itched like crazy) and I even saved some (the palm of my hand) My fingers pealed off like the fingers of a rubber glove with a hole in the top were my fingernail was. for 3 weeks I had no fingerprints, I could have committed any crime and not have been identified.For several weeks my room was known as the "seventh floor Freak Show". Bcause every nursing student or medical student in the hospital had to come and take a look! My Goal is to be able to stand on my own by Christmas. Take small steps folks. Any improvement is a victory!!! Kathy’s Med List 1. ADVAIR DISKUS 100/ 50 two puffs daily 2. CELL CEPT 500 mg 6 capsules daily . Sarc 4. ENULOSE SYRUP 15 ml by mouth as needed. 5.ESTROVEN EXTRA STRENGTH one tablet daily (substitute for Permrim). 6. FOSAMAX 70 mg (one tablet by mouth once a week). 8. GLIPIZIDE 5 mg generic GLUCOTROL (1tablet when blood suger level is above 200). 9. PREDNISONE 2.5 mg daily. Sarc 10. TOPROL XL (Metoprolol) 25mg 1/2 tablet daily. 11. ACCU-CHEK COMFORT CURVE glucose testing twice daily. 12. MULTI VITAMIN with Lycopene 1 cap daily. 13. FISH OIL 1cap 1200 mg softgel daily. 14. Wellbutrain (Buderion) 15. Sol Medral-1- Gram- IV Steroids 3 consecutive days each month-for a total of 18 months Sarc 16. Lyrica 50 mg capsules -1X per day for nerve pain Sarc 17. Amiteza - 8 MCG Capsules 2X Per Day 18. Hydrocortisome cream- as needed for itch. 19. Xiox debreeing cream- as needed for wound care 20. COLODGENAISE OINTMENT- as needed for wound care Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2009 Report Share Posted June 19, 2009 Kathy, You are in my prayers, and I wish you blessings as you strive towards your goal. From the sound of your story you have already been blessed with a nephew who sounds to be a Saint. Keep the faith for I am sure that I will pray for your goal at next Christmas. If you ever feel like venting we all here comfortable listeners. Greg From: Kathy Sent: Friday, June 19, 2009 4:45 PM To: Dacota @ Cc: Rose @ Subject: Life with Sarc Hi Sarc Buddies My name is Kathy , The Sarc Monster hit me in 2001. I had hydrocephalus first(water on the brain) I had headaches and I would Pass Out On the rain on my way to work. sometimes I missed my stop and would have to get off and go back. Am MRI After my brain surgery fond the sarc monster. What followed was my first year in hell. I contracted Viral Meningitis, Uterine Cancer I Lost my ability to walk and my gall bladder ruptured, all with-in three months.that they may be related. I was very lucky because Hacensack Hospital Had the doctors that I needed and understood the disease My neurosurgeon, neurologist and Rumatologisare all At Hacrnsack. Any of my north jersey Sarc Buddies should pay them a visit the are the Best in the area for sark. Also my Rumi is the best there is for joint diseases.In the beginning of this illness I could walk, work and garden, but as the disease progressed I loss the ability to move my arms or legs, I even had trouble turning my head. thankfully I regained use of my upper body through drugs, exercise and the unflagging devotion of my nephew and care giver . He cleans me, changes my diapers (a fate worst than death sometimes...) Cleans my house takes care of my pets and goes with me to doctor's appointments. As For Drugs, I take so many I typed them up on the computer, and I Carry copies with me wherever I go, Just in case... For thy truly nosy, I have included it in this e-mail. I am doing OK.in February I went to the Hospital for an infection, I thought I would go home the same day. In the emergency room I was given Penicillin and vancimicine. I was allergic to one or both of then. I developed an allergic reaction called 's as a result, over the next 45 days I lost all of the skin on my body. It fell off in flakes, strips and chunks.Some of it I pulled off (it itched like crazy) and I even saved some (the palm of my hand) My fingers pealed off like the fingers of a rubber glove with a hole in the top were my fingernail was. for 3 weeks I had no fingerprints, I could have committed any crime and not have been identified.For several weeks my room was known as the "seventh floor Freak Show". Bcause every nursing student or medical student in the hospital had to come and take a look! My Goal is to be able to stand on my own by Christmas. Take small steps folks. Any improvement is a victory!!! Kathy’s Med List 1. ADVAIR DISKUS 100/ 50 two puffs daily 2. CELL CEPT 500 mg 6 capsules daily . Sarc 4. ENULOSE SYRUP 15 ml by mouth as needed. 5.ESTROVEN EXTRA STRENGTH one tablet daily (substitute for Permrim). 6. FOSAMAX 70 mg (one tablet by mouth once a week). 8. GLIPIZIDE 5 mg generic GLUCOTROL (1tablet when blood suger level is above 200). 9. PREDNISONE 2.5 mg daily. Sarc 10. TOPROL XL (Metoprolol) 25mg 1/2 tablet daily. 11. ACCU-CHEK COMFORT CURVE glucose testing twice daily. 12. MULTI VITAMIN with Lycopene 1 cap daily. 13. FISH OIL 1cap 1200 mg softgel daily. 14. Wellbutrain (Buderion) 15. Sol Medral-1- Gram- IV Steroids 3 consecutive days each month-for a total of 18 months Sarc 16. Lyrica 50 mg capsules -1X per day for nerve pain Sarc 17. Amiteza - 8 MCG Capsules 2X Per Day 18. Hydrocortisome cream- as needed for itch. 19. Xiox debreeing cream- as needed for wound care 20. COLODGENAISE OINTMENT- as needed for wound care Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2009 Report Share Posted June 19, 2009 I am so sorry you have been through so much, my thoughts and prayers are with you. I hope you totally reach your goal by Christmas. Connie, FL Amy Mom Subject: Life with SarcTo: "Dacota @" <neurosarcoidosis >Cc: "Rose @" <neurosarcoidosis >Date: Friday, June 19, 2009, 5:45 PM Hi Sarc Buddies My name is Kathy , The Sarc Monster hit me in 2001. I had hydrocephalus first(water on the brain) I had headaches and I would Pass Out On the rain on my way to work. sometimes I missed my stop and would have to get off and go back. Am MRI After my brain surgery fond the sarc monster. What followed was my first year in hell. I contracted Viral Meningitis, Uterine Cancer I Lost my ability to walk and my gall bladder ruptured, all with-in three months.that they may be related. I was very lucky because Hacensack Hospital Had the doctors that I needed and understood the disease My neurosurgeon, neurologist and Rumatologisare all At Hacrnsack. Any of my north jersey Sarc Buddies should pay them a visit the are the Best in the area for sark. Also my Rumi is the best there is for joint diseases.In the beginning of this illness I could walk, work and garden, but as the disease progressed I loss the ability to move my arms or legs, I even had trouble turning my head. thankfully I regained use of my upper body through drugs, exercise and the unflagging devotion of my nephew and care giver . He cleans me, changes my diapers (a fate worst than death sometimes...) Cleans my house takes care of my pets and goes with me to doctor's appointments. As For Drugs, I take so many I typed them up on the computer, and I Carry copies with me wherever I go, Just in case... For thy truly nosy, I have included it in this e-mail. I am doing OK.in February I went to the Hospital for an infection, I thought I would go home the same day. In the emergency room I was given Penicillin and vancimicine. I was allergic to one or both of then. I developed an allergic reaction called 's as a result, over the next 45 days I lost all of the skin on my body. It fell off in flakes, strips and chunks.Some of it I pulled off (it itched like crazy) and I even saved some (the palm of my hand) My fingers pealed off like the fingers of a rubber glove with a hole in the top were my fingernail was. for 3 weeks I had no fingerprints, I could have committed any crime and not have been identified.For several weeks my room was known as the "seventh floor Freak Show". Bcause every nursing student or medical student in the hospital had to come and take a look! My Goal is to be able to stand on my own by Christmas. Take small steps folks. Any improvement is a victory!!! Kathy’s Med List 1. ADVAIR DISKUS 100/ 50 two puffs daily 2. CELL CEPT 500 mg 6 capsules daily . Sarc 4. ENULOSE SYRUP 15 ml by mouth as needed. 5.ESTROVEN EXTRA STRENGTH one tablet daily (substitute for Permrim). 6. FOSAMAX 70 mg (one tablet by mouth once a week). 8. GLIPIZIDE 5 mg generic GLUCOTROL (1tablet when blood suger level is above 200). 9. PREDNISONE 2.5 mg daily. Sarc 10. TOPROL XL (Metoprolol) 25mg 1/2 tablet daily. 11. ACCU-CHEK COMFORT CURVE glucose testing twice daily. 12. MULTI VITAMIN with Lycopene 1 cap daily. 13. FISH OIL 1cap 1200 mg softgel daily. 14. Wellbutrain (Buderion) 15. Sol Medral-1- Gram- IV Steroids 3 consecutive days each month-for a total of 18 months Sarc 16. Lyrica 50 mg capsules -1X per day for nerve pain Sarc 17. Amiteza - 8 MCG Capsules 2X Per Day 18. Hydrocortisome cream- as needed for itch. 19. Xiox debreeing cream- as needed for wound care 20. COLODGENAISE OINTMENT- as needed for wound care Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2009 Report Share Posted June 21, 2009 It's a good idea to keep a list of your meds on you at all times. Never know when you may need it. I have it because I can never remember all of the meds I am on if asked.... Debbie Subject: Re: Life with SarcTo: Neurosarcoidosis Date: Friday, June 19, 2009, 7:56 PM  wow Kathy. I thought I was the only one to do the computer print out. The doctors love it. I am really sorry you had to and are going through all that crap. I have a wonderful care giver also. He has stuck with me when he could have run away. I am doing a lot better. I couldn't move anything but my head. I hope and pray you continue to regain more and more of what you lost. Prayers for you Jackie from Wisconsin Life with Sarc Hi Sarc Buddies My name is Kathy , The Sarc Monster hit me in 2001. I had hydrocephalus first(water on the brain) I had headaches and I would Pass Out On the rain on my way to work. sometimes I missed my stop and would have to get off and go back. Am MRI After my brain surgery fond the sarc monster. What followed was my first year in hell. I contracted Viral Meningitis, Uterine Cancer I Lost my ability to walk and my gall bladder ruptured, all with-in three months.that they may be related. I was very lucky because Hacensack Hospital Had the doctors that I needed and understood the disease My neurosurgeon, neurologist and Rumatologisare all At Hacrnsack. Any of my north jersey Sarc Buddies should pay them a visit the are the Best in the area for sark. Also my Rumi is the best there is for joint diseases.In the beginning of this illness I could walk, work and garden, but as the disease progressed I loss the ability to move my arms or legs, I even had trouble turning my head. thankfully I regained use of my upper body through drugs, exercise and the unflagging devotion of my nephew and care giver . He cleans me, changes my diapers (a fate worst than death sometimes... ) Cleans my house takes care of my pets and goes with me to doctor's appointments. As For Drugs, I take so many I typed them up on the computer, and I Carry copies with me wherever I go, Just in case... For thy truly nosy, I have included it in this e-mail. I am doing OK.in February I went to the Hospital for an infection, I thought I would go home the same day. In the emergency room I was given Penicillin and vancimicine. I was allergic to one or both of then. I developed an allergic reaction called 's as a result, over the next 45 days I lost all of the skin on my body. It fell off in flakes, strips and chunks.Some of it I pulled off (it itched like crazy) and I even saved some (the palm of my hand) My fingers pealed off like the fingers of a rubber glove with a hole in the top were my fingernail was. for 3 weeks I had no fingerprints, I could have committed any crime and not have been identified.For several weeks my room was known as the "seventh floor Freak Show". Bcause every nursing student or medical student in the hospital had to come and take a look! My Goal is to be able to stand on my own by Christmas. Take small steps folks. Any improvement is a victory!!! Kathy’s Med List 1. ADVAIR DISKUS 100/ 50 two puffs daily 2. CELL CEPT 500 mg 6 capsules daily . Sarc 4. ENULOSE SYRUP 15 ml by mouth as needed. 5.ESTROVEN EXTRA STRENGTH one tablet daily (substitute for Permrim). 6. FOSAMAX 70 mg (one tablet by mouth once a week). 8. GLIPIZIDE 5 mg generic GLUCOTROL (1tablet when blood suger level is above 200). 9. PREDNISONE 2.5 mg daily. Sarc 10. TOPROL XL (Metoprolol) 25mg 1/2 tablet daily. 11. ACCU-CHEK COMFORT CURVE glucose testing twice daily. 12. MULTI VITAMIN with Lycopene 1 cap daily. 13. FISH OIL 1cap 1200 mg softgel daily. 14. Wellbutrain (Buderion) 15. Sol Medral-1- Gram- IV Steroids 3 consecutive days each month-for a total of 18 months Sarc 16. Lyrica 50 mg capsules -1X per day for nerve pain Sarc 17. Amiteza - 8 MCG Capsules 2X Per Day 18. Hydrocortisome cream- as needed for itch. 19. Xiox debreeing cream- as needed for wound care 20. COLODGENAISE OINTMENT- as needed for wound care Quote Link to comment Share on other sites More sharing options...
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