Guillian-Barre Syndrome- A New Chapter
On Wednesday 9 Mar 2010 I was diagnosed with guillian-Barre Syndrome an autoimmune disease that attacks my nervous system. A rare disorder after an awful case of Scarlet Fever that has left me hospitalized and asking myself, with no intention of jinxing myself, "What next, God?"
Each passing day is scary for me and crucial with GBS. It progressively gets worse and eventually will leave a patient paralyzed and in need of respiratory assistance. I want to catalog each day and my experience with it so that we can all understand what this disorder is and possibly give us some insight and hope toward recovery.
14 March 2010- (400 am) Spring Forward! Awoke from strange dream. 3 hours sleep. Respiratory specialist came in to do peak flow. Numbers are steadily decreasing. This measures my lung capacity. two days ago it was 3.96 and yesterday 3.34 now this morning 2.91. This could be a sign of decreased lung function or maybe I was just tired. Next my feet began to burn and itch. trying to figure that one out with the nurse. I'm her first case of this as am I with the other workers here, but we decided we'll "walk" through this together as we learn through this experience. So she's looking it up to see if there's any connection. One nurse read from some paper as I was getting my immuniglobin treatment (3 down of 5 day treatment) and mentioned something about itching and at the time I didn't have any. Anyway, I'll ask the doctor today for sure and tell the nurse tonight. We're hoping it means some feeling is coming back! But then there is my blood pressure. Another thing that will go as this progresses over the next week to 4 weeks. It fluctuates, but this morning it read 91 over 64. This of course was a second reading because my first was 89 over 59 or something like that. I saw it. I did I did. No alarm but really I see so many signs of progression that it scares me. Prayer and meditation may help. I just want it to stop. Its almost 5 am now and I think I will rest.
On Wednesday 9 Mar 2010 I was diagnosed with guillian-Barre Syndrome an autoimmune disease that attacks my nervous system. A rare disorder after an awful case of Scarlet Fever that has left me hospitalized and asking myself, with no intention of jinxing myself, "What next, God?"
Each passing day is scary for me and crucial with GBS. It progressively gets worse and eventually will leave a patient paralyzed and in need of respiratory assistance. I want to catalog each day and my experience with it so that we can all understand what this disorder is and possibly give us some insight and hope toward recovery.
14 March 2010- (400 am) Spring Forward! Awoke from strange dream. 3 hours sleep. Respiratory specialist came in to do peak flow. Numbers are steadily decreasing. This measures my lung capacity. two days ago it was 3.96 and yesterday 3.34 now this morning 2.91. This could be a sign of decreased lung function or maybe I was just tired. Next my feet began to burn and itch. trying to figure that one out with the nurse. I'm her first case of this as am I with the other workers here, but we decided we'll "walk" through this together as we learn through this experience. So she's looking it up to see if there's any connection. One nurse read from some paper as I was getting my immuniglobin treatment (3 down of 5 day treatment) and mentioned something about itching and at the time I didn't have any. Anyway, I'll ask the doctor today for sure and tell the nurse tonight. We're hoping it means some feeling is coming back! But then there is my blood pressure. Another thing that will go as this progresses over the next week to 4 weeks. It fluctuates, but this morning it read 91 over 64. This of course was a second reading because my first was 89 over 59 or something like that. I saw it. I did I did. No alarm but really I see so many signs of progression that it scares me. Prayer and meditation may help. I just want it to stop. Its almost 5 am now and I think I will rest.
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