Guest guest Posted May 5, 2002 Report Share Posted May 5, 2002 Hello, Just an update on what has been going on. I’m still in the hospital and hope that I might be able to leave sometime next week. I wanted to thank all of you who have written me. Vera: The poem accident post was really helpful but from what you said, I should rescind my thanks and forward them to Shirley for the posting it to begin with. So I guess I must change what I am thanking you for. Here it goes, Thank you Vera for having an online accident. LOL Shirley: Now that I have been corrected by Vera, Thanks for posting that beautiful poem so that could Vera accidentally reposted it. It helped me a lot. Jeffery: Thanks for the good wishes Barb: Thanks for the prayers and did you call me? I think it was you but it might have been the Barbara from another group that I am a member of. Anyway, if it was indeed you, thank you very much, if it wasn’t, you don’t have to tell me and I’ll never know the difference. LOL. Bill: Thanks for the info on the gall bladder. The test came back negative so I’m happy about that. I am not on any antibiotics for this. Because of the drug reaction in February, I have left in a state of hypersensitivity to antibiotics. I have been told that I probably will not be able to take them, in any form, again in my life because of the botched job of treating my staph infection and my hyperactive immune system. My blood workup looks good, nothing out of the ordinary. Don’t have the flu, no blood disease… and let me tell you, they checked for disorders so rare I had to look them up. The pain is from the MSA. I’m not sure what you meant when describing body temperature to me. My normal temp is 97.4 and a temp of 100.4 will leave me feeling terrible, at 99, I am tired and achy. It really doesn’t matter that that the doc who argued with me should be drop kicked or not.. my PCP’s father had atypical PD and he took care of him for 16 years and has put on my medical records here at the hospital to give me Tylenol if my temp goes above 99. Carol & Rob: Yes, they did find out what was causing the rash. The complications that I developed after the brain surgery and the progression MSA has caused my immune system to be hyperactive. Anything that I try to take that I have taken before is being rejected by my body resulting in this rash. It got so bad yesterday that I finally gave into the doc’s request that I start steroids again. He knows how much I dislike the steroids and waited for me to accept them. He had been offering to put me on them since I got here but stubborn me wanted it to just go away on its own (which was a possibility, I was told). Marilyn: Thank you for the information. I now have something to give me hope that I might find a med that I won’t react to. I took a new medication yesterday for edema and had NO reaction. I tried another pain med this morning and wham, back cam the rash in virulent form. I will write down all my medications that I am reacting to and look for a common thread… wouldn’t it be just about right if I have spent all this time in the hospital because of a “filler” in the medication. Sally: I don’t think that I am latex sensitive. You are correct that I have been exposed to it a lot lately. I did a count and have been in the hospital 33 days since Dec. 20. My immune system is just whacked out from everything and I was going to give in and just quit trying to find a pain pill because of my fatigue from drug reactions but Marilyn gave me a new reason to search and that is exactly what I am going to do. We talked to the PCP, an internist, yesterday about an allergist. He told us that if I were healthy maybe we could risk having me tested to find out what is causing all of this but because of the shape I am in, it would be dangerous to expose me to their tests and just to make me giggle, he asked me if I really thought it was possible to have an allergist come in and look at me and tell me what I was allergic to. The dermatologist did run some kind of allergy test using my blood test but they all came back negative. Timo: My dermatologist ran some blood tests and told me that I have hives because I am allergic to something. We have seen the rash come and go depending on what medication I take. That is one reason that they are still keeping me here… trial and error. It doesn’t appear to be related to anything environmental because the only time that I react is about an hour after taking certain drugs. Aletta: I agree, I’m going with the allergy theory as is my PCP. I’m going to do some hunting and digging today to find the common thread and will talk to my doctor about it. Pam: You are so sweet. I don’t give up easily but I just about did on the pain med thing. Everyone here is of so much value. Ya’ll actually spent the time to think about the question that I posed and have provided me with NEW AND WORKABLE info to take to my doctor to try and solve this riddle. WOW, ya’ll are GREAT! Belinda: I had a smart-ass remark to make about your post when I first read it but wasn’t feeling good enough at the time to respond. Now that I have gone back and re-read it, I can’t remember what I was going to pick on you about. Whaa! Oh well, guess I will have to wait till next time. Yep, the laptop is with me here in the hospital. I haven’t felt well enough to use it until today. Thanks for the prayers, they do help. Belinda, I also want to say something on a more serious note. I am not angry with anyone I have met or anything that I have gone through because of this disease. I do use the word frustrated because I am not in control of the situation and seem to be pulled along some magic carpet ride that I had no voice in taking. I don’t like not being in control. But anger is not something that I have given in to. I know from the bottom of my heart and soul that God has a reason for me going through all that I am. I also know that it does not necessarily have to have anything to do with me but may just be a way to bring others to him through my experiences. So far, I have been led to 2 other members of my church and have received 2 letters from people that were just about to commit suicide but changed their minds after reading my story. That information was almost too intense to be told. I have prayed over this and have even asked God if he knows what he is doing in this case. Proof always comes when I start to doubt again. For instance, I had written a letter to the editor of the Charlotte Observer and it was published in yesterday’s paper along with my picture which resulted in even more people emailing me and telling me their story and perpetuated me retelling once again the origin of, “My strength, courage, and stamina comes only from 1 place…. God’s Grace.” So you see, I experience many emotions with this disease but can usually dig deep enough to find some good from it and when I falter, someone on the list always comes through in time to kick my hiney out of whatever mode it is in and jump start my tired little battery again. Guess you might say that instead of being like a disposable battery, I am the rechargeable kind. Now all I have to do is figure out what brand. Think I would rather be an energizer than a generic one. LOL. I do have another hospital horror story to tell (bet ya can’t wait) but will do it in a separate post. Thanks again everyone for all of your support. To the new folks here…. You will find this group to be a wonderful source of courage, support, help and information. I don’t believe you will regret finding these people. For those that have lost someone dear to them, I admire your continued support for those of us still in need of answers and assistance. I wish each of you peace of heart and joy or mind for standing by the ones that you love. Deborah aka TenacityWins _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2002 Report Share Posted May 5, 2002 Deborah, Thank you! I just got home from church and jumped on here to see if you replied to my post. Yeah! you had. I am glad you explained that to me because I don't always remember what I post but I always know I have good intentions. LOL (God bless me, I surely need it)I guess you didn't get my saying I was starting my own saying " It's a wonderful thing " I figured I would grab it since Martha has " Its a good thing " hehe I am definitely not a Martha wanttobe LOL. Even I don't believe Martha can be what Martha wants us to believe she is! We could start our group in here though with our own sayings " It's a wonderful thing " especially because there is so much love here! That aint no lie! There is always a rainbow if we look hard enough. Oh me, someone in here had a wonderful saying and it might have been you Deborah (excuse my brain farts) but I can't even remember what it is but I do remember it was a wonderful saying. Ok so why did I even bring it up? Who knows? Only because I know it was a wonderful saying and my fingers needed exercise. LOL God Bless us all, Belinda > Belinda, > > You never hurt me in any way, shape or form. You had said, " I can imagine > the anger you must have over all of this. I would also if I had to go > through all that > you have been through " I just wanted to let you know I am not angry and > why. > > I met a lady shortly after my dx that was angry at the world for her > having an incurable disease. I prayed that I would always remember to use > her as my mentor. She inspired me to know exactly the type of person that I > NEVER wanted to turn into because of this disease. She motivated me to keep > tabs on what I say and do and I wanted to respond to what you said in case I > came across that way. > > Thank you and your family for all the prayers. I do know that prayer > works. > > Lastly Belinda, you make posting fun. In reference to your saying, " I > wish I could help you with suggestions like the others but I don't know > enough to give you suggestions. " I'M BLOWING YOU A BIG RASPBERRY HERE!!! > Each person contributes what they have and help in different ways. You dear > lady, always make me smile with your quick wit and intellect. Honey, you > and I would be great fun together if ever given the opportunity to be > deliberately put together in the same room for any length of time. Think > about it, no one would forget us, I'm sure. Never again do I want to hear > you say that you don't have anything to suggest. You have a great big heart > and one wry wit about you and i love you dearly for it. > > Hugs and Warm Fuzzies, > Deborah > > > _________________________________________________________________ > Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
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