Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 Jan, I hope that everything goes well with you at Vanderbilt and that they can give you some answers and get you to feeling much better. Take care of yourself. I will be praying for you as always. If you need to talk my phone # is in the data base and if you can call me collect I have no problem with that as I feel like you are my friend and you totally reached out to me this summer and if I hadn't been in surgery or ICU so much I hope I would've been a better friend to you. You made me feel really special and that someone really cared other than my family. Through illness it is hard to keep friends that aren't ill themselves as they can't really understand why you feel cruddy all the time. Take care. Love ya, Jeanna -- Jan B, pioneer! Dear Jan, Congratulations! I am thrilled for you. See? Told you once you take those first few steps it's not so bad. Think of it: you're blazing new ground. Of course you're scared. Columbus was, too! But he did. So can you. I was scared out of my undies. I don't think you'll have any probs once you get in front of the ID. You're going to vanderbilt: a GREAT place for this. Your problems are going to be trying to find your isolate and then waiting for test results. Those test results are among the longest in medicine. It can take weeks! I think mine came back pretty fast because I was that infected. So from the time you do the sampling (from whereever in the body your doc elects), you can add on about two months before you're into the trying of the antibiotics. It was, for me, a very long wait. And you second guess yourself everyday. Have patience!!! You've got about 10 folks here who have made ID appointments. Lean on them! That includes everybody from S to Aisha. If you need them, just post and get them to write you privately. I'm sure they will!!! They're as scared as you are!!! (Ha!! They probably think I'm nuts, too, but trust me, I'm not!!) And they have the same courage you do. The same determination. The same fierceness. Remember: once you get in front of the ID, your job is NOT to badger him or her or to find out how much he already knows about sarc and mycobacterium. They also, by the way, call it atypical mycobacterium, nontuberulosis mycobacterium and nonHIV mycobacterium. Your job is to say this: I have sarcoidosis, a form of it. There is some evidence (and at that time present the studies I told you about) that is growing that sarc might be caused by one or more of the actinomycetes family. I'd like to explore this option. Can you help me see if I have this? And if you can't help me, could you give me somebody who could. Also tell him/her that you know they have various ways of trying to find it and that you're interested in that, too!!! That way you don't badger, confront or demand. You just nicely.......ask. Ask but then stand your ground, too. Just like S did. Use her as the role model. Hey, you're a southern babe. You know the phrase well.........slop sugar. It works!!!!!!!!!!!! I'm not saying to play dumb, I'm saying to slop it, honey. And you can do it!!! You have all the info you need. All you have to do is reread my past posts. They tell you just about everything. Remember, the choices you make are only as good as the information they are based on! I tried to give you ALL the info I could!! I think you are well armed! I wish you a ton of luck. I hope, down deep, you do NOT have this. But my great fear is that you do. I did: 4 of them. Here's one other thing I've also discovered. When they did those big studies, they tried to harvest germ samples the same way from all the participants. That way, everything WAS the same. Studies can be like that. They want sameness. A lot of them either used sputum or lung tissue. But let's say you had a participant where they didn't take it one step further, and didn't go for the liver or the spleen because, again, the studies' requirements were that everybody be treated the same. So let's say you actually had people who really did have this: it just didn't show up in sameness of the sputum or lung but would have shown up in these other things. I'm wondering now, out loud, is that why there was always 10-15 percent who came up short? Makes me wonder!!! I don't have a good answer. I wish you luck! I wish you roses. And since Valentine's Day is just before your appointment, I'm sure you'll see.........lots of them!!!! Have courage. Have a little faith. And stay the course. It's a big thing to ask a doc: to change an entire diagnosis. And that's what you're essentially asking. So know how HUGE the course is!!! But know that for me, the outcome changed my entire life. A life now maybe I'll get to get! Best of luck, M ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community Live Group Chat:- Mondays & Fridays 10pm EST USA http://www.elderwyn.com/neurosarcoidosis/chat.php Message Archives:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2004 Report Share Posted January 29, 2004 Jan, I will be thinking of you as you have your appointment, hopefully they can figure something out to really help you get some results. I have finally got an appointment with the eye doctor before I wind up having a wreck and losing my license. The neurosurgeon has wanted me to see one for quite awhile now but for some reason I wasn't able to get a hold of him. One of my eyes isn't moving right and now it is functioning on the seeing right, I have got to see if it is brain related or sight related. I hope its eye because then I can just get my glasses changed can't hardly get my brain changed, I am not sure why not they have done everything else to it, ha. Take care and I will be thinking of you. Your friend in Texas, Jeanna -- Re: Jan B, pioneer! Thanks Jeanna, I really appreciate your hand in friendship and your prayers. Physically i'm not well by far then pile up all the emotional crap my oldest daughter Janice is putting me and my whole family thru is enough to kill a well person. I don't know where I went wrong but one thing is for sure I never abandoned or abused my kids much less for a man. Well it's in Gods hands now and the good old government. I'm going to see the ID doc on Feb 16th and I hope its a turning point for me. I pray its a turning point for us all. Much love and prayers to ya and thanks again for being there and being a friend. Jan ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.542 / Virus Database: 336 - Release Date: 11/18/03~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2004 Report Share Posted January 29, 2004 Thanks to everyone for your prayers and well wishes. I haven't been thinking too clearly and sorry for having such crappy postings everyone here has enough problems without hearing about my family problems. I have to say that you guys have been a real family and compassionate friend when I have needed one the most. The foggyness in my head is getting worse and to tell you the truth this is all scaring me to death. I haven't felt this bad in a long time. I know the emotional stress is adding to the physical problems so I have let the emotional part of it go at least i thought i had anyways. I'm just trying to muddle through the best way I can. The neurosurgeon did increase my topomax back up to where it used to be before my pcp cut it down when i wentr in the hospital last time also increased my neurontin ti 4 times a day i used to have it prescribed 4 times a day but could only manage 3 times a day mostly. Well now i'm trying to work in the 4th dose so maybe that will make a difference in the neuro symptoms. Hope everyone is feeling better today. Love and prayers, Jan ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.542 / Virus Database: 336 - Release Date: 11/18/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 Jan, Please don't ever apoligize, we are here for you, always. If you can't vent with us your Sarc family then who can you vent with, right. I hope the four times a day works for you,. my doc just incresed my neurontin dose that I was taking three times a day, and told me I could 100-200 mgs as needed inbetween for pain, that seems to work for me! How much are you taking four times a day. Hang in there Jan, we are hanging in there with you!! Love, Marla Re: Jan B, pioneer! Thanks to everyone for your prayers and well wishes. I haven't been thinking too clearly and sorry for having such crappy postings everyone here has enough problems without hearing about my family problems. I have to say that you guys have been a real family and compassionate friend when I have needed one the most. The foggyness in my head is getting worse and to tell you the truth this is all scaring me to death. I haven't felt this bad in a long time. I know the emotional stress is adding to the physical problems so I have let the emotional part of it go at least i thought i had anyways. I'm just trying to muddle through the best way I can. The neurosurgeon did increase my topomax back up to where it used to be before my pcp cut it down when i wentr in the hospital last time also increased my neurontin ti 4 times a day i used to have it prescribed 4 times a day but could only manage 3 times a day mostly. Well now i'm trying to work in the 4th dose so maybe that will make a difference in the neuro symptoms. Hope everyone is feeling better today. Love and prayers, Jan ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.542 / Virus Database: 336 - Release Date: 11/18/03~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 Marla, My neurontin i was taking 800mg three times a day now i'm trying 4 times a day to see if it helps with the pain and neuro symptoms. And thanks for being a very important part if my sarc family. Sometimes my sarc family is all I do have and I am so glad I do have each and everyone of you. Love and prayers, Jan GOD LOVES US, AND THE WILL OF LOVE IS ALWAYS BLESSING FOR ITS LOVED ONES................. ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.542 / Virus Database: 336 - Release Date: 11/18/03 Quote Link to comment Share on other sites More sharing options...
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