Re: [TMIC] Fw: Prednisone/Neuro/Devic's
Oh how I wish we could all just share some of the other's burdens when hurting like this. I don't think I handle it any better than the next TMer - I don't always voice how I'm feeling or when I'm hurting. Not because of any specific reason. e I can't communicate how I feel as you have just done so perfectly. I know healing doesn't always happen and prayers aren't always answered to our likeing. Nevertheless, I am concerned for you and will pray that you are healed of this hated disease and that God's grace will touch you and your daughter. Love and blessings Patti - Michigan Grace <[EMAIL PROTECTED]> wrote: > > > My neuro's office phoned me today to tell me that he is adamant about > reducing my prednisone dosage due to the thrush infection. The nurse > explained to me that if uncontrolled, it could become systemic and cause me > no end of trouble. I've told him on many occasions that I would much rather > be taken out by superinfection, than to suffocate as a result of the Devic's > and he does understand my position. I realize that the result of my meds is > an extremely compromised immune sytem, but I also know that this is what is > keeping me from having another attack. I can't go through another relapse, I > just can't. I can't. I'm not mentally strong enough to face another bout of > paralysis. It had ascended up the cord during this last relapse, and I am > lucky to be getting around. I've got a 15 yr. old daughter that I have to > finish raisingshe's the light of my life, a good girl, good academic > record, active in school activities, but also manic depressive. I have to be > here f! or her, until she is capable of managing her disease on her own. > > I HATE THIS. I hate it and I hate me for carrying whatever antibody it is > that caused this infernal disease. I don't want it. I can't do it. I'm > sick and tired of stumbling around falling everywhere, peeing and pooping > myself, sleeping 24/7 because my meds make me so tired. I'm sick and tired > of people staring at me as I stumble around the stores leaning on my buggy > trying to Xmas shop. I want to be normal. I want my life back. I want > to wake up in the morning and go to work, come home, cook dinnerlike I > used to. The people in my life think that I am so strong---I'M NOT. I am > used up andtmic- sucked dry. I hate myself. > > I am too negative to participate in the list anymore. I am a whining, crying > baby. All of you are coping with so much more and are so brave---I want to > be like you, but I don't know how. I don't know how. > > Grace
Re: [TMIC] Fw: Prednisone/Neuro/Devic's
Alton, God Bless you. I have written Grace personally - I want to thank you for being so direct and right to-the-point! You're great. Linda in Bothell, WA -- Original message -- From: Alton Ryder <[EMAIL PROTECTED]> > Grace, call your doctor pronto. You need an anti-depression treatment right > away - a drug like Zoloft, or a session with clergy or professional. > > You are looking at the empty portion of your glass, not the full portion. > > If I remember correctly, your relationship with your daughter is so much > better than what is normally the case. > > The prednisone reduction can be as short as a week or two during which the > thrush can be squelched. People like myself on inhaled corticosteroids get > thrush quickly if we fail to rinse thoroughly after treatments. Talk to your > GP about the source of the thrush infections. It may be that you need > anti-bacterial rinses (Listerine or better) or anti-f! ungal rinses (e.g., > Swish-n-swallow, an Rx nystatin suspension) a few times a day. > > As for the people who notice impolitely your staggering, with a little more > maturity you won't give a damn. > > Keep in touch, > Alton >
Re: [TMIC] Fw: Prednisone/Neuro/Devic's
You said it, Alton! Grace, I too have been under some pressure from my endocrinologist to come down on my prednisone. Only problem is that when I do, my blood pressure goes with it! I can only go down about 2.5 mg per month or so! Blood pressure goes, balance goes, pain gets worse, the whole she-bang. But the endo. lady, quite rightly, worries about the long term negative effects of the steroids. So, I balance. Try to keep everything else the same when I'm going down, and avoid other stresses. Not the easiest thing in the world! But I plan on not being in the group who gets diabetes, osteoporosis, or muscle weakness. Just because it's a possibility, doesn't mean that I'll get it. And if I do, I'll deal with it then. I too have teenage kids, and I have to " be here now"- I may need to pay the piper later, but it's not later yet. Now, Alton is quite right--check in with your doc ASAP. We are here for you, but I think that you need some realtime counseling and hugs! And ask about the swish and swallow stuff. None of us came to this ready to deal magnificently with TM, believe me! We've all had to work towards it. We' re always working towards it. The old,"Life is a journey, not a destination..." So is living with TM Stay in touch, gal! Sam PS As I say to my hubbie as I'm staggering about (he says that on my worst day I'm better than him on his best day) Just think how I'd do if I'd had a couple of drinks! PPS Or as we say, "They're young, they'll get over it! Alton Ryder wrote: Grace, call your doctor pronto. You need an anti-depression treatment right away - a drug like Zoloft, or a session with clergy or professional. You are looking at the empty portion of your glass, not the full portion. If I remember correctly, your relationship with your daughter is so much better than what is normally the case. The prednisone reduction can be as short as a week or two during which the thrush can be squelched. People like myself on inhaled corticosteroids get thrush quickly if we fail to rinse thoroughly after treatments. Talk to your GP about the source of the thrush infections. It may be that you need anti-bacterial rinses (Listerine or better) or anti-fungal rinses (e.g., Swish-n-swallow, an Rx nystatin suspension) a few times a day. As for the people who notice impolitely your staggering, with a little more maturity you won't give a damn. Keep in touch, Alton
Re: [TMIC] Fw: Prednisone/Neuro/Devic's
Grace, call your doctor pronto. You need an anti-depression treatment right away - a drug like Zoloft, or a session with clergy or professional. You are looking at the empty portion of your glass, not the full portion. If I remember correctly, your relationship with your daughter is so much better than what is normally the case. The prednisone reduction can be as short as a week or two during which the thrush can be squelched. People like myself on inhaled corticosteroids get thrush quickly if we fail to rinse thoroughly after treatments. Talk to your GP about the source of the thrush infections. It may be that you need anti-bacterial rinses (Listerine or better) or anti-fungal rinses (e.g., Swish-n-swallow, an Rx nystatin suspension) a few times a day. As for the people who notice impolitely your staggering, with a little more maturity you won't give a damn. Keep in touch, Alton
[TMIC] Fw: Prednisone/Neuro/Devic's
My neuro's office phoned me today to tell me that he is adamant about reducing my prednisone dosage due to the thrush infection. The nurse explained to me that if uncontrolled, it could become systemic and cause me no end of trouble. I've told him on many occasions that I would much rather be taken out by superinfection, than to suffocate as a result of the Devic's and he does understand my position. I realize that the result of my meds is an extremely compromised immune sytem, but I also know that this is what is keeping me from having another attack. I can't go through another relapse, I just can't. I can't. I'm not mentally strong enough to face another bout of paralysis. It had ascended up the cord during this last relapse, and I am lucky to be getting around. I've got a 15 yr. old daughter that I have to finish raisingshe's the light of my life, a good girl, good academic record, active in school activities, but also manic depressive. I have to be here for her, until she is capable of managing her disease on her own. I HATE THIS. I hate it and I hate me for carrying whatever antibody it is that caused this infernal disease. I don't want it. I can't do it. I'm sick and tired of stumbling around falling everywhere, peeing and pooping myself, sleeping 24/7 because my meds make me so tired. I'm sick and tired of people staring at me as I stumble around the stores leaning on my buggy trying to Xmas shop. I want to be normal. I want my life back. I want to wake up in the morning and go to work, come home, cook dinnerlike I used to. The people in my life think that I am so strong---I'M NOT. I am used up andtmic- sucked dry. I hate myself. I am too negative to participate in the list anymore. I am a whining, crying baby. All of you are coping with so much more and are so brave---I want to be like you, but I don't know how. I don't know how. Grace
