Jump to content
RemedySpot.com

Cath update

Rate this topic


Guest guest

Recommended Posts

Cathy, Oh Caitlin is so beautiful!!! Thank you for sharing her with us. I'm

so glad that you are doing so much better. Sounds like you are on the right

track now. Miss your posts, but so glad to read them when you do. Thanks

for all of the information that you send.

YOu know that you and Caitlin are always in my prayers. Take care and hope

the year 2001 continues to be a miracle year for you.

Love & hugs

Link to comment
Share on other sites

Hi Everyone:

Haven't posted in a while since things here are hectic (as I am sure

everyone else is also!)

Wanted to wish everyone a Special New Year and one with Peace and

Healing. I think of everyone often and try to read e-mail the best that

I can.

I am doing extremely well. Had my pulminary function test done 12/19.

Last one was in 4/99 at the time of RP diagnosis. 4/99 test revealed

some pulminary damage from the RP. When I went for the results 12/22,

my pulminogist almost fell off his chair. He stated I was his Christmas

miracle in that all the previous damage seems to be gone now. All

pulminary function tests were within normal limits. He has worked alot

with RP and states that he doesn't know exactly how this happened, but

he was thrilled. He definately feels that the Adipex (ephedrine) pill I

am taking along with anti-inflammatory meds and Minocin are the right

combination for me. He does recognize that especially the ephedrine is

controversial at best, but he wants me to continue on exactly the same

medications with no generic. Again, he has seen the difficulty with RP

and was so happy to see me doing so well. He stated no one would ever

guess that I have RP since I am doing so well.

No more episodes of the drooping eyelid or facial numbness right now. I

talked with him in length about it and he definately feels it is related

to the RP and vascultis and that anti-inflammatories and Prednisone are

needed to get me through the flair-ups. I have basically fired all my

docs except the primary care doctor and the pulminologist. Rheumy's

keep trying to put me on meth when I am doing so well and both docs feel

I'm holding my own. I'm not advising anyone not to have many docs, I

just personally have been beat up so bad by their treatment and lack of

knowledge that I don't have the energy to focus on what's wrong, only

what is right.

Of course, those of you who know me as an oldie with the group know that

the real reason behind my normal test results lies in the strength of

the Lord. God has certainly graced and blessed me beyond all my hopes

and continues daily to increase my faith. I am so thankful that I have

this group and do read e-mails even though I may not always post. I

hope that any information I may have might help someone in the group

achieve the level of wellness I am now living. I am still on some pain

meds, but can actually forget I am sick at times.

If anyone wants to know about the ephedrine as a possible treatment they

should try to find information and take articles to their docs. I can

say personally that I have tried to stop the medication 7 times now and

each time I did, I lost control of my breathing and had to go on large

doses of pred which still did not always control it. I do still lose my

voice at times and ears do get red, but much less now. Hopefully, God

will continue to heal my body and mind from this potentially devastating

disease.

Happy New Year again to everyone. Let this post stand as a reminder

that God is with us and that RP can be controlled. I have been very

sick from the RP but know am basically living a " normal life " ( Ha ha,

this one is for the oldies who know what I have been through). I hope

in the future more doctors will investigate treatment with Minocin and

Ephedrine because these have at least turned my life around.

God bless you all and wrap his arms around this wonderful RP family of

ours throughout the coming year!

P.S. included an updated picture of Caitlin. Can't believe children

grow up so fast.

Love ya,

Cath

Link to comment
Share on other sites

Hi Cath

First of all let me say how beautiful Caitlin is...she is growing up so

fast...please give her a great big hug from me, ok?

As for you Cath, all I can say is how proud I am of you... for all you went

through this past Summer, both emotionally and physically.. what a tower of

strength you are to me and to the group...when all seems lost, you are found

by the Grace of God and your beliefs... I am so happy you are doing much

better... please keep us updated as often as you can.

I'll never forget that you were one of my first contacts with this group and

your offer to personally help me and all the phone calls has pulled me

through most of the bad times this past Spring and Summer when I thought my

situation was hopeless. I'm very proud to call you my friend...Please

don't hesitate to call on me should you ever need my help...God bless and

keep you protected..

luv

your friend

Carmela

******************************

>

>Reply-To: Rpolychondritis (AT) e

>To: RP Group Rpolychondritis (AT) e>

>Subject: Cath update

>Date: Mon, 01 Jan 2001 15:24:43 -0500

>

>Hi Everyone:

>

>Haven't posted in a while since things here are hectic (as I am sure

>everyone else is also!)

>

>Wanted to wish everyone a Special New Year and one with Peace and

>Healing. I think of everyone often and try to read e-mail the best that

>I can.

>

>I am doing extremely well. Had my pulminary function test done 12/19.

>Last one was in 4/99 at the time of RP diagnosis. 4/99 test revealed

>some pulminary damage from the RP. When I went for the results 12/22,

>my pulminogist almost fell off his chair. He stated I was his Christmas

>miracle in that all the previous damage seems to be gone now. All

>pulminary function tests were within normal limits. He has worked alot

>with RP and states that he doesn't know exactly how this happened, but

>he was thrilled. He definately feels that the Adipex (ephedrine) pill I

>am taking along with anti-inflammatory meds and Minocin are the right

>combination for me. He does recognize that especially the ephedrine is

>controversial at best, but he wants me to continue on exactly the same

>medications with no generic. Again, he has seen the difficulty with RP

>and was so happy to see me doing so well. He stated no one would ever

>guess that I have RP since I am doing so well.

>

>No more episodes of the drooping eyelid or facial numbness right now. I

>talked with him in length about it and he definately feels it is related

>to the RP and vascultis and that anti-inflammatories and Prednisone are

>needed to get me through the flair-ups. I have basically fired all my

>docs except the primary care doctor and the pulminologist. Rheumy's

>keep trying to put me on meth when I am doing so well and both docs feel

>I'm holding my own. I'm not advising anyone not to have many docs, I

>just personally have been beat up so bad by their treatment and lack of

>knowledge that I don't have the energy to focus on what's wrong, only

>what is right.

>

>Of course, those of you who know me as an oldie with the group know that

>the real reason behind my normal test results lies in the strength of

>the Lord. God has certainly graced and blessed me beyond all my hopes

>and continues daily to increase my faith. I am so thankful that I have

>this group and do read e-mails even though I may not always post. I

>hope that any information I may have might help someone in the group

>achieve the level of wellness I am now living. I am still on some pain

>meds, but can actually forget I am sick at times.

>

>If anyone wants to know about the ephedrine as a possible treatment they

>should try to find information and take articles to their docs. I can

>say personally that I have tried to stop the medication 7 times now and

>each time I did, I lost control of my breathing and had to go on large

>doses of pred which still did not always control it. I do still lose my

>voice at times and ears do get red, but much less now. Hopefully, God

>will continue to heal my body and mind from this potentially devastating

>disease.

>

>Happy New Year again to everyone. Let this post stand as a reminder

>that God is with us and that RP can be controlled. I have been very

>sick from the RP but know am basically living a " normal life " ( Ha ha,

>this one is for the oldies who know what I have been through). I hope

>in the future more doctors will investigate treatment with Minocin and

>Ephedrine because these have at least turned my life around.

>

>God bless you all and wrap his arms around this wonderful RP family of

>ours throughout the coming year!

>

>

>P.S. included an updated picture of Caitlin. Can't believe children

>grow up so fast.

>

>

>Love ya,

>

>Cath

><< DSC00010.jpg >>

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

Link to comment
Share on other sites

Cath,

Glad to hear you are doing better. And thanks for sharing the picture of

Caitlin, she is beautiful.

Hugs,

Sandy

> Hi Everyone:

>

> Haven't posted in a while since things here are hectic (as I am sure

> everyone else is also!)

>

> Wanted to wish everyone a Special New Year and one with Peace and

> Healing. I think of everyone often and try to read e-mail the best that

> I can.

>

> I am doing extremely well. Had my pulminary function test done 12/19.

> Last one was in 4/99 at the time of RP diagnosis. 4/99 test revealed

> some pulminary damage from the RP. When I went for the results 12/22,

> my pulminogist almost fell off his chair. He stated I was his Christmas

> miracle in that all the previous damage seems to be gone now. All

> pulminary function tests were within normal limits. He has worked alot

> with RP and states that he doesn't know exactly how this happened, but

> he was thrilled. He definately feels that the Adipex (ephedrine) pill I

> am taking along with anti-inflammatory meds and Minocin are the right

> combination for me. He does recognize that especially the ephedrine is

> controversial at best, but he wants me to continue on exactly the same

> medications with no generic. Again, he has seen the difficulty with RP

> and was so happy to see me doing so well. He stated no one would ever

> guess that I have RP since I am doing so well.

>

> No more episodes of the drooping eyelid or facial numbness right now. I

> talked with him in length about it and he definately feels it is related

> to the RP and vascultis and that anti-inflammatories and Prednisone are

> needed to get me through the flair-ups. I have basically fired all my

> docs except the primary care doctor and the pulminologist. Rheumy's

> keep trying to put me on meth when I am doing so well and both docs feel

> I'm holding my own. I'm not advising anyone not to have many docs, I

> just personally have been beat up so bad by their treatment and lack of

> knowledge that I don't have the energy to focus on what's wrong, only

> what is right.

>

> Of course, those of you who know me as an oldie with the group know that

> the real reason behind my normal test results lies in the strength of

> the Lord. God has certainly graced and blessed me beyond all my hopes

> and continues daily to increase my faith. I am so thankful that I have

> this group and do read e-mails even though I may not always post. I

> hope that any information I may have might help someone in the group

> achieve the level of wellness I am now living. I am still on some pain

> meds, but can actually forget I am sick at times.

>

> If anyone wants to know about the ephedrine as a possible treatment they

> should try to find information and take articles to their docs. I can

> say personally that I have tried to stop the medication 7 times now and

> each time I did, I lost control of my breathing and had to go on large

> doses of pred which still did not always control it. I do still lose my

> voice at times and ears do get red, but much less now. Hopefully, God

> will continue to heal my body and mind from this potentially devastating

> disease.

>

> Happy New Year again to everyone. Let this post stand as a reminder

> that God is with us and that RP can be controlled. I have been very

> sick from the RP but know am basically living a " normal life " ( Ha ha,

> this one is for the oldies who know what I have been through). I hope

> in the future more doctors will investigate treatment with Minocin and

> Ephedrine because these have at least turned my life around.

>

> God bless you all and wrap his arms around this wonderful RP family of

> ours throughout the coming year!

>

>

> P.S. included an updated picture of Caitlin. Can't believe children

> grow up so fast.

>

>

> Love ya,

>

> Cath

>

> DISCLAIMER!!

> WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS

RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR

BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR

PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND

TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

>

----------------------------------------------------------------------------

----

Link to comment
Share on other sites

Cath,

I am still not used to your name!LOL I keep thinking

it is someone new posting. So glad something is

finally going well for you! You sure deserve it! You

and the Lord keep up the good work! What a pretty

girl Caitlin is! Hope she realizes how lucky she is

to have a Mom like you!

Lots of Love

Glenda

__________________________________________________

Link to comment
Share on other sites

Hi Cathy,

Caitlin is so sweet!!! Glad to here you're doing well. Hope that 2001 is

better for all of us. It's been quite a year for all of us. Take care and be

well,

Elaine

Link to comment
Share on other sites

WOW!!! Cath, you give hope to us all! You are truly blessed. It's so

reassuring to know that with all the mysteries of this disease, God can heal

us inside and out. We've taken care of the inside, now He's working on the

outside. Of course, HE may thing hot red ears are attractive, who know??

Again, Congrats! LOL, Judy O

Link to comment
Share on other sites

HI Everyone:

I am new to the group and just got this e-mail. Just

wanted to say that if God thinks these red ears are

attractive then I for one would like to give them back

to him.(HA)I always said God had a sense of humor

because he made me. dawn

--- JOstry93@... wrote:

> WOW!!! Cath, you give hope to us all! You are

> truly blessed. It's so

> reassuring to know that with all the mysteries of

> this disease, God can heal

> us inside and out. We've taken care of the inside,

> now He's working on the

> outside. Of course, HE may thing hot red ears are

> attractive, who know??

>

> Again, Congrats! LOL, Judy O

>

__________________________________________________

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...