Re: Hi Everyone

[Guest guest]

Hello Everyone!

Hope everyone has a great Super Bowl Sunday and I hope the game is a good

one for a change - otherwise I'll just have to watch the commercials! Thanks

to everyone for their good wishes, thoughts and prayers - am looking forward

to feeling better!

Love Ya,

Patty B.

[Guest guest]

Glad you took a good vacation but so sorry you are sick. Get well soon I really miss you. I haven't posted much lately because we have been doing work on the house. Was going to paint the bathroom but am going to have redo the flooring due to dry rot. Gosh owning a home runs into a lot of work! Being sick for a few weeks puts you behind too!LOL

Take care

Lots of love

Glenda

[Guest guest]

, your history sounds similar to mine (just add a whole bunch more disease - all incredible rare (as if I would do something common!). Yes it is so very frustrating, but I to believe they will find a cure in time to help us all! At least I keep praying they will! Hang in there! Love, Judy O Hi Everyone Last night I posted a long note but as usual it is lost somewhere incyberspace. Hopefully this onw will make the trip. I am sorry that Idont write more often but I have been having a hard time with theweakness and pain in my hands and joints. I went to the rhuemmy lastweek and he thinks the high sugars is my main problem right now. ButI think it is also from coming off the high doses of pred and thendown to nothing real fast. The cytoxan is still making my hair fallout all over the place. Right now my throat, nose and ears are all onfire and hurting but he wants to wait and see before putting me backon the pred. Wait for what? Till I end back in the hospital or in ICUagain!!!!!! Oh well I dont know about all the other new ones but Iam having a hard time keeping track of who is who. I thought we werenot suppose to have any added stress! HAHAHAH I am constantly goingback looking at the pictures and trying to remember faces to names. Icould talk to each of you all day long but the typing is hard rightnow. Maybe one day my mind and memory will get out of this fog and itwill be easier.It seems like we are all going through tough times right now,eitherwith ourselves or family members. I want each of you to know that Iam praying for all of you and hopefully we will all see better daysahead. I pray that God will send strength to the Arnold family asthey face the tough days ahead. My mother died at age 59 withdiabetes and heart related problems.I know we are looking for a link that we may all have to try andsolve this disease. I have also had endometriosis and 3 miscarrages.Both of my children were born premature. I have also had 3 backsurgeries from herniated disk and 2 years ago I had cervical disksurgery also. I was in the hospital last year for high blood pressureand a rapid pulse. They never could find out the cause so who knows .Sending each of you a big hug from Texas. luv,

[Guest guest]

,

Sorry you are having a rough time. Why did your Rheumy take you off the Pred? Are you being treated for the high blood sugars?

I can relate to your hair loss, I am also on Cytoxan and my hair has become very thin.

Sandy

Last night I posted a long note but as usual it is lost somewhere in cyberspace. Hopefully this onw will make the trip. I am sorry that I dont write more often but I have been having a hard time with the weakness and pain in my hands and joints. I went to the rhuemmy last week and he thinks the high sugars is my main problem right now. But I think it is also from coming off the high doses of pred and then down to nothing real fast. The cytoxan is still making my hair fall out all over the place. Right now my throat, nose and ears are all on fire and hurting but he wants to wait and see before putting me back on the pred. Wait for what? Till I end back in the hospital or in ICU again!!!!!! Oh well I dont know about all the other new ones but I am having a hard time keeping track of who is who. I thought we were not suppose to have any added stress! HAHAHAH I am constantly going back looking at the pictures and trying to remember faces to names. I could talk to each of you all day long but the typing is hard right now. Maybe one day my mind and memory will get out of this fog and it will be easier. It seems like we are all going through tough times right now,either with ourselves or family members. I want each of you to know that I am praying for all of you and hopefully we will all see better days ahead. I pray that God will send strength to the Arnold family as they face the tough days ahead. My mother died at age 59 with diabetes and heart related problems. I know we are looking for a link that we may all have to try and solve this disease. I have also had endometriosis and 3 miscarrages. Both of my children were born premature. I have also had 3 back surgeries from herniated disk and 2 years ago I had cervical disk surgery also. I was in the hospital last year for high blood pressure and a rapid pulse. They never could find out the cause so who knows .Sending each of you a big hug from Texas. luv, 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

[Guest guest]

Sandy, I think the Dr. took me off the pred is because I was having

all kind of problems on it. I started out on 80 then ended up in the

hospital in ICU with breathing problems. I was on 1000 a day for 4

days then went down to 280 for a month then gradually down to nothing

in Feb.. He never mentioned 5 or 1mg. like everybody else is doing.

After 10 for a week he said no more. I am seeing the Dr. that Dr.

Trentham recommended for me to see. So I have nothing to go by but

what he says. I ended back in the hospital in Dec. with sugars in the

600. I was on a sliding scale for insulin shots but last week my reg.

Dr. put me on glugopage xl . But I am still having sugars over 200

off and on during the day. They always said I was sweet .HAHA The

rhuemmy is scared that the high sugars are causing me more problems.

I was one of the fortunate ones who was diagonsed with this right off

the bat. I had red painful ears in July and the ent treated me with

pred and felt that this is what I had. The only problem was that

nobody knew how or was willing to treat me for it. So since then its

been down hill ever since. But enough is enough and I have had my

share so now its time for it to go on.Spring is here and my flowers

are calling me and the birds are singing. hahah Oh by the way I asked

the rheummy how many patients at his office had this and he said I

was UNIQUE the only one. Congratulations I am finally UNIQUE I can

hardly control myself. HAHA Let me get out of here before I brag on

myself too much. See ya, NANCY

[Guest guest]

, we're all so unique, we can't stand it! Hang in there! Love, Judy Re: Hi Everyone Sandy, I think the Dr. took me off the pred is because I was havingall kind of problems on it. I started out on 80 then ended up in thehospital in ICU with breathing problems. I was on 1000 a day for 4days then went down to 280 for a month then gradually down to nothingin Feb.. He never mentioned 5 or 1mg. like everybody else is doing.After 10 for a week he said no more. I am seeing the Dr. that Dr.Trentham recommended for me to see. So I have nothing to go by butwhat he says. I ended back in the hospital in Dec. with sugars in the600. I was on a sliding scale for insulin shots but last week my reg.Dr. put me on glugopage xl . But I am still having sugars over 200off and on during the day. They always said I was sweet .HAHA Therhuemmy is scared that the high sugars are causing me more problems.I was one of the fortunate ones who was diagonsed with this right offthe bat. I had red painful ears in July and the ent treated me withpred and felt that this is what I had. The only problem was thatnobody knew how or was willing to treat me for it. So since then itsbeen down hill ever since. But enough is enough and I have had myshare so now its time for it to go on.Spring is here and my flowersare calling me and the birds are singing. hahah Oh by the way I askedthe rheummy how many patients at his office had this and he said Iwas UNIQUE the only one. Congratulations I am finally UNIQUE I canhardly control myself. HAHA Let me get out of here before I brag onmyself too much. See ya, NANCY

[Guest guest]

In a message dated 4/20/02 6:48:16 AM Pacific Daylight Time,

sharynn@... writes:

<<

I do have one thing he is checking right now and that is the total

weakness in both my legs >>

Sharyn, Yes, I have very dry hands. They drive me nuts. I just keep

putting cream all over me. LOL

I also have the burning pain in my knees and feet. My feet have tumors in

them. They are in a place where all the mucscles and nerves attatch and

surgery would not be guarenteed. Just found out Thurs that the RP is in my

knees.

I have muscle weakness all over. Mostly my legs and arms. Can't blow dry my

hair. If I squat down to get something , I can't get up. LOL I found out

long ago that I can't take the cholesterol medications. They caused muscle

damage. I just had a whole series of tests done to check how come I have

this. They all came back normal. My rheumy told me Thurs that it is

probably because of the pred. Breaking down the muscles. We all need to be

in some kind of exercise program. Even if is it just lifting our arms over

our head or raisng our legs. The pred can weaken the muscles. Gee, don't you

wish the dr would have told me this before I started taking it.????

Tapering down on the pred I can feel it worse. I also have fibro and that

doesn't help. Without getting enough sleep, my muscles never repair

themselves. LOL

Things do get better though. YOu just hang in there and know that we are

here for you. Rest if your body tells you too.

Hope you have a good weekend.

Think Rich and I are going to Sacramento today to go to a few outlet stores.

Going to try to force myself to get better quick. Hey, I have Disneyland

coming up on Wed. I must be ready for that!!! I Can't wait!!!

hugs

[Guest guest]

Welcome Tammy! I also have a 19 year old daughter, w/cf. She is also

very healthy. She just had her first tuneup in almost 4 years. She is in

college too. I have a son, Nick, he is 21 w/o cf. He is a Senior at Cal Poly

Pomona. He is doing great, always on the deans list, etc. We are from Orange

County CA.

love,

[Guest guest]

Jane,

Along with you, I'm looking forward to the cooler days of autumn.when we can get back outside here in the south without so much discomfort.

Take heart with your cornea not healing as fast as expected. It happens to be imbedded in the middle of a stem cell nursery in the limbus, a regeon between the white of your eye and the cornea. These stem cells migrate to the outer layer of the cornea (epithelium) and help regenerate the tissue every 7 to 14 days. I can attest personally to the cornea's regenerative powers; About 6 years ago, my right cornea clouded up for some unknown reason, and my regular opthomologist referred me to a cornea specialist for a cornea transplant. However, the specialist felt that with the help of steroid drops and a little time, the cornea could clear up on its own. To our delight it did and is clear to this day. So with the help of added stem cells to those youu are already blessed with, your chances for a good recovery are probably better than you might think.

Good luck to you. I'll be seeing a few specialists starting next week and going into September. I'll hope and pray for the best for us both.

Jerry/Mississippi/54/IPF/dx April 05Who believes that hard times help us appreciate the good times even more.

Subject: Hi EveryoneTo: Breathe-Support Date: Saturday, August 15, 2009, 2:14 AM

Hi to Everyone! Especially the newbies!

I haven't posted too much cause I have been way too busy. I am glad that it is almost September and then it will be October and our get-together! I have too many doctor appts in September, But I have been traveling back and forth between Dalton & Chattanooga to see the eye specialists there. I had my left cornea surgery on July 10th and it is not healed up yet. I saw the cornea surgeon today along with the other doctor there and he has prescribed some new drops. I am now putting 3 different kinds of drops in the left eye to help it heal faster. (even though it has only been 6 wks I think) The surgeon has prescribed a new drop that I have never heard of. When I checked out of the office there, they gave me a sterile,, sealed dropper bottle to take with me to the hospital for a blood draw. I went to Memorial Hospital in Chattanooga. I went to the lab,,

they drew the blood (3 tubes) and told me to wait 45 minutes to get my drops mixed. I waited and sure enough another technician came out with my drops. These drops are using my own stem cells to help heal the cornea where the scar tissue had been scraped. At night when I sleep I have to tape it shut since I wear a C-Pap. I have to keep those drops refrigerated. 4 times a day. What will they think of next. I have never even heard of this before. Of course, I have heard of stem cells but not putting them in the eye. They really feel nice & cool going in the eye.

The weather has changed a little here. The humidity is not as bad as it was. It had been very wicked this summer. I just hate it! We need some more rian!

Joe, I wanted to tell you that I made my appointment with Dr. Kershaw for Sept 25th. I already had an appointment on that day with Dr. . But he is moving the end of the month, Are you & Joanie planning on attending the support group meeting on August 20th? I am planning on going. I hope to see both of you there.

Take care everybody.

Toodles!

Jane UIPIPF 12/1998 Dalton, Georgia aka pianolady_musicgirl