Posted 28 March 2007 - 02:28 AM
Crest/Limited,Reynaurds,Sjorgens,PAH,Pulm Fibrosis, 2/07
Posted 28 March 2007 - 02:49 AM
I'm sorry you have so many things to deal with now. I think the best possible thing you can do is exactly what you are doing -- seeing a specialist! They can advise you regarding treatments that are proven to work, and those that will make no difference at all.
The thing is, the sense of desperation is what makes us vulnerable to quacks with useless potions and pills. Often that's not so bad, if we have the money to waste and provided there are no side effects -- but the devastation occurs when we pursue them and end up excluding the real doctors and treatments that may actually help a bit. There are no rapid-fire pie-in-the-sky cures -- and anyone who promises somthing like that is generally not trustworthy. In fact, many of us have some complications that need no treatment at all in various stages of development, other than a watchful eye.
Sometimes we want to take something, or anything!, just to relieve the anxiety of worrying over it. Since you are seeing an expert, though, perhaps you can comfort yourself with the idea that you are hiring them to help steer you through the decision-making process regarding *valid* treatments for your condition.
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099
The most important thing in the world to know about scleroderma is sclero.org.
Posted 28 March 2007 - 03:05 AM
I'm so sorry that things don't seem to be improving. I certainly know how you feel to be taking all these meds and still not being able to run around the block. It's quite frustrating. It's good that you are seeing a pulmonolgist. Having a team of doctors taking care of their specialties is important; however, just as important is to make sure they each know the medication soup you're taking. Hopefully you're seeing a GI for the dismotility problem. One thing to remember is that one of the best things we can do for all of our symptoms is to keep moving. No matter how tired you are, try to get some type of exercise. It helps the whole body inside and out. It doesn't have to be much - just doing laundry is a type of exercise - but we need to keep moving. I put on my little backpack O2 tank when I do laundry and it sure helps.
Please let us know how your appointment goes in Miami. I hope they find something that can help you.
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)
Posted 28 March 2007 - 05:14 PM
I just want to send my good thoughts and wishes to you on your trip to Miami. I'm also sending an invisible package to you. It is full of bravery and courage and wisdom. Everything you need to feel in control.
Actually, take someone in the room with you to take notes, repeat everything back to the dr. to be sure you are understanding what he/she says as he means it. Ask for time to think things over if you need to and ask how much time you can have without causing more problems. Ask about side effects, advantages/disadvantages, what he/she would recommend for his mother/sister.
Good luck. Let us know how it goes.
Posted 29 March 2007 - 01:04 AM
Hang in there! YOu have gotten some good advice here. I take medication for motility problems and it really has helped. You are dealing with alot and I hope it slows down for you soon. It is overwhelming to deal with so much. Take one day at a time. I like Emmie's box. I send one also. Susie54
Posted 29 March 2007 - 01:25 AM
I sure hope your doctor visit to Miami goes well and you get some answers and treatment that brings you some relief! We will all be anxiously awaiting your update.....you are in my thoughts.
Posted 29 March 2007 - 03:58 AM
You say you're willing to try anything. Well, since my sclero started I have been treated by an alternative therapist (I also go to a "regular" Dr.) who does this massage that's supposed to improve the flow of energy in my body. I firmly believe this therapy, along with other measures and medications, has helped keep my sclero at bay.
Good luck with the pulmonologist!
Posted 29 March 2007 - 04:37 AM