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But what about that time before approval? Let's talk about the basics of compassionate use and expanded access. Who is a good candidate for unapproved therapies?
I suspect what the doctor says and what the patient hears are often two very different things.
Mothers are very special people and no matter how long they are in our lives - it's not long enough.
I try my best to live in and enjoy the moment. Sometimes even living in the moment gets scary, but it is easier than living in fear of the future.
If you have Stage IV cancer and aren't a little anxious, you don't understand your situation.
I can't believe I found this site! I am not alone after all!
You have chosen such a tough profession with some terribly hard moments. And it sounds like you are meant for this work-taking it to heart in addition to learning the science.
Save for later is a new feature that gives you a place to store posts that you might want to refer back to.
Today is the day they said I wouldn't live to see. Today is my 2nd cancerversary. I'm two now.
Thank you to everyone for their contributions to this site. it's amazing how much I am still learning after all these years.
I felt a tremendous emotional rush, crying, and when I carefully reached up to touch my eyes, there were actual tears gathered there! This was miraculous because I hadn't had tears appear when crying for a decade.
smart patients and smart physicians definitely help the odds
So far, scans are good and doing much better than I was on chemo. Fingers crossed and praying.
How do you manage your friends expectations of a relatively invisible illness? I struggle with this frequently and would love to hear other people's experiences.
You already have the makings of a wonderful doctor because you are already taking into account your patients' feelings.
I just wanted to reach out and love to be able to talk to somebody that's been through a similar situation.
Journey or quest works for me. I'm an avid reader, story and metaphor person. To be called forth on a journey begins a fairytale or quest narrative.
I love this site: it tells me I'm not alone. That means a lot.
Because at the end of the day, you are MUCH more than Sjögren's!
Smart Patients let me know I am not alone and provide me with encouragement, strength and hope one day at a time.
I am so fearful about the future. I'm glad I found this community and I think it will be helpful.
I have a very youthful looking bladder too, thanks to the botox.
I agree, this illness is at least 50% mental. I, too, have found a lot of peace and calmness with yoga.
Your personal story is inspiring and I thank you for the incredible amount of knowledge you've shared through this forum and on your website!
Our wonderful imaginations can take us down some dark paths before the truth comes to illuminate what is real.
I think having a counselor of some sort to talk about our feelings, fears, and emotions as we navigate this difficult life with Stage IV cancer is a wise choice.
The reports were incredibly positive and totally unexpected by everyone, including my great doctor.
I'm not a long term survivor, yet, but I guess you can say I'm an aspiring one.
Don't be afraid to speak up, to learn all you can, to ask questions, to change support people.
It helps just realizing I'm not the only one going through this and that I can overcome it!
How do you help your health care team better understand the emotional impact of illness on your life?
I'm visiting a new doctor for the first time. What should I do and/or need to know to show up the most prepared for the visit?
entirely different experience. I had a very traumatic labor with my daughter and it lasted 36 hours. This time I was in labor a total of 7 hours and I pushed for maybe 12 minutes. We chose to bottle feed right away and I feel really good about it.
I think it is important to discuss what congress is doing so that members may be inspired to write their representatives.
One of the biggest ways our communities grow is through our members spreading the word.
You've found a great group here of people going through the same thing. For me, knowledge is power, so I research it all and want to be prepared.
What do you tell your employer and when do you tell them?
So what kinds of symptoms are most distressing for you?
Music is still a balm to my soul and a joy but I have learned to take it less seriously and enjoy it even more.
There are labels for each arrow which reference most of the symptoms SjS patients can experience. I highlighted the ones which are problems for me and showed it to my husband. He was quite startled to see the pervasiveness of my medical problems.
Any ideas on how to handle Fibro naturally?
A Sjogren's soulmate gave me advice on a mouth spray to stimulate saliva.
One of the worst symptoms I'm having with Sjogren's is very dry and burning mouth. This makes me very frustrated and I cry all the time. Does anyone have something that might work?
I have no idea how I found this site 2 years ago. God must have brought me here to all of you. Most of the time I feel so alone but then I can come here and I am among friends once again.
I also have the most anxiety after the scan and before I get the results. Once I ended up in ER cause my heart was going nuts from the stress.
You are such an inspiration! You've proven you have a great partnership with your doctor and I'm glad you trusted your instincts.
You need to find a good rheumatologist. The same thing happened to me.
I find meditation helpful, however you define it. Just quiet time to relax, stretch, be alone.
It drives my husband crazy that people think he must be fine because he has hair!
There is just a common belief that if you don't have hair, it is entirely believable that you have cancer. Otherwise, whatever you say is going against the common knowledge.
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