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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.
I suspect what the doctor says and what the patient hears are often two very different things.
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 can't believe I found this site! I am not alone after all!
Mothers are very special people and no matter how long they are in our lives - it's not long enough.
This month we are excited to announce the Sjögren's community, which already has many helpful, supportive members.
I still hope to die of something else other than kidney cancer such as very old age
Take each little victory and know that this is huge.
This website is full of information and encouragement. For me it provides a sense of normalcy. A place where people actually get you!!
People talk about overcoming grief. I don't think that's possible. However, it is possible to keep grief from overcoming us.
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.
Smart patients has provided me with a wealth of information which I am thankful for. Thank you to you all!
I'm so grateful for this site! So many questions have been answered here for me that I never realized were a part of Sjogren's
I GUARANTEE no one was ever on their death bed knowing if they had a different doctor they'd be living a longer life and said, "well at least I didn't hurt my doctor's feelings by getting another opinion."
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.
Save for later is a new feature that gives you a place to store posts that you might want to refer back to.
I struggle with fatigue all the time. I have to start Wednesday preparing for church on Sunday.
this is the best sharing place I've found in the four years since I've been diagnosed. Nice, understanding, and positive people.
I've tried to live by the motto, "The absence of bad news shall be taken as good news."
It's a wonderful opportunity to learn from experts in the field and to meet other patients and families affected by Sjögren’s.
I try to control stress by living one day at a time. Worry about things out of my control is a waste of time and energy.
I advocate strongly for my daughter, but sometimes her strength & confidence blow me away.
I hope everyone switches to the term Sjogren's disease. Change can be slow, but this is a much more accurate term. Sjogren's is a well characterized disease. It is closely related to lupus and RA.
If you have Stage IV cancer and aren't a little anxious, you don't understand your situation.
Thank you to everyone for their contributions to this site. it's amazing how much I am still learning after all these years.
How do you help your health care team better understand the emotional impact of illness on your life?
I can't change my past, but I can build good things on it.
You might want to consider requesting a referral to a palliative care specialist. They have lots of tricks up their sleeve to manage pain.
I like the diet "If God made it you can eat it." Basically it means don't eat processed food, only whole food. Paleo was recommended to me by a rheumatologist, but as several others mentioned I do better with SOME rice and carbs.
I encourage you to do the research, pay attention to what feels right for you and go with that.
SP feels like family...like the aunt who loves you unconditionally, the one who wants to hear what you have to say, the one who is always available no matter what time of day!
I'm an unrepentant gimme my dam data person. For those who think I'm cursing, which I'm known to do from time to time, dam stands for data about me.
My current neuro is a sweetheart, and listens to me.
Please never forget that you need support as much as your dad. There are folks here with very similar experiences, and it's a safe place to speak your heart.
One minute earlier their child didn't have a disease, and now they do. That is why parents are overwhelmed. It isn't because of the pamphlet or the internet or the binder or the follow-up appointment.
I was delighted to see this new group because I was feeling isolated. I was wondering if anyone suffers like me. If so, what do you do to help it?
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.
Today is the day they said I wouldn't live to see. Today is my 2nd cancerversary. I'm two now.
Are there any other caretakers dealing with a patient who has 2 separate cancers and how they cope with the patients needs plus the stress?
Both of you are still trying to come to terms with your new situation. Give yourself some slack. You are a great caregiver just by staying by his side.
Does the RCC medical community know that we exist, would it be to our advantage if they could "use" us in a good way to harness our strength, or our numbers or our something that I can't think of to help us manage this disease better ?
You can't get anywhere in this business without knowing your biomarkers.
Getting a second or third opinion from another couple of oncologists will also give you perspective, and there is no progress without perspective.
There is so much emerging science today, and that's a good thing. But the pace and sheer volume of it is bewildering. You can easily feel at sea without an oar.
I'm wondering how a patient could drum up some interest in researchers conducting more research and clinical trials for a particular disease.
One of the nicest things about SP is that it doesn't isolate people according to disease but facilitates discussion across communities.
SP folks are an amazing blend of kindness, intelligence and experience!
Fatigue is my biggest concern with Sjogren's. I am tired every day, and I need a minimum of 9-11 hours of sleep every night to function. Haven't found anything that helps yet.
My neighbor has pancreatic cancer which is quietly in remission. When we see each other it's, "Hey, how are things?" and "It's another day!" like a secret handshake of finding the joy and living in the moment.
I always say that my life can be described as anything but boring.
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