Just reading this now and so glad you are feeling better. I understand the need to cocoon yourself while you grieve and come to grips with it. Have you been able to find any online support groups with your condition?
SouthernHope: So…I reread your post. Quoting my mother: The longer you live you will live longer. If your doctor, who you have always gone to and probably like and trust…get another opinion. Get a new opinion on emerging treatments. I do not mean change doctors. One thing that I have has new treatments. I met the doctor in charge of the program at a wedding. My son’s wedding. If I need him he is available to me with a 12 hour notice. (I would be flying back east.) He was from the bride’s side.
I fly for medical appointments and have been doing so for 17 years. We have also flown fir our kids medical appointments, as they have chronic medical issues local docs haven’t had much success with.
Fortunately, we are able to have some fun on these medical visits and the docs have done a great job and are happy to keep in touch via email.
I have also been attending medical conferences for the last 11 years, so I keep up on what’s available and know many of the top MDs and researchers. It helps me feel like I’m doing all I can.
@SouthernHope thank you for starting this thread. My advice is to take it one day at a time- which on some days is easier said than done. Sending hugs your way to help you get through the tough times.
Like others on this thread, I have a disease that causes me to go to the doctor for my ‘maintenance’ appointments. I’m pretty open about it because I think it’s one of those diseases that needs to be talked about. I have the colon cancer gene (familial adenomatous polyposis). I have known about it for over 20 years, had the last bit of my colon removed about 13 years ago so I don’t have to worry about ‘colon’ cancer; just have to worry about the other 5-6 types cancer you can get with this disease (brain, thyroid, pancreatic, small intestine, stomach, bile ducts, etc.) of course the chances of getting these type cancers are slim, but I still go in for annual checks- thyroid ultrasounds, upper GIs, etc. I was on a great schedule- handling everything- doing upper GI scopes every even year, camera pills every odd year and then last year got a new doctor. So far I have had 3 Upper GI scopes in the last 9 months and he wants to see me again in 3 months for another one.
For some reason, he wants to keep scoping me as he continually finds polyps in my stomach and duodenum which are precancerous. Again, nothing abnormal for me. But having to see him every quarter is driving me crazy and making me think about this stupid diseases more than I want to. darn it! Of course some of this is also tied to my H’s own cancer history over the last 3 years- rectal, then anal, then Paget’s disease.
Like @romanigypsyeyes said not everyone is open about their challenges. Sometimes it’s just a matter of finding the right group for help- either online or in person. This board helps me a lot. I tend to lurk and the advice from those that post may not be for me specifically, but it helps to read other’s thought processes and ideas on how to cope.
Just remember that we are here for you and that it is okay to have a good cry- but not too much. 
Yes, sometimes I and H and kids have short pity parties and then move on with life. It is amazing how many people have something or another that causes pain or a chronic health condition that does or may worsen. The more folks you get to know, the more you realize have SOME medical burden. In our nuclear family, all 4 of us have chronic health issues that affect us more some days than others. Several of my neighbors are cancer survivors, another neighbor has MS or MD, a friend’s S has Down’s Syndrome.
Mostly I count my blessings that life isn’t worse or harder and that I’m still around and may yet live to see my kids in serious relationships and perhaps meet any grandkids. I know others who struggle more and have constant pain and some constant breathlessness and really feel for them.
@ChuckleDoodle, my college BF has FAP, too. Wasn’t dx’d til his 30s and considers himself lucky to be here. Has has a number of surgeries. When he was dx’d, his parents were also tested for the gene. Turns out his dad had colon cancer and the gene.
@SouthernHope I’m glad you came to CC to get some support and I’m also happy that you feel a little better today. I’ve always enjoyed your posts because you are so kind. Please know that I’m sending you hugs and wishes for peace from my corner of the internet.
What a wonderful thread! When I start feeling sorry for myself because of my son’s schizophrenia, I remember not to say, “Why me?” but “What next?” and that has helped greatly.
@MaineLonghorn I like that “What next?” mantra. I will have to try that. 
SouthernHope, I too have a long term condition that causes a great deal of pain, and I have had it since I was a teenager. But here is the kicker. No one knows what it is. I have seen countless doctors, specialists. Done Mayo, done research hospitals across the country. Every doctor I have seen comes up with diagnosis (not the same one every time, although there have been repeats) in the first visit that they then have to back off of when none of the testing supports the theory. It has gotten worse as I age, but then doesn’t everything? So far, it does not appear to be life threatening, but since no one knows what it is, no one can say what the future holds. I work hard being positive, I love my work, my husband, my kids, I have stay in shape, I have hobbies I love. But there are days I just want to sit on the floor and cry. I want to feel sorry for myself, I want some one to feel sorry for me. I want some answers. When those come along, I have a good cry, eat crap for a day, watch old movies, cry some more, go to bed early and get up in the morning and start over. I give myself ONE day, and then I pick up and go back to counting my blessings.
@lololu I’m going to PM you so as not to derail the thread but check your inbox shortly
I haven’t read the whole thread yet but I must say people who deal with chronic conditions amaze me. I am not necessarily a “nice” person but I save whatever niceness I have for folks that have challenges in life. People like that are just stronger and braver than normal folks. You are allowed to feel low now and then. Everyone does and most times it is something minor not a real reason. If you can connect with any support network or people who can relate maybe that will help. For the other folks with similar conditions all I can say is I admire how brave you are for being productive members of society against the challenges. Your ability to be happy and productive inspires me not to be such a baby about the things that bother me.
Hugs to you. You are not alone. Strength and courage to you.
I agree with @GoNoles85 that it’s just awesome how skillfully some people deal with chronic conditions – especially the frustrating sorts of conditions where the severity can vary from day to day or week to week, like multiple sclerosis or lupus. It involves so much effort and so much stress.
I hope that everyone in that sort of situation has somewhere where they can vent when they feel the need.
You never know who is dealing with chronic conditions which is why I think the advice to just be nice and good to everyone (within reason, of course) is a good philosophy.
I mean, unless I’m having a pretty bad lupus flare day (and am thus in my wheelchair), you’re not going to notice that I’m sick. I, like most people with chronic conditions, show no outward signs.
So be kind. Like many others have said, you never know what someone is quietly, invisibly fighting.
@SouthernHope and others dealing with chronic health problems so very sorry to read about your challenges. Sending all of you hope, peace and wishes for better health in the future. I appreciate you sharing and really makes me remember to be thankful for my currently decent health. I know a few people IRL struggling with physical and mental health challenges and see how difficult and isolated it can be.