Posted 7/1/2015 8:21 PM (GMT -6)
Welcome to the board. Unfortunately this is a group no one wants to join, but it's a great blessing that it's here.
Your question is one that we all must address each and every day. It doesn't matter if a person was diagnosed a decade ago, or yesterday. We all have our tricks-somedays they work, somedays they don't.
I was diagnosed as a young kid. Is some ways you would think it would be a benefit-I've always had to cope, but honestly, somedays it is really, really, super, crazy, hard.
Like Vickie said, Endo does not define you. It is just a small piece of a puzzle that will now fit into your everyday life.
First, even though there is no real cure, knowing that you are fighting a disease might help. Find a Dr you can trust is paramount. Honestly, my med team, is one of my most important relationships. Knowing that we are all fighting together, allows me to feel some sort of control. Most of us on the board have a pain management doc. If you feel this will be a Dr that you will need, it's better to start looking for one now. Usually you will need a referral from you primary Dr, or the Dr that is treating you now. It can take MONTHS to schedule a new patient appointment, so you might want to jump on that. Again, for me, knowing that I'm doing something proactive, helps.
As for the friend issue, I am lucky that I was diagnosed so young. My friends have never known me any differently. But, I still do have to work to maintain good relationships. If we have plans, I try my hardest ( like we all do) not to back out. Since my friends do know me so well, most of our plans are pretty low-key. One of my best friends picks me up for a movie once a month. There have been times where I just feel to tired and hurt to want to see one, but once I'm picked up and I'm there, I really appreciate the effort-and usually have a good time. Game nights, paint nites, movies, and just hanging out does a lot to keep my spirits up. I'm in a book group, and many times when I've been inpatient, the book group will come to me. I might not have as many friends as I would if I was healthy, but they are great friends.
Another thing that has helped is to have activities and things to do on my calendar. Even though I'm inpatient every few months, I still want things to look forward to. When inpatient, I often write on the whiteboard the date of the next thing on my calendar. It gives me something to shoot for, and the Drs know that I'm fighting hard to get free :) Once I was discharged in the morning, and at a hockey game 3hrs away that night. Unfortunately, most of us know that pain is something in our future, but it helps me to know I can attempt to control something.
I wish I could give you some magic answer. Unfortunately, you will have to find your own way, what works for you. Just remember, you are stronger than your disease. It may not seem so now, especially since you are newly diagnosed. Allow yourself some time to come to terms with what is occurring. It's perfectly normal to retreat and be scared. But, the sooner you can establish some sort of control, the better. Just remember, it's totally normal to feel like you do. Each of us on the board have days where we feel that nothing is going our way. That's why this board is so invaluable. I try to be as upbeat and positive as possible, but I still post on here when I'm overwhelmed, tired, sad, and angry. The members here listen, offer advice, prayers, and support. I also attempt to do the same when others post and need help.
Stick around and let us know how you are doing. Asking for help is not whining, and it's not weak.
Single mom to my little man 11yrs old
38yrs old. JRA since a kid. Chronic Uveitis, pleurisy, pericarditis, intersticial lung disease, sjorgrens syndrome, Cushing's Syndrome, gastroparisis
Bilateral TMJ replacements due to bone fusion, port-a-cath, TPN(IV nutrition), antiphospholipid antibody syndrome(my blood fights itself).