Daughter post college has landed in the hospital with some auto immune disease. No diagnosis in site. Very depressed mom.
Oh dear, I am so sorry!
I am probably the worst person to ask about this, since I always put myself last. My younger daughter spent a week in the hospital with pneumonia when she was in first grade. My priority was only her, to be honest. I wore the same clothes for several days, the nurses brought me a tray and scolded me into eating. I was a mess. One night an angelic nurse walked in with a book, and said I had an hour to go home and take a shower and relax - she’d sit there with her and read her book. It felt great - and was probably the best shower I’d ever had.
Short answer, I guess, is that you are no good to your daughter if you are a mess or become ill yourself. She comes first, as she should. But try to enlist other families to help in the battle. It is very hard. Mine was a crisis situation that resolved itself relatively quickly. If you are in the for the long haul, however, you need to pace yourself.
I hope you get answers soon.
Thanks- even more depressing- she is in the Netherlands, where she married a Dutch man recently. 8 hour flight. She doesn’t want me to come, as I saw her several weeks ago in hospital. Lots of docs in the family- they are trying to get advice for her doctors.
My son has had two long hospitalization stays in the last 3 years. The first was for 32 days, the second was for 28 days. He was psychotic both times. Catatonic the second time. During the first hospitalization, I made the hour-long round trip to visit him every day but one. I didn’t do a very good job of taking care of myself. I ate junk food constantly and gained a lot of weight.
During the second stay, I didn’t visit him as often, on the advice of his psychiatrist. I made sure to keep up my running routine and I also worked in our home business. I did a lot better that time. I realized I needed to stay strong and think of the long-term, not just the daily crises. I also got a counselor - I recommend that highly. You have to learn coping skills or you’ll go nuts. Hugs!! I know it’s tough. 
I have twice a week counseling. I teach part time which helps. I also sell on EBAY, which is a good distraction as well.
Giving the perspective of the hospitalized adult child with multiple autoimmune diseases.
I can tell when my parents are incredibly anxious and worried and it makes me feel even worse. I constantly tell them that there is nothing they can do and we just have to let the doctors, meds, etc take their course. Worrying doesn’t help anyone. It’s taken about a year but I can finally feel them start to relax a little and it has taken a huge amount of pressure off me.
The advice my doctors have given to my parents is just to stay busy. We check in with one another at least once a day through facebook and they just have to trust that I am being upfront with them. I’d also recommend a counselor if you don’t already have one.
I will say though that my dad has made negative comments about the amount of medicine I’m taking and other things since he’s largely distrustful of pharma and related industries. I have threatened to cut off information from him if he continues to do so and he has stopped.
What do you mean by the doctors in the family are trying to “get advice for her doctors”?
Exercise.
Following Romani’s advice is a good idea. I’m sorry you’re going through this @fauxmaven. It’s so tough when our kids are ill, especially when the MDs are stumped and the child is weak and miserable. I’m glad that at least she has the support of her husband. I would definitely recommend you stay as healthy as possible and explore the options of flying over or at least skyping or face-timing with her. Take care!
Not to mention 5,000 miles away.
The distance doesn’t matter so much–if they’re not with you they’re out of physical touch whether it’s 2500 miles away or 5000 (my kids are both distances).
I would also prepare yourself for her never getting a diagnosis. That’s just the nature of the beast when it comes to autoimmune diseases. That doesn’t mean the doctors are incompetent and it doesn’t mean she can’t/won’t get treatment.
We’re very used to, in this country, being able to label everything and get some sort of “standard” treatment. That all goes out the window with complex diseases and it can be hard to change our mindset about how illnesses are “supposed” to go.
One thing that may be helpful (or not, I don’t know) is figuring out whether or not there are any similar illnesses in the family. Autoimmune diseases tend to run in families and may help guide her doctors.
When my husband first was diagnosed with non-Hodgkin’s Lymphoma (he’s now been in remission for over 15 years), I found a schedule helped a lot. I scheduled time for my own health (I actually hired a personal trainer to make sure it happened). I scheduled a daily “I’m in a state of panic” call to my older sister. I scheduled “worry time”. It sounds nuts, but the schedule made sure that I didn’t worry all the time, that I paid attention to my health (so that I could be there when he needed me). I scheduled half an hour of “I Love Lucy” (the funniest TV show ever) every day, too, right before lunch.
However, I’m also a somewhat rigid and mathematical person; I often believe there’s a single right way to do things. While this approach worked for me, I have no idea if it would work for someone else.
Agree with @romanigypsyeyes again–one can get pretty decent/excellent care even if the providers don’t have an official diagnosis by treating symptoms and using treatments for similar maladies. Also agree that exploring medical conditions of other family members may provide additional clues. Good luck & hang in there!
dmd77 I did what you did. H was diagnosed with a serious illness, fifty percent survival rate. A year of treatment that made him feel like crap. After neglecting myself, living on coffee and chocolate for a couple of months, I put myself on a schedule and worked out an hour every day. I vented to my mom daily.
Staying busy also helps. The kids were little so I had plenty to do with them. I tried to keep their lives as normal as possible.
FWIW when there were choices to be made, I tried to get H to make them. I had my own opinions and positions, but I tried not to impose them on him, just help him think about what to do, be supportive and upbeat. He vented to me, then I went out and ran for an hour! His folks were frantic and believed he would die. (Spoiler alert: he didn’t.) I mention that because this is a married, adult child. You want to help, but you also have to be respectful of her choices.
I cannot agree with this enough! Please keep opinions to yourself unless you’re asked. We still feel guilty, even as young adults, if we make a choice that contradicts our parents’ preferences. (At least I do)
It is the hardest part about being a parent (or any loved one), how to deal with the situation. I was sick many years ago, had a really bad infection and was in the hospital, and it was hard keeping my family away, including my dad (he was older and lived in Florida, didn’t want him making the trip). It is hard with a child because we want to be there and try and do something, even if we can’t. I wish I had great advice, but others pretty much mirror what I can offer, first of all that you need to be strong for your D if or when she needs you, the old stuff they gave us in therapy, the “oxygen mask on an airplane” is very true, to be strong for your daughter you need to take care of yourself so you can be ready.
Lot easier said then done, and I have to tell you, @fauxmaven, that I admire the way you have dealt with all the tough things you have had to face, you may not feel it but you are a very strong person,you have survived a lot of things other people would likely have collapsed, so you definitely have it in you, I have confidence in that. I agree with things like exercise and eating well, and finding things you enjoy to do to keep your mind on the positive things and not dwell on the negative. It doesn’t mean you shouldnt’ worry (wouldn’t be much of a parent if you didn’t:), but it also is about doing things that I think your daughter would enjoy hearing, if you talk to her and tell her you are doing X, Y and Z, I can bet you (as both a child and a parent) that it likely would cheer her up to know you are okay and living your life…
My thoughts and prayers are with you and your D.
I am back as a substitute teacher around 3 days a week, and I enjoy selling on E Bay. This is so much harder than having a son in prison!!
Hugs, fauxmaven. Keeping you in my thoughts and prayers.
Keep up the good work! If it were me, having a regular chat, even if very brief, with D every other day or every day would help. That way everything doesn’t build to the point that it is earth-shattering. If she were amenable, that might help.
Sort of the same thing as many of us wishing that our children who are travelling or living abroad would text “I’m alive” every few days. 
She is getting so discouraged…they are trying a new drug starting FRI. If that doesn’t work, I will be returning on an open ticket.