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[history_grrrl]

How to begin? As I've mentioned on some other threads, I have a weird medical condition, something I was born with. It affects all body systems, though to different degrees in different people. My problems haven't been too bad except for vision. But in the last 6-8 years, new challenges have appeared. There's a cardiac problem that will require surgery at some point, and I'm meeting with a cardiac surgeon next week to discuss it. There's a musculoskeletal problem that hopefully won't require spine surgery if other methods can help; I saw a physiatrist about that and am following up with exercise, new orthotics, etc.

During the summer I had a terrible cough for about six weeks, and my doc gave me some meds but told me to get a chest x-ray if that didn't help. This morning I got the results: sinus infection and . . . possible signs of emphysema. Uncannily, I knew he was going to say this before I walked into the clinic. He's going to send me to a respiratory somebody-or-other. I am an ex-smoker, but also there's a correlation between my weird medical condition and emphysema, so that's probably a factor if this is for real. Since it may be related to the spinal problems, it's possible that surgery may be in the offing for that after all.

I am trying not to freak out. I have taken care of myself since my late teens. I am tough and independent. I don't usually fall apart, at least not for more than a few hours and never in front of anyone if I can help it. I live alone and have no partner. While I have some dear friends here, I live far from my family and most of my closest friends. Since I don't live in a major metropolitan area, I have to travel some distance to a bigger city for some of the medical stuff. But since I don't drive (related to medical condition), this takes longer and is more complicated than normal. One friend has already driven me to the big city and has offered to do this again, but some of this I need to do alone. (If I hear scary news from a doctor, for example, I'll want to be alone with that.)

I'm not good at asking for help, but I know I need help. I just don't know how much more of this I can handle. I wonder if I should see a therapist, or look for a support group for people with my medical condition, or what? Sometimes I wish for a partner who could wrap his arms around me when I'm scared and sobbing, but I don't have that now. But I'm really asking: folks, when it feels like too much, how do you cope? What do you do to get through it? I don't want to obsess about all of this stuff, but I don't want to be in denial either. I have so much work to do! How can I find some balance? Thanks for listening. Just posting this has helped.

[biomancer]

Hi History_Grrrl -

I think you answered your own questions - a group of people who all share the condition would be a good thing.  On the forum here we have the catch-all "Chronic Illness" thread.  Most of us on it each have something different but many of us find that the same coping strategies (don't over-book your day, plan in time to take care of yourself, be up-front with your chair and dean, dump the incompetent physician, etc.) fits lots of different health conditions.  Sometimes our thread is just the health-related version of the venting thread, but there's also a lot of good advice there.

Good luck with the physician visits, and hang in there!

[msparticularity]

Related to your need for some support but also for privacy, I wondered whether you could share some of that with your friend(s). You mentioned that you have had offers of support and help, but you also fear being with someone else if you get bad news and need to be alone to process. I am thinking that perhaps at least one of your new friends (where you are now) might be able to understand that and both be there for you, and also not violate your boundaries.

Edited to add: And I'm so sorry that you are having to deal with all of this, and that the logistics are complicating things for you over and above what you already have to cope with. I realized right after I hit "Post" that I was so busy trying to not overwhelm you with unwanted sympathy that I neglected to say this! :)

[ursula]

I'm really sorry you're having all thistrouble, H-G -- and in your tenure year too!

It might be a good idea to have just one or two people who know what's going on and who don't mind you leaning on them a bit.  They don't have to come along when you go to get news, but you can call them when you've had time to process (I'm another who needs time to process and explain things to myself before explaining to other people).  If things start to affect your work, the rest of the department just needs to know that you have some health issues.

But, for deity's sake, if your work is affected see HR and go on some health-related work reduction or sick leave.  Don't get into the position of having to explain later on why your work in one particular year suffered.

This is more PM territory, and if you feel like answering please do so in PM:  I wonder what the condition you have is.  It sounds a lot like what my dad had, and two of my brothers.  If it is the same, I can let you know some coping strategies my brother has used.