I also finished the two "self-help" books that I was reading, one from the patient's perspective, one from the caretaker's. I found both to be really illuminating. It's nice to know that this is hard - really hard - for everyone who has to live with it and that everyone deals with it differently. It's nice to not feel so alone, so isolated, as if I'm the only person dealing with a scary diagnosis that isn't handling it perfectly. Now I can see that no one handles it perfectly and that it's a process and a process that I won't just go through once and have it down right. I also went to my first PH support group on Saturday. It was great. BF, my dad, and A., my step-mom came with me and even though there wasn't anyone there who was even close to my age (except for the nurse advocate who's an expert on PH and goes there to answer general medical questions and help out wherever she can without giving any specific medical advice) I found that I could still relate to everyone there, even though most were twice my age. It was good for me and hopefully for my family to hear the struggles that these women still go through and I'm sure it was good for BF to hear from some of their husbands who care for them.
My health still isn't great, but I don't know if it'll ever be great. My breathing is better, I haven't been needing the oxygen nearly as much, but my back was terrible last week from my hips all the way up to my shoulders and then when I thought the back pain was getting better I started having chest pain. It's a weird pain, sometimes it's sharp, sometimes it's diffuse, and it moves around a lot. I don't see my pulmonologist again for another month, but I'm going to ask my rheumatologist about it when I see her next week. I'm hoping that she'll have some answers for me at this visit; the last time I saw her she didn't have all of the data from the tests they did at the hospital and she wanted a slew of new blood work done so that she can make a decision about putting me on a cytoxic agent if I have interstitial lung disease. Doesn't thrill me, but if the drugs I'm on now aren't doing a good job of keeping my autoimmune system under wraps then I guess I'll just have to suck it up and take the chemo.
On an unrelated and totally positive note, A. is in her last month of pregnancy now and soon I'll have a little brother or sister to be elated about. I really can't wait, I feel like a little kid. It's just going to be nice to have something this positive happen for all of us after all of this crap. And I've never had a baby around, let alone had this easy access to it! And I think that just maybe it'll be what BF needs to see to agree that I'm capable of taking care of a baby, that my illness wouldn't leave it all on his shoulders if we went with a surrogate and had one of our own. Wishful thinking probably, but I can hope, right?