((((Barb))))) I'm so sorry. I remember when I went through all the hepatitis interferon crap and they told me I wouldn't live past a year and got so sick on the therapy. I had things coming out every part of me and my poor husband could hardly keep up with me. And the four am trips to the hospital for hemorrhaging and pain were horrible on him and his job. I had a psychologist fortunately that kept me going, but I found out later that she had cancer. I'm glad I didn't know then. Life was just lousy, and it is sometimes. Sometimes the pain meds made me depressed and too tired. I slept through life. I cut back. That made me depressed too.
The social worker sounds like a real idiot. Unfortunately she will get her share in life too, for those who can't learn from others are destined to feel. As for illness though, there is no fair. I know you are worn out and frustrated. I wish that you could try a different health care place, for I feel that they are just stuck in the mud. Mayo in Florida has been good, and Moffitt in Tampa is where my stepmom went for her stem cell transplant for multiple myeloma and she really had a good experience there. She said it was like an assembly line, they do so many, and they have done a good job. I'm not doubting up there. I remember the attitude at the big New England medical centers with their world reknown docs and they nearly killed my son over a simple penicillin allergy by overanalysing it. Now he has epilepsy.
I know you feel like things are hopeless, and endless treks to doctors are just futile. I felt that way, but finally found one doctor who really cared about
me. He wasn't the best doc in the world, just a regular doctor, but he cared, and that was all it took.
You mentioned a bone marrow transplant a while back. Is that still on the table? Most people I know who have had it are doing pretty fabulous. Is it the lupus now?
You are so blessed with a loving family who cares for you and you so deserve it. Feeling lonely and worried about
your family is a luxury you haven't had much in the past, since you've been fighting so hard. The only thing that I can say is what my psychologist told me, is to take every day one day at a time, make as many enjoyable minutes as you can, no matter whether you are ill or not (this is advice for healthy people too) and focus on them and focus your daughter on them and your husband. We played board games, had barbecues in the backyard with my son's friends, and I would hand out candy (wishing I could have made cupcakes) and just try the best you can to restore some normalcy without overdoing it. I have a swing I got at lowes with a canopy to block out the sun that folds down into a bed, or I can sit on it. Stuff inside can be fun too. I know your daughter isn't feeling well either. I remember after my mom's car accident, some of the best times I ever had was laying next to her in bed watch tv. We were never that close again. She talked to me, really talked to me, about
all kinds of things, growing up, when I was little, what was happening to some extent. She had broke her back and her face was wired together. She was stunning before, she lost it, and they told her she'd be a quad, then in a wheel chair. She ended up being able to run and fully recovered. Her docs gave up, but her physical therapist didn't.
I wish I could help. Email me if you want, maybe we can talk on the phone. I'm on this anti-TB therapy now and feeling alot better, though my mind is all over the place. At least I have energy and clarity, no focus. I emailed and called some places like Mayo and actually found out it they might be able to help me, had any studies going on, whatever. I know it is hard to do now, but in the future, when you feel up to it and lonely, maybe you or your husband can make some inquiries and see if you can speak to a doc or a nurse over the phone, see if they would do anything different. My grandmother also used Cancer Treatment Centers. They have a whole psychological, diet and everything type approach. I don't know.
I hate to hear you so down. Dont' feel alone, I am here, alone too at home, afraid I'm going to spread TB everywhere. You're right, sometimes life just bites, but then there are those terrific moments, usually with our family. I haven't hugged my oldest son in two years or more now, he lives so far away. And I miss when the kids were little and I wasn't so sick. But NOW is more important, and I have to make the most of that. Just remember we love you and you are not alone. My email is in my profile if you ever need it. Maybe you can find a good old movie and try to explain to your daughter why it's good. That always is a challenge with my son!
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn