Medical Mayhem
It really bothers me when doctors try and move your appointments around. The last time I drove my wife down to UCLA, which is about a four-hour drive one-way, her rheumatologist scheduled some scans that she wanted done there at UCLA. That was fine with us, and we took the appointment time they gave us and we were off.
I scheduled another day off of work so I could drive her down there, and she made sure her schedule would work and that there would be someone to watch the kids.
Then two weeks before the date, the doctor assigned to doing the scan changes the appointment, which the rheumatologist says was extremely important, to a date in mid-August. Oh, yeah… that can wait four months. Important? Nah. Who cares? She’s not my patient.
This stuff pisses me off to no end.
We are fighting to keep the same date we had, and the rheumatologist is doing what she can for us, but it’s really frustrating.
Jeff, wondering if you could help me. I hope somebody out there can help me. A little over a year ago my wife had a grand mal seizure. At first the Neurologist did not put her on any anti-seizure medication because as he said it’s possible she may never have another seizure in her lifetime. Well, 3 months later she had another one. We switched to a different doctor and this time they put her on an anti-seizure drug. 6 months after this she was diagnosed with SLE. She now takes a daily dose of Plaquenil and she also takes Topomax for seizures. She’s been through several different brands of anti-seizure medicines but of course she likes Topomax cause it has caused her to lose weight and she has been seizure free since being put on anti-seizure medication. My problem is ever since she has been on these daily cocktail of drugs my wife has withdrawn emotionally from me. To the point where I confronted her about a month ago about what was wrong and she said she wasn’t happy and didn’t love me anymore. We have a 6 year old daughter and my wife is just not the kind of person who would do this to her one and only child. She moved out of our house into an apt. this past weekend. I can’t help but think the drugs she has been taking has caused her to withdraw like she has. She also has an IUD which causes her to have heavier periods which in turn she’s been told she has an iron deficiency and she has to take supplements for that. I just feel like a husband who does not know who his wife is anymore. Can’t help but think her Lupus and all of her other health problems in the last year have caused her to be this way. Praying!!!
hey Jeff … I can certainly understand your frustration. That really stinks. I hope you are able to keep the original appointment.
As I am unsure of how to contact you directly, I wanted to reach out to you here. There is a gentleman who has posted to the LFA message boards in regards to his wife, who has lupus. This is a link to the thread http://ft003159.fusetalkcommunity.com/messageview.cfm?catid=4&threadid=355&enterthread=y.
I have responded, and suggested that he reach out to you. And I gave him a link to your blog. I wanted to make you aware of this. I figured you might have much better advice in his particular situation than I would.
Thanks. And my best to you.
Wick
I am working on a story about autoimmune diseases. Perhaps I could interview your wife on her Lupus story? As I realize this may seem out of the blue, I assure you I am legit. I pen a parenting column (http://www.glamour.com/lifestyle/blogs/pregnant/2008/04/apparently-when.html#comments) for Glamour in addition, I work as a freelance reporter.
Let me know, would love to email her some prelim’ Q’s today.
Thanks,
Christine Coppa
I’ll ask her if she’d be willing to participate Christine.
Hi Christine,
I would be more than happy to answer any questions you have. I can be contacted through the lupus family site or you can leave an email address for me. I wasn’t sure how to contact you on the Glamor site. I look forward to talking with you.
-Jenny Myers
So sorry to hear jeff, sometimes I think dr’s forget patients have lives too. We may be sick, but we have to live too as hard as it is. I’ve gone for appts too and been told the appt didn;t exist. I was really upset and the officcer worker was very short with me.
To Wick, Ryan, and Christine: I can be reached at jeff@lupusfamily.com. I think I’ve hidden that information on the contact page. I will make some changes so that it’s easier to reach me.
Ryan: Please email me ASAP. I have personal experience with some of what you are dealing with right now.
Christine, what is your email addy?
I just thought I should give a big THANK YOU to my wife’s rheumatologist at UCLA. She went out of her way to deal with the other doctors and offices that had rescheduled my wife’s appointment.
It’s really great to have someone that’s not only a great doctor, but is an advocate for their patients as they move through the medical and insurance bureaucracy.
My wife has Lupus as well, she has had it since she was a child. So far it hasn’t been to bad, but since we got married 2 years ago, she has been having a sever pain in her side on the back above her kidney. So far no tests have shown anything, she is constantly in pain and on high levels of pain medicine. I am wondering if you could offer some advice to me on how you manage a job and caring for a sick spouse, if it is even an issue for you? My wife often asks me to come home early or take days off when she wakes up feeling unwell. My employers have been understanding, but they are starting to question how much time I am taking off.
Dave: That is a really good question and I think it deserves its own post.