View Full Version : Could use some advice
01-24-2008, 09:19 PM
Hi. I'm new to this forum. I'm the father of an 18-year-old girl who may have lupus. This all started about 3 or 4 months ago with hair loss. Since then, her doctors have done some blood tests, but they are just taking a "wait-and-see" approach. They've prescribed no medication.
Some symptoms and signs are there: considerable hair loss from her entire scalp; VERY red cheeks; irregular periods; and an ANA of 1:40. Fortunately, my daughter is physically active and in great spirits, with no bodily aches and pains. (To tell you the truth, I'm in worse shape than she is from lack of sleep over this. I feel so helpless.)
The timing is really lousy. My daughter has just been accepted to college for the coming fall, to a school that's very far away. As a parent, I'm naturally worried about her going away if she's ill, especially to a school that is so far from home, in a place where she knows no one.
In addition, we don't have health insurance now. I understand that her university will make her pay for health coverage, which is great. But then I wonder if this sort of thing is considered "pre-existing" and won't be covered if she ever needs medical treatment?
I'm so confused that I don't have any well-formed questions at the moment. But if anyone has any advice to a father who is very worried about his daughter and about what she might face in college, I would appreciate your reply.
sick n tired
01-24-2008, 11:14 PM
If her doctor is taking a "wait and see" approach then there is no diagnosis. If that is the case, then this is not pre-existing. At least that is my take.
I assume, that her cbc's have all come back normal, also. This test measures her organs to see if they are stressed. That is great news. I have a son and a daughter that are in that same mode of wait and see. I do understand that the not knowing is worse than the knowing. My kids are not worried, but I have had many sleepless nights asking God to give me anything that attacks the organs and allow them to live a life. Kids are so interesting in their approach to life. They are invincible, at least in their own minds. We know everything that could happen and they are sure it won't.
I do understand the fear that if they are away then we can not be there as fast. Has she applied to any other universities closer to her? How far away will she be? You might want to see if she could go to a university closer, but if she either can't or won't then you are going to have to do the hardest thing that you have ever done, dad, and watch her to go. My mother had to do that for me and I understand the sacrifice she made to allow me.
My heart goes out to you. I so understand the helpless feeling when it comes to my kids and illness or even the future. Just allowing them to learn to drive takes courage on a parent's part. The good thing is that there are over 7 months for her to get better or at least the doc to know how to treat her.
I will keep both of you in my prayers,
01-25-2008, 10:38 AM
I agree with Sick n tired, there apparently is no diagnosis at this time, so it would be hard for your insurance company to claim a pre-existing illness. I've heard of students in college being able to take medical insurance, that might be a very good idea or you may want to insure her now, before she is diagnosed, with a company that is national so that she can get medical care while she is away at school.
My daughter attended college out of state with Lupus and our insurance was not covered in that state. It was very difficult for us, we had to fly her home 4 times/year so that she could be seen by her team of doctors here. When she had a flare at school, she had to go to the emergency room for treatment and that was not working well at all.
I understand how important it is for most children to want to go away to college and we, as parents, don't want to discourage that. So, it is probably important that you take steps to get her medical coverage now, before she is diagnosed, so that she will be covered when she is away at school.
We are here for you if you need more information, advice or just want to talk and share. I wish you the very best and your daughter is very lucky to have you as her daddy!
Peace and Blessings
01-26-2008, 05:52 PM
Hi Karen and Saysusie,
Thank you both for your kind and supportive notes. I can't tell you how much your words have helped. Also, I'm looking into health insurance for college now, as Saysusie suggested.
Actually, my daughter has been accepted at a number of schools, none of which she's seen before, and all of which are very far from home. (One is even outside the country, which further complicates health insurance matters). This is her big dream, and she has even planned a 3-week trip to visit campuses this spring, which in itself will be tiring for her. Naturally, one part of me wants her to go so she can decide on a school. But one part wonders if the stress will be what it takes to trigger something worse. I know well about sleepless nights wondering "Why?" and asking God to spare my precious girl and give me whatever. As you say, Karen, accepting that my daughter will go away is going to be the hardest thing I've ever done. There are times, like right now, when I wonder how in the world I will cope come September.
I recently stumbled across a radio interview on NPR's "Speaking of Faith" with Dr. Rachel Naomi Remen, an oncologist and herself a 53-year survivor of an autoimmune disorder and 8 major surgeries. As I think about my daughter's health and future, I've been reflecting on something Dr. Remen said: "Sometimes what appears to be a catastrophe, over time becomes a strong foundation from which to live a good life. It's possible to live a good life even though it isn't an easy life. And I think that's one of the best kept secrets in America."
Thank you, and blessings to you both.
01-27-2008, 08:06 AM
I work at a college, though not as a faculty member. I encourage you and your daughter to talk with the ADA Counselor on campus as you sort through the issues that may come up. If she does receive a diagnosis prior to attending, that counselor may be able to help her adjust her schedule and her lifestyle as she moves into the world of College Freshman. If she does not receive a diagnosis, that counselor may still be able to offer her some support and encouragement.
Your daughter is to be commended - she is a brave young woman to be seeking such independence at such an uncertain point in her life. It sounds like you are raising a very strong young woman. Please stay with our forum, and if you'd like, encourage your daughter to join in as well. There's a wealth of knowledge, friendship and support here!
And... "Speaking of Faith" is one of my favorite NPR shows - I've learned so much from it, I'm glad you've found it!
01-27-2008, 11:25 PM
It's really heartwarming to hear how concerned you are about your daughter. I'm seventeen years old, undiagnosed at the moment, but we're leaning towards rheumatoid arthritis and SLE. It's hard going away to college in any aspect, but thinking about how one will take it while dealing with lupus is even harder. Being in her position personally, its really conflicting; what teenager doesnt want to move out and live on their own? But when you get sick all the time, you want those comforts of home, you want your parents there to take care of you... Its a hard time, and a time you never thought you'd have to go through, but she does sound like a very strong young woman, and she has your love and support, and that goes further than anyone could ever imagine. She is lucky to have you as a father.
01-28-2008, 09:12 AM
I love the quoate from Naomi Remen. It succinctly says what many of us here try to express...."It is possible to live a good life even though it isn't an easy life..." That is so true for me and many others here. I would have to say that I live a good life, but it is very difficult, sometimes, to maintain a semblance of health, to deal with pain every day, etc. But, it is a good life!!
I am happy that Dr. Remen's words were able to give you hope and that you do realize that your daughter can have a wonderful future with immeasurable possibilities. With both of you working hard towards keeping her as healthy as possible, it is a goal that can be realized. We are here to help you both in any way that we can whenever you need us!
Peace and Blessings
sick n tired
01-28-2008, 10:34 PM
Hi Concerned Father,
It was very uplifting to hear those words of Naomi Remen. I love to listen to that show although I missed that one.
My grandfather taught me something about life that I use on a regular basis. He said, "Whenever you have something hard or distastful to do, just bow your head and walk on, never hesitating or putting off until tomorrow" That is where I see you. You are having to walk on eventhough it is not something that is even conceivable.
As I said before, you and your daughter are in my prayers.
Which schools is she looking at? I have one child in Virginia and another in Texas. A third one is looking right now for next year.
02-01-2008, 06:41 PM
Alanah, hatlady, Karen & Saysusie,
Thanks for the reassuring words and advice. I appreciate it greatly.
I spent much of this past week in bed with a bad cold, which gave me plenty of time to think about things. In particular, I've been thinking about my daughter's symptoms, so I'm going to post those questions under the "Lupus Erythematosus Symptoms" forum.
02-01-2008, 08:50 PM
Just to chime in slightly off topic but make sure to check into their disability student services programs not all are created equal some may not be willing to help but they can do amazing things like delay work (those days there is nothing left after class) ergonomic chairs, and environments for testing that are quiet :). I was so grateful for the help at my first school, but not all are that great. Having done college with SLE please dont hesitate to ask those questions that can only be answered by having been there
02-02-2008, 02:18 AM
I just want to say that I think it is great that you are concerned about your daughter!! Your love and support will go along way! :) I can't even get my mother to admit that I have Lupus, well, I was just diagnosed not too long ago so I think it's hard for her to come to terms with but it feels like she doesn't believe me and I don't need that stress right now. I hope things work out for your family, just be as supportive as possible, she will greatly appreciate it!