help for my daughter
Hi everyone,
I really could use some guidance concerning my daughter. If anyone is able to offer some advice I would greatly appreciate it. She is a member here. She is 19 and has recently been diagnosed with IC. It took a very long time of pain and uncertainty and alot of Dr. visits. She just started elmiron and we are hopeful tht she might see some relief in the future. She also has been diagnosed with severe migraines, PCOS,
eosinophilic esophagitis, hiatal hernia, carpal tunnel in both hands, epstein barr, and at present she is dealing with a bout of colitis due to a large amount of antibiotics given a few weeks ago when she was in the hospital for severe abdominal pain. My problem outside of trying my best to offer support to her (I have a good deal of my own health issues so I can truly understand what she is going through) is her education. She is a senior in high school. So far due to doctor specialist visits (that it sometimes takes a month to get so you take whatever time they give you), a hospital stay, and constantly being sick and in pain she has been absent 31 days. This is not new to her school. Since she was a freshman she has constantly been sick. She even had emergency surgery for a very large hemorrhagic ovarian cyst. So her school is well aware of her poor health. She has always tried to do her best and is not someone who constantly complains about her problems or illnesses. She is a very private person. In fact most of her teachers were unaware that she is in pain almost everyday. She just doesn't want anyone to feel sorry for her. Due to her increasing absences and her constant illnesses there is a good chance she may not graduate this year. She has worked so hard. At her principals suggestion we asked her Dr to recommend home instruction. She has to go for a cystoscopy in March. See another GYN and an allergist which will cause her to miss even more school. Not to mention that there are times that the migraines or vomiting or just plain pain is so bad she has a hard time getting out of bed. If she is absent much more we were told in spite of how many Dr notes she has it would be against state law to pass her. Her principal, teachers, and guidance counselor all agree and understand. But it had to go before the board of education and they turned down the Dr. request. They said that her illnesses just don't warrant home instruction. I got a call today from the Dr. office to let me know. The board did not even call me or call the Dr. to discuss the situation. They did request a blood test to confirm the epstein barr. That is the least of her worries. My husband is going to call them tomorrow to see just why they said no. (I have gotten into a yelling fest too many times with members of the board to make the call. I'll do her more harm then good.) If they continue to deny our request I don't know what I can do. Is there anyone who might know what options we might have? I'm at the end of my rope on how we can help her. She has worked so very hard and truly deserves to graduate. The pain alone from the IC is horrible enough for her never mind all the other things. Now the stress of school on top of the health issues are really starting to take a toll. Can anyone offer any advice? We live in Hudson County, NJ and I'm uncertain what course of action to take. I'm sorry this is such a long post and I do appreciate anyone taking the to read it.
Thanks so much,
Kathleen
Your strength and care is inspiring
Dear Kathleen,
Let me begin by extending a trove of tender hugs to you and your family, my heart nods in total understanding for you. I'm afraid that these boards are somewhat empty, we used to have a different forum that was a lot busier, but since the change it's been slow. Nevertheless, I'm here, and hope that others are too.
I should start by saying that I do not live in the States, nor have I faced a schooling situation like what your very dear daughter is up against. I have have been forced to leave jobs because of my health, but not school (I could tell you right now that it would be beyond my physical means to go back to university or other schooling right now - a lot of us ICers are probably in that same boat).
I can feel your pain (I do not say that metaphorically, I mean that in my veins and soul I really can sense the hardship that you guys are battling), but fear that I can not give you the exact answers that you seek. If I have learned one thing from dealing with my own menagerie of chronic (and at times debilitating) conditions, it is that perseverance is utterly necessary.
It seems preposterous that the school board won't grant your daughter the ability to study at home. I never cease to be amazed by how very ill (I fear to say "on death's door") one must be before many members of the medical community will allow you to do anything that will help to alleviate some of your brutal suffering (in this case allow your daughter to have her schooling carried out at home). If it seems like you are running into brick walls with the school/school board perhaps you could try contacting a member of your city counsel or your congressman (I know that this can be futile sometimes, but it's worth a shot).
From what I gather from your post you are trying to allow your daughter to be granted the right to study from home instead of attending regular (at school) classes, but in (total) theory what is there to prevent you from withdrawing her (or however it would work) from school and then giving her full time home schooling for this last remaining (but truly crucial) year of schooling?
Here are three links to NJ State home schooling related sites:
Home School Legal Defense Association - New Jersey Laws
New Jersey Home Schooling Laws
New Jersey Department of Education
Another thought (sorry if they are all over the place, I'm just typing as fast as ideas pop into my head), if you feel that the school board is being unjust and that your daughter has a right (as I feel she does) to continue her education from home, this might become a matter for a civil rights attorney, or a lawyer who specializes in medically (disability) based cases. I do of course realize that lawyers cost and court cases take time, but if "worst comes to worst" it a plausible idea. (Keep in mind that I am not a doctor or a lawyer, and that these thoughts are just simply my own ideas, to be taken at face value only.)
Here is a link that I found to a website about New Jersey State disability law, perhaps some of the info and links could be of help to you: New Jersey Law Network
(Bear with me on this one...) I know that up here in Canada, in many (if not all) provinces, after a certain age a person can apply for college even if they have not finished high school in some cases (I'd imagine that it truly varies from institution to institution), and this is usually referred to as being a "mature student" (of course the process is not cut and dry, and you'd have to research more into what is involved with it). I'm just putting that out there in case your daughter isn't able (due to the school board or her health to complete high school right now).
In my mind, there is absolutely no denying that your daughter is clearly ill. One would practically have had to have been born yesterday to not see that she deserves that right to study at home. Keep pushing for this right, get as many doctors and specialists (and your insurance company, if they are on your side) behind you and appeal (if possible) the school board's ruling (document each and every doctors visit, hospital trip, prescription, day/days missed from school, etc so that when you're presenting your case or talking to the "people in charge" you can give them spot on records of just how critically serious your daughter's health really is).
One of the first things that I discovered when I began to become chronically ill (I was in my teens) was that you must be your biggest advocate. Stark as it sounds, if you (or in this case you and your daughter and family) does not defend your daughter, who will? I can see that you are fighting, and all that I am saying is that for as long as you can, keep up this battle for what you believe is right.
As I read your heart string tugging story I was reminded of a book called "You Don't Look Sick", by Joy H. Selak and Steven S. Overman, MD, MPH, which chronicles one woman's fight to receive (US) disability (she has IC and numerous other health issues), and the great many up hill battles that she and her husband and doctor fought to ultimately get her conditions recongnized. It's a small book (easily read in a day), but if nothing else, perhaps it might give you a sense that you (& your daughter) are not alone in struggling to change things in your life to help relieve some of the suffering or to just make day-to-day living better.
You may also want to write to the IC Association, they have a great deal of experience with helping IC patients who come to them with a wide variety of situations. Founded by an IC patient, the ICA (a US based, but globally helpful group) is a truly great organization with many, many years of "in the field" work with ICers, doctors and the medical community as a whole.
I wish so badly that I could give you more answers, Kathleen. Please know that you and your daughter can post any time, and that while I may not be able to give you the whole answer that you seek in this case, I am here to offer you unbridled support and care - and the knowledge that you are not alone in your worthwhile fight.
With love and immense hope,
Jessica
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Jessica Cangiano: ICadvice.com creator and administrator
I have IC, but IC doesn't have me!
Thank You
Dear Jessica,
I can't tell you how much your response means to us. Honestly yesterday until I read your post I was ready to throw in the towel and tell everyone "Ok, you win, she'll quit school and get by on her own." Only not quite that politely. We went to her Dr. who was very suportive last week but when put on the spot by the school board suddenly decided that she really couldn't back my daughters reasons for wanting to be home instructed. She wants more tests and more input from all the specialists my daughter has seen before she'll even consider submitting more paperwork. Although I know she has to cover her butt on paper because she is relatively new to my daughters case she does have enough in her file to get the ball rolling. At one point in the conversation with the Dr. I tried to explain that there are times due to the eosinophilic esophagitis my daughter has to run to the bathroom and be sick and she said "so you throw up and go back to class." She said you're not bed ridden and lots of people have PCOS and deal with it. Also as far as the migraines go she said so long as they're not everyday (which they pretty much are, my daughter has just learned to deal with them most of the time) that it shouldn't be that much of a problem. As far a IC goes she said the specialist hasn't sent her any proof yet so she can't agree with that yet. I spent an hour yesterday calling all the specialists my daughter has seen asking them to fax all of her test results and lab reports as well as diagnosis and symptoms for each condition. Her primary Dr. will not do anything unless all the specialists agree that her symptoms are severe enough to warrant home instruction. After all that had to be faxed over I hope her fax machine melts. :-) The school board of course will not even consider home instruction until the the Dr. gives more information. Now with this delay there will be more setbacks and possible time loss with school. Due to insurance and time constraints (with school) she can't change her Dr. right now. I am praying that her Dr. does the right thing and then maybe we can find someone who has just a little more compassion. When we came home yesterday we were both so discouraged and then I read your post. And I feel so silly now but I just started crying. My poor daughter (Faryn by the way) who I'm supposed to be helping tryed to comfort me and asked what was wrong. I told her that we finally found someone who actually understands what you're dealing with and she's all the way up in Canada. So far away and we don't even know you and yet in one post you showed more understanding and compassion than anyone else we have dealt with who is personally involved. Again I thank you for that. I will visit all the sites you suggested. We had looked into home schooling a few years ago but decided against it feeling at that time she would benefit more by attending school. I will look into it again but since she has such a short time to go until she would be finished I'm truly hoping they'll agree to home instruction because that is more quickly and readily accepted in our area as qualified learning then me teaching her at home. I will absolutely check out the IC Association site and try to find a copy of the book you suggested. One of the biggest frustrations to my daughter is the fact that she doesn't outwardly look that ill. She always feels that if it were a more visible illness maybe people would actually take her more seriously. We really hope that we won't have to bring a lawyer into this but the possibility has been discussed. My husband and I have vowed to my daughter not to drop the ball and we won't. Please don't feel that you didn't offer much help. You have helped so much more then you could possibly know.
I hope you are well and happy,
Kathleen
You are deeply welcome
Dear Kathleen and Faryn,
If my message moved you to tears, than please know that your's in turn also caused me to weep, not in so much in sorrow but from the immensely, profoundly heart touching words that you wrote. You see I swear that ever since I replied to you I have kept thinking in my mind over and over again about your situation, and I kept feeling that I had not even begun to offer you a good enough answer to your substantial and very important conundrum. To know that even if I cannot tell you exactly what to do about the school situation, you still value my impute and the huge amount of care which I extend with all my heart and soul to you, well that is just the sort of rare beautiful-ness amongst strangers which can sometimes emerge as we each face our own medical battles. One might say that our paths were meant to cross.
I know exactly what you mean about been (terribly, painfully) ill on the inside but really looking all that sick/unwell on the outside. I too face this situation (with many conditions), and have found that it is a common thread amongst many people with chronic illnesses. The notion that one must be (with all due respect of course to those who are) in a wheelchair, visibly disabled or laying in a hospital bed hooked up to all manner of machines to "be sick" is, in my opinion, a form of prejudice on par with that of age, race, religion or sex discrimination. (A very good website that promotes living life to the best of your ability with invisible conditions - they also have some merchandise relating to hidden diseases - is But You Don't Look Sick.)
The quality of life associated with severe IC has been deemed on par (or higher than) that which people on dialysis experience, the pain of IC has also described in some circles as being as bad as the feeling of having advanced bladder cancer. Epidemiology of IC patients have shown that " 63% of IC patients are unable to work full time" (you can count me amongst that percentile) and "
IC related medical care cost in the US was $116.6 million in 1987 and IC related lost economic production was $311.7 million". These are staggering statics for an illness which many people (and some health care professionals) are quick to brush off, simply because it doesn't leave one looking viably ill usually.
There is bar none (in my mind at least) no denying the severity and realness of interstitial cystitis. An estimated 1,000,000 Americans (let alone the combined number of what is probably in the millions of people from the rest of the world) have IC (some feel that this number may be grossly, inaccurately low as IC is often misdiagnosed [in both men and women] or undiagnosed entirely), and yet it an a largely unknown condition in the general public. (One reason why I think that this is so, is because a lot of people don't talk about their health issues which relate to bodily waste functions.) As such the severity and realness of IC is often belittled, denied or patronized. No wonder many people with IC fall into depression, here they are fighting an agonizing, life altering condition every day and they can hardly find a doctor, let alone a non-IC friend or college, who will take them and their illness serious.
I so believe in championing "hidden illnesses", for if they are to ever be recognized by the general public, and better understood by the medical community, it will not come from how we look (or don't look) on the outside, but from our words (about IC and how it affects us) and the courage that we show by doing the very best that we can to continue to live some semblance of a normal, functioning life in spite of the health problems that we are challenged with. As 2004 drew near its end, I started this site (it's now in it's second reincarnation after we were randomly attacked by internet hackers last fall, so hence why the old forum is longer present, unfortunately) with two very key objectives and hopes in mind: First and foremost I wanted (and of course will always want) to create a place where ICers from around the globe could come and meet and share their experiences, gathering strength and faith in the future from one another, knowing that they were not fighting this terrible condition alone. The second main reason is because I hope that little by little, bit by bit it may be possible to educate the general public about IC, about this hidden disease which at least 1 in 300 hundred Americans have (a number which is almost on par with that of the US population with lupus ), and which has hidden in the (proverbial) closet for entirely way too long. I don't know how well exactly this site is doing when it comes to educating the world, but when I read your post just now, I knew deep down inside that my hope that ICers could meet and help one another in countless ways has certainly come to fruition.
Faryn, if you're reading this, I just wanted to tell you that I think you are doing a truly incredible and highly admirable job of handling this bevy of very serious conditions which life has thrown at you. It takes so much inner strength and perseverance to keep going, to keep fighting with one chronic illness, let alone several! - and I know that both you and, your wonderful Mom, are doing an amazing job, even if it doesn't always feel like that to you when the doctors and school board treat you with such negativity or question the severity of your health. Sometimes I find that it really helps if you tell yourself, no matter the outcome of a situation, "I know that I woke up, coped with my illnesses, stood when I was exhausted, spoke when I was on the verge of tears, got dressed when all I wanted to do was seek solace under the covers and handled more pain in five minutes than many people probably will in a lifetime", and this is an accomplishment that no amount of bad news, harsh words or unkind people can ever take away from you.
I am here for you both in any way that I can be, please know that, sweet friends.
Healing hugs and much love,
Jessica
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Jessica Cangiano: ICadvice.com creator and administrator
I have IC, but IC doesn't have me!
so sorry
To hear anyone has IC is horrible but a girl of 19!!!!! I was treatly poorly in 1992 but I thought by this time institutions and doctors would take IC more seriously. I am outraged. I got a packet together of diagnosis, IC web information, my diagnosis, etc. and when I had to change insurance a number of times and get new doctors and they gave me any crap I showed it to them. I cant believe the school board is acting like that. I have been in remission for 7 years and I pray something works for your daughter.