My daughter ,28, has been ill for 10 years. The last 3 she has been so I’ll she couldn’t take her certification test to get a job in her trained field. Recently, she had to move back in with us, her parents. She can’t afford to live on her own. She’s weak and tired but looks okay. Anemic, west Nile, mono and parasites One sick puppy. I am just now realizing this is chronic and she is not likely to move ahead with a normal life. I need to find a support group for her and us the parents.
Is there any possibility that she has an underlying condition, such as celiac disease? Or even lupus or Lyme?
I know that celiac seems to be the disease-of-the-month due to the fashionable nature of gluten sensitivity, whether real or imagined, but for those who actually have it, it can cause the kind of general malaise you describe. Similarly, Lyme and Lupus can manifest theselves in a variety of ways.
Have her immunoglobulin levels (igG) been checked? She should be evaluated to rule out primary immune deficiencies. For whatever reason, many doctors miss this until people are very, very, very sick.
My parents are going through this right now. I’m 25 and was diagnosed with lupus (and multiple other overlapping immune disorders) in February after years of chronic illnesses (mono, pneumonia, bronchitis, and so on).
I would not be able to live on my own but I live with my spouse and a roommate. My parents live ~4 hours away but are here very often to help me with basic things and hospital stuff. They are able to do this though because neither of them work.
If she is sick that often with so many different things, I’d push for an ANA test if she hasn’t had one. Autoimmune diseases are really hard to diagnose and many doctors won’t even test for them. I had to push my PCP for an ANA test and thus began my descent down the rabbit hole.
This is not going to be the route that most parents will want to take but my parents have found a ton of support in medical marijuana circles. In fact, they’ve joined the first “church” of their lives- a marijuana church (it’s a long story- it’s basically a support group for patients, caregivers, and advocates). They found much more support there than they did in a local lupus group.
Please do have hope though. It is entirely possible that there is an underlying cause that can be treated (likely not cured) but treated. I am still very much struggling but I now, after many months of intense treatments, have resumed school (though on a modified plan).
((hugs))
My kid both had chronic illness from ages 10 and 12. They are now 26 and 28. The older one has been self-supporting and mostly able to lead a fairly healthy life since HS, tho he had a very rough 6 years and still isn’t 109% and probably will never be. The younger one lives in an apartment or room in a house that we pay for (plus all her other expenses) and has never been healthy enough to hold a full time job or even know whether she will be vertical for 4+ hours in a day.
It is challenging and we’ve had issues getting medical care. Recently, we were able to get her declared permanently disabled so she can stay on the family insurance plan, which she would have otherwise aged out of at 26. This was a MAJOR relief. We live a day at a time and celebrate the little triumphs–being healthy enough to enjoy short visits with loved ones, being able to graduate from college, etc.
You can pm me if you’d like. We have traveled to CO, NY and CA for her and son’s medical care as we weren’t getting what they needed in HI.
Sending hugs.
I’m trying VERY hard to extinguish the guilt feeling I have over my son.
He’s about two years into a diagnosis of inflammatory bowel disease. Hes 30, self supporting and seems to be managing well.
But it IS a chronic incurable disease. I “gave” it to him, thus the guilt.
And my ulcerative colitis has been mild all my life.
His condition has already mutated into UC and Crohns and has required him to move onto humira and other more problematic treatments…
Wish you well.
My oldest son has schizophrenia and is on SS disability. It’s an option worth considering for any person not capable of earning a living by working. There are also programs that subsidize apartment rent that make life easier.
Sending support and caring to you all.
My mom “gave” me lupus, too. She has Graves Disease which is a very mild autoimmune disease and then the genes went haywire in my body.
I know she blames herself and it kills me that she does. She didn’t know she had these genes when she had me since Graves didn’t develop until I was in my early teens. And even if she did know she had it, I still wouldn’t be mad at her. The odds of me developing an autoimmune disease were low even with the predisposition and the odds of getting a systemic autoimmune disease were even lower since no one in my family had ever had anything like this.
Mental illness runs in my husband’s family. I didn’t know that when I married him. We never thought about it! My daughter has already mentioned the possibility of adopting to avoid the M.I. danger, but I told her she could run into the same issues or others with an adopted child.
(((HUGS))) to all
Sending you all big spy hugs!
Hugs to you. D has chronic health issues and it’s difficult for all of us, and has been especially so as she’s aged out of the children’s hospital. Medical care in this country is in crisis mode, and at least here, it’s very disjointed and way less than seamless if one needs medical specialists.
I double second romani’s suggest to be certain there aren’t auto-immune diseases at play. H had sarcoidosis, and we’re sure now he had had it for years before it was diagnosed, but he didn’t recognize the symptoms and none of the doctors diagnosed it.
I hope you can find support groups for you and your D. There are some online forums that are very helpful and supportive.
@romanigypsyeyes -
Thanks for your post, I appreciate it.
I read about your health struglles and hope you will find improvement, if there can’t be cure.
Two of my children have Crohn’s. One was diagnosed at 11 the other at seventeen. One attends a support group for Crohns and has had a friend with UC. My other child has mentored chronically ill children and advocated for the people with disabilities. Finding friends to share their illness with has been critical. They are both employed, live independently and thriving. They are also still ill. Your child can have a full life. I promise.
First of all, giant virtual hug. Take a deep breath. I think it is critical to get a good diagnosis. Take this one step at a at a time. If you think this has been going on for quite some time, sit down and write up a history of everything you remember. You will remember things she doesn’t. My children constantly gave terrible info to their doctors. If you can, go with her to her visits. Get recommendations for the best doctors you can find. Hospitals often have info on support groups. Sharing info can be very helpful.
After a diagnosis, your child and her doc will come up with a plan. Be positive. Help in every way you can. But take care of YOU, as well.
DO NOT GO TO THE DARK PLACE. Worry, anxiety, fear, isolation. These all take a toll.
I am here for you. Private message me and I will be happy to lend support. That goes for anyone posting here. I am looking at you @Musicmom.
Oh and I have Crohn’s, too.
My kids didn’t want a support group. We each tried individual counseling several times but gave it up as none of us felt it was particularly helpful and the kids felt it was too time consuming of their limited energy. Others have found counseling invaluable–we are all different. Online friends have been very helpful to my kids.
Thank you. I hope the same to you and your son. Treatments for IBDs have come a long, long way even in the last 10 years. One family friend who I’ve known since birth has finally mostly gotten control of her Crohn’s thanks to Humira. The change has been drastic from uncontrollable to leading almost a completely “normal” life.
There has been an upside to having a parent with Graves. Even though she doesn’t completely understand lupus (no one really does), she does understand what it’s like to live with an “invisible,” incurable illness. Through online groups, I’ve “met” many people whose families do not understand what it’s like to live with these diseases. Their parents just think they’re lazy and whiney. Of course, no one wants anyone else to have an illness like this, but it’s comforting in a way to have a loved one who at least somewhat understands.
I will echo HImom. I didn’t find counseling at all helpful and local support groups were just depressing. I did find support through tumblr of all things.
My son has Crohn’s disease. After two bowel resections when he was 14 he was started on Remicade and has been in complete medical/surgical remission for 8 years.
@reddoor- beautiful post.
And thanks for the invite to chat, I may take you up on it.
I’m a professional worrier…our daughter has cognitive challenges that will impact her entire life.
Lots of things in her life that need to be nudged along on a daily basis.
So, it’s difficult to turn it off now that our son has hit a rather sizable bump in the road, ya know??
While I certainly hope for the best for OP’s child, I’m confused about how any of these constitute chronic ailments that last 10 years and worsen, and I hope that the young woman has been getting an appropriate diagnosis and receiving treatment from a major medical center like the Mayo Clinic. Perhaps OP can come back to the thread to clarify.