Managing Chronic Illness in the Family

Hi M.,

I totally understand! I am 31 years old, a mother of three (ages 1, 3, and 5) and I have Multiple Sclerosis (MS). I just recently started doing injection medicine once a week. At first the side-effects were aweful, but now I think I am able to manage them. I do it for my kids! I want to be there for them whenever they need me. I hope that this medicine helps prevent other episodes of MS and keeps me being a GREAT mom!

I am 34 with Noonans Syndrome. It is pretty well managed. But I get really tired. So I make sure I have time to rest(like when the boys are at school) My 10 yr old has NS also but so far he has not had any of the medical effects just the learning problems in school. But he has great teachers and we are all on the same page. We also have a 4 yr old (adopted at birth) and he has been the sick one. We don't have the health on the birth parents so it gets interesting. When he gets a cold or plays to hard in the heat he has breething problems. I keep all his meds in a insulated diaper bag so if we are going out for the day I can just grab and go. I also put all the ALL appointments on my Blackberry with a reminder alert as well as any other important things I need to remember. I think the key is to be as organized as you can. And remember to stop and take a deep breath. And make sure you do something nice for yourself. We don't have a lot of money so when I go off base I treat myself to Starbucks.

One of our children has food allergies so numerous and severe that he has to be on a very strict, almost entirely home-made diet in order to remain sympton free. We went through several nightmarish years before he was diagnosed. Now things are better, but it is still very difficult and stressful to manage his special diet.

What I found most helpful, much more so than any of the doctors, was a support group for parents of kids with food allergies. They were helpful with understading the testing and diagnosis, discussing meds and special formulas, trading recipes and were of course a great source of emotional support. I would highly recommend finding a support group for whatever the specific illness is that is affecting your family.

Hi M.. I'm the homeschooling mom (37 y.o.) to six kids (all adopted) with special needs - three are considered medically fragile. My DH of 13 years was recently bit by a spider that has left him with residual affects that are making life complicated. On top of that he has chronic edema which makes his legs and feet very painful. We have no medical insurance for he and I right now so that makes it even worse. I manage all of the medical issues, homeschooling and the house. I'm Queen Deligator. We are in the Roseville area and I do have a homeschooling group that gets together once in awhile - trying to get it back to weekly but life has been too hectic. You can e-mail me privately and I can give you more specifics if you would like or if you just need someone to chat with.

Hi M.. I am also 38 years old and have dealt with Fibromyalgia for 15 years now. My husband battles with severe depression and my 11 year old was born with a congenital heart defect. First and foremost, and this is something easier said than done. You must treat yourself as number one priority. You are no good to anyone unless you you take care of yourself. For 10 years, I took care of everybody and just in the past year, I have had to learn to take care of myself first to make me a better person for my husband and children. Secondly, finding different types of support groups help tremendously. Depending on what support group you join, they can be able to give you advice or support on how to deal with different issues going on in your life. Being the caregiver in the family, sometimes we forget about ourselves and get very overwhelmed. That is why I have had to teach myself to let others help me and learn to give time to myself. Having chronic illness in the family is not an easy thing but knowing that you are not alone makes all the difference. I don't know if any of what I said helps you at all. But I do hope what I said makes sense.

M... i am right there with you girl ! My husband has chronic kidney stones and the past 4 years have been hell on earth with his condition. It IS like a part time job, especially when he is in bed on pain meds for up to 2 weeks at a time. Those are the worst times. He is no help to me at all with anything and basically sleeps all the time. The doctors are no help to us at all and just push pain meds on him. Very frustrating ! One day at a time, girl....

Sometimes I manage the chronic illnesses, sometimes they manage me :-) I have had three different autoimmune diagnosis in the past seven years, and my middle daughter has something called "BOR syndrome" which includes hearing impairment and heart/kidney/ortho problems. In the next three weeks, I think we have eight doctors appointments between the two of us.

Binders are what keeps me sane. I went into the new Kaiser pediatrician this week with the names, addresses, and most important test results for all seven of the specialists my daughter used to see. The new pediatrician was floored, and immediately ordered all the corresponding referrals. It's also useful for IEP stuff at school.

I do frequently feel drained, and I admit that more than occasionally my condition worsens because I prioritize my daughter's needs over mine. I know I shouldn't do that (it's like putting your oxygen mask on in the plane before your kids -- you KNOW it's supposed to happen that way, but can you really suppress your mom instinct to help your children first?)

It's a great big juggling act, and hopefully all the balls stay in the air. I am very fortunate that my parents still live in the area and are more than occasionally willing to help with logistics.

So, no magic, but just a few ideas . . .

Hi M.,

My husband of six years has type 1 diabetes and it is a huge part of our life and sometimes an extreme stress. We have weathered low blood sugar seizures, viral meningitis and hospitalization (diabetics are more prone to this), depression, chronic back pain from injury during the seizures, mood swings, high blood sugar lethargy, constant need for extra sleep and naps...I could go on and on, but you get the picture. We are blessed with two kids--2.5 and 5.5, and I am a full time grad student and he will be getting his teaching credential next year.

I get incredibly drained. I have found a few things useful in maintaining...I take a weekly yoga class, which has been truly helpful, we have received couples counseling, especially after a bout of severe illness or injury, and I have had to substantially lower my expectations of what our life is like. Often the house is not perfect, and our kids watch more DVD's than I would like, but we are coping and we are succeeding! We have almost accomplished our career goals, and we have a strong marriage. The other thing I have been practicing lately is mindfulness, which is basically just breathing and focusing on the here and now, the present moment. Also, my hubby and I will take turns napping if life is especially stressful, just to catch up on much needed rest, which rejuvenates us.

THank you for bringing up this important topic. I wish you and your family the best!

-c

Yup...I have interstial cystitis, my husband is a type one diabetic and my 2 mo old will now need 3 mo in a spica cast....I get it! Here is my email, ____@____.com if you prefer that as well. How can i help?

I have used some trial and error to get my familly to stay healthly and I think I have the method almost right. Everyone is different so I can't say one marrical thing for everyone but switching my boyed from dairy to organic soy milk really helped the runny noise epidemic. email me if you have an MO you are working on right now: ____@____.com. I have been studing natural health care and whould love a chance to learn more through your exerience and teach others what i have learned.

Hi. I was just diagnosed with an autoimmune disease and i have a 2 year old girl and a 4 year old girl. As hard as this has been, i really feel for you b/c i know it would be harder if it was your child who was ill. I have two good friends who are therapists and although i've never been, i believe in that and have many friends who have seen therapists and it really helps. I think you should seek someone who you can talk to who is not a family member and not a friend and who has experience in dealing with health issues. I really think it woudl help alot, to just take that hour to yourself to be able to talk about what you're going through without having to filter anything. I'm considering the same but my issue is so new that i need more time to digest it all first.

Hi M., my name is A. and even though my son and I do not suffer from a chronic illness, I know a lot of people who do. In my line of work I meet a lot of people who are suffering. I am a product consultant for Tahitian Noni International, I encourage you to do what I encourage everyone to do, Reasurch Noni and the effects the fruit has on people and animals. There is no limit to the information you will find on this amazing product Tahitian Noni Juice (TNJ) please check out these sites because documentation beats conversation all day long. For information on the fruit and its benifits go to nonireasurch.com and to order the juice you can go to my personal website given to me by the company tni.com/2097098. I would love to hear your thoughts on the things you find. I personally know people who's symptoms of asthma, fibromyasia, smoking, diabetes, insomnia, and tons of other stuff, have been relieved from drinking the Tahitian Noni Juice. Be Blessed and peaceful this year M. I hope all is well for you and your family. Please feel free to contact me with any questions or concerns.