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Other parents with Young Adult infected kids?

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Posted 4/6/2017 12:11 AM (GMT 0)
Hi - I know that anyone with children of any age (whether they're babies or grown) knows the helplessness of having a sick child. I am wondering how many of you have young adult children who have LD? I am trying so hard with my 20 year old to be helpful but not overbearing. Thank goodness I've been pushy - because it's taken a year and 8 separate physicians to finally get closer to a diagnosis (still waiting on Igenex report). But the helplessness and grief just gets to me sometimes. My spouse/daughter's dad deals with his stress VERY differently, and we can sometimes make each other feel worse/more fearful rather than better.

If any young adult wants to weigh in him or herself on what is helpful for your parent to do or not do... please speak up!

UCSDMama
Posted 4/6/2017 1:44 AM (GMT 0)
Bumping
Posted 4/6/2017 2:05 AM (GMT 0)
Hey there!

I'm 26 and have had lyme for 3 years. My parents are really wonderful and supportive. My boyfriend also has lyme and we eat an incredibly strict Paleo/Autoimmune paleo diet. They make us all sorts of special breads, cupcakes and pies made of soaked cashews and raw honey (for example). They put so much care and love into learning our diets and making us feel included and normal at Thanksgiving and Christmas and birthdays.

I do get frustrated with my mom sometimes when she makes suggestions or sends over a new article or something which is TOTALLY unfair because its so sweet and kind but I've been through so much research and I don't always agree with her suggestions - primarily her push for us to see a regular western med doctor. They just DO NOT get it and the amount of time we've wasted going from one referral to another to a blood test facility and then a follow up appointment etc. etc. Through trial and error we've found a list of herbs that help us but diet is EVERYTHING.

My boyfriend and I have also just signed up for counseling (separately) As you already know, this disease is incredibly stressful and there's so much psychological challenge that goes along with it. Feeling trapped in your own body and coming to terms with the idea that this is the only life you get to live and this is what it looks like now. And it sounds like you and your husband are having your own struggles dealing with it which I never really considered. I think counseling, whether individual or family style is a HUGE part of healing for everyone. Your daughter needs love and solidarity and you have to take care of your self first so you can give her the best version of you possible. Also, homeopathy and chinese medicine are of the belief that grief and negative feelings cause inflammation in the body, which we know is the whole dang problem!

Good luck!!
<3 <3 <3
Liz
Posted 4/6/2017 2:37 AM (GMT 0)
Hi Liz,
Thank you so very much for taking the time to respond. I am so sorry for everything you have been through, but I admit I am also very pleased that you have a boyfriend with whom you can share re coping strategies, diet changes, treatment options, etc. I am a mental health professional myself, and I'm very glad that you have each sought out counseling.

My daughter has a therapist on campus (thankfully!), and I have had my own therapy. But you make a good point, that perhaps it's time for my husband and I to go back to couples counseling to help US deal with having an ill child in a more collaborative way. We've been in the past for other issues, but it's been many years since we've gone.

I can imagine that it gets tiring to have your mom (or anyone else) send you articles and make suggestions when you've done so much of your own research. My own mom kept asking me over and over "have they tested her (my daughter) for Lyme?" Yes, Mom, we've been through this... sigh.....

I will try to be respectful of my daughter and ask her what would be the most helpful support from me. I do as much as I can for her in terms of cleaning her dorm room when I visit, taking her to appointments, and showing her tons of TLC. I hope that she is able to meet a romantic partner at some point so that she can also have that type of support. Her friends do not understand her "invisible illness" and have been burnt out on hearing about how she cannot do this or that due to lack of energy. I am worried that she might have difficulty meeting a guy if she continues to be so limited physically. I try not to jump too far ahead in my thoughts - but that's where they sometimes go. Do you mind if I ask whether you met your BF before or after your diagnosis?

I am looking forward to having my daughter home during summer break so that she and I can do yoga together, I can take her to acupuncture, and we can together work on dietary changes. She's in a lonely place with this disease.

Thanks again for your response, and thank you to julymorning for bumping smile
Posted 4/6/2017 2:59 AM (GMT 0)
Well, this is the time when they should be breaking away, defining their identities as adults, but they're sick and trapped at home ... with their parents! Not easy for them and not easy for us to be caregivers, and to be those parents!

I think it's really important to keep the goal in mind, their recovery. That's what I try to do when things get complicated. It has really helped me get through a lot of this.

"Thank goodness I've been pushy". I have too, especially with staying on top of medications and diet. It's like that's the only strict rule really. Lesser things I've let slide. Actually, I've let all kinds of things slide. Our perspective on things has really changed since Lyme.
Posted 4/6/2017 5:01 AM (GMT 0)
Thank you B99 - super helpful reminders. Hugs to you. I'm exhausted from all my research over the last few days. Gotta remember my own self-care!
Posted 4/6/2017 6:14 AM (GMT 0)
I know that there are a lot of facebook lyme groups. You could look for one that is parents of young adults.

Here is a great post that also has a listing for a twitter account you can follow. It was posted by Happyjo who is no longer a frequent user but pops on now and then.

www.healingwell.com/community/default.aspx?f=30&m=3429762

A member here started a website for parents of kids or teens. I know your daughter is a bit older but it could still be helpful www.parentsoflymekids.com/

It's a start.

Janet
Posted 4/7/2017 12:05 AM (GMT 0)
Thanks for the links, Janet! Very helpful articles smile
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