First let me start out and say my daughter was diagnosed with Lyme and co back in October 2009. We thought we caught it early. We go to an llmd in north jersey and have been happy this far.
My daughter is a freshman in college. In September she had been practically symptom free for two months and we weaned her off her meds. She went to college in Virginia (6 hours from home). She seemed to be a little homesick but was adjusting.
It wasn't until mid December that she told me she was experiencing symptoms again and she wasn't telling me because she didn't want me to worry and she didn't want to go back on meds. She wanted to be a normal freshman in college.
She came home for Xmas break and we went bck to her llmd. The dr said she was a mess. Lymph nodes swollen, knees swollen, sed rate was up, exhausted, headaches, joint pain. So back on the meds. The dr suggested her taking a leave of absence from the next semester to get her well.
We decided taking a leave of absence was a good idea. Now is when I start to get ****ed. My daughter can't drink alcohol because she is pulsing tindamax so she decided to try and smoke pot and realized that this makes her feel so much better. Needless to say this seems like all she is doing.
I feel like I went to having a level headed girl to a total pothead. Obviously I don't want her to be in pain but I don't want her high all the time either.
Anyone have any thoughts or suggestions. Why do 19 year olds think they know everything?
Posted by BoxerMom (Member # 25251) on :
Please tell your LLMD. Pot lowers the immune system. It is not conducive to healing from Lyme.
Often, teens will listen to authority figures who are not their parents. Don't take it personally. It's just a fact of life.
She may be ****ed at you for telling the LLMD. Not to encourage lying, but you may want to tell her you placed the call because you didn't know what the effects of pot could be on Lyme disease, and you wanted to know.
Can she take an online class and transfer the credit back to her college? She needs something to do!
Posted by tls122269 (Member # 23200) on :
She is taking a community course while she is home, but she is having some neuro symptoms. Tremors in her hand and losing grip, very forgetful, and can't hold a train of thought. Is this the Lyme or the pot I wonder.
The dr knows she is doing it and told her it wasn't a good idea but didn't say you need to stop.
How do you get a 19 year old to do what is best for them....I feel that is the million dollar question.
Posted by BoxerMom (Member # 25251) on :
Do you think it is rebellion or self-medication? Boredom? Is she looking for positive attention?
Does she have friends to hang out with? That is so important as a young person.
I think teens and 20-somethings are the most difficult group, as far as compliance goes. They have every reason to think life will be great, whether they treat their Lyme or not.
And I think some of them use their Lyme and Lyme treatment to control and manipulate, even if that just means freaking out their parents!
I have no great answers. Her symptoms sound more like Lyme than pot. Has she talked about how it feels to have to leave school to get more Lyme treatment? That would have made me so depressed.
Posted by AlanaSuzanne (Member # 25882) on :
Tis
I have a daughter who is your daughter's age.
My daughter was sick and homebound for 3+ years. She is at a point in her life where she is p'oed about what this DD has taken from her. And I can't fault her for that.
She is in her freshman year of college which is a miracle considering she was bedbound for such a long time. She is angry that this DD has ruled her life and again I can't fault her for that.
She now wants to spread her wings and go beyond our geographical area. A part of me wants her to go for it, but the mom in me knows that at this point she needs to be close by for dr. appts and weekend visits.
Boxermom, I have to disagree with you. I think that the vast majority of young people dealing with these DDs are trying to find their way to wellness. I think anyone would be hard-pressed to find young people using LD and tx to control and/or manipulate. You just can't make this stuff up.
And Tls, you are right, the million dollar question is:
"How do you get a 19 year old to do what is best for them"
I don't have the answer. All I know is that I feel for you.
Posted by momlyme (Member # 27775) on :
I have a 19 year old and a 21 year old, neither of them have LD.
They do have their own set of problems. One has experimented with drugs and now I believe is taking downers. I cannot control what she does and I will not contribute to her abuse.
She comes to me for money, I refuse. She asked me to move back in, I told her only if she quits the drugs. She moved in with her boyfriend.
I am a tough love parent. I believe that they will make it on their own. I gave them guidance when they would take it... now it is time for them to learn by experience.
The hardest part is letting go. Trusting that they will make it through these troubled years. They are always in my prayers.
When I think back to my teenage years and my twenties... I thought I knew everything. I wouldn't listen to anybody regarding my own substance abuse. I quit when I was ready. Not before. There is no other way.
Posted by METALLlC BLUE (Member # 6628) on :
No one is going to like what I have to say here, but it's important everyone understand it. It is not wise of her to be using that substance from an unknown provider (If it were medically produced or from a trusted dealer, that's different).
Now, if she hasn't explored other medically viable and legal treatments for her symptoms and pain, then that is what she should be doing under the care of her LLMD.
If she has explored all her options, and nothing has worked, and she could get access to Marijuana, then it's no different from other medically relevant treatments.
In-fact I use it for two things. It reduces anxiety and stress, improves appetite, and surprisingly decreases pain, especially of the muscles and nerves.
So, under appropriate guidance (Or with self education), it's appropriate in some context.
This is not one of them. To get a hold on it, your best bet is to apply techniques that don't involve being an authoritarian, nagging, yelling or otherwise trying to control her. Instead, try sympathizing, and explaining experimental drugs or things you've tried. Try expressing humility and understanding, and avoid arguing at all cost. Arguing will only lead to resentment and you not getting what you want. To coax her further into listening, apologize for previous approaches that you know offended her and that you were wrong. Then express how proud of her you are for fighting the disease and going to the doctor. Focus on the things she's done right. At this point, after being complimented, observing you humble yourself, having you sympathize, and avoiding an argument, while also hearing your past experiences, she may turn about face and actually start sharing openly and honestly.
Compassion goes a long way too. These techniques work with about 95% of the human population, including on children and spouses.
If you don't offend, then no one will likely try to defend. If you sympathize and share, they are more likely to share if they feel you're sincere (which you should be).
You may find the real root of why she's doing it, and you may be able to provide sufficient guidance if you get her into a "receptive" state rather than on the defense.
I don't have kids, but I do know them, and they're just like adjusts. They want appreciation, love, respect and to be able to feel as though they're making their own decisions because they want to. Your job is to guide them towards doing what you want them to do without them feeling you're superior or "smarter" or better able to choose what is best for them. No one likes to feel stupid after all or lose face.
Posted by METALLlC BLUE (Member # 6628) on :
One more thing: Think about how to get her what "she" wants, not just what you want her to do or be. If you can find methods, such as seeing if online courses or a lower course-load would be appreciated by her LLMD and by her, that's one of countless options that may be approved by her and lead to better resolution of that particular frustration.
There are many more ways to "win/win" you just have to think it over carefully from her point of view.
Posted by tls122269 (Member # 23200) on :
Thanks everyone for your responses and support.
Boxermom - She has a few friends that go to community college that she hangs out with and her other friends that aren't that far away she does see now and then. I don't think friends is the issue. I know boredom might be a reason, but she has so much she likes to do like draw/sketch and she hasn't even picked up her drawing pad. She is definitely not the kid that seeks attention. In fact she seems to be getting the most attention out of all my kids due to the illness.
AlanaSuzanne - When she told us she wanted to go to college 6 hours away of course my first instict was to hold her back, but we didn't. We encouraged her to go. We decided together as a family that for this coming September she is going to transfer to an in state school...one of her closest friends goes there, its an hour from home so she will be close to us and the dr. Good luck with your daughter.
momlyme - I wish I could be tough like you. There are a few problems that I have. I am divorced from her dad...although we have a very amicable relationship we don't see eye to eye on everything. He has alot of money and gives the kids whatever they want including an endless supply of money (kids are very spoiled). We have had joint shared custoday (12 years now) so they live in both of our houses. I know she is 19, but we have been doing this for so long she still goes back and forth between the houses on the same schedule as always. Now the problem is if she gets mad at something I say or do she goes to his house and the reverse for him. He is no disciplinarian at all. I have always been the one for discipline. I wish I could be more like you, but I am so afraid I am going to lose her to her dad. This is something I really need to work on. I have reached out to him about how concerned I am, but am still waiting for his reply.
METALLlC BLUE - I do agree with the things you've said and I have tried them. My daughter and I have a very open relationship and talk about everything (sometimes I feel it is too open). When she first told us that it helped her we gave her money to buy it. The problem now is that she is abusing it. We have talked to her about it and she just keeps saying she is 19 and she can do what she wants. In reality she can. We have since stopped giving her money for it, but as I said my exhusband still gives her money for gas or eating out so I'm assuming she is using that money. Then of course xmas money and birthday money. I am just so worried about her. I have tried the sympathtic approach because of course if it makes her feel better I don't want her to suffer, but I also just want her to use it when she really needs it.
I'm just so frustrated and don't really know how to handle the situation. Thanks for sharing and listening to me rant.
Posted by 4Seasons (Member # 14601) on :
tls, I think that having a teen with Lyme must be the one of the most worrisome jobs on the planet! It is so hard to know how to handle them when their brains are not fully developed, yet they think they know everything.
I agree with Metallic Blue that there is a appropriate place for medical grade marijuana in pain and nausea management (it helped my daughter immensely) and yet, clearly your daughter is not using it appropriately. You are in a really tough spot about that, but the good news is that there is a low addiction potential.
It sounds like she is having a hard time facing the fact that she can't have a normal college experience and is trying to escape that. It is good that you have a plan for her to return to a closer college. My guess/hope is that when that happens she will find that in order to do well in school she will have to give up the pot. Underneath her suffering is the same level-headed girl you had before.
My 16 year old is currently doing well symptom-wise, but she is so traumatized by the awful experience that she lived through that she is in total denial about the need for continuing treatment and the relapse potential. I worry constantly about her and especially about how she will do away at college without me to watch over her.
I think this is the dilemma of parents of teens with Lyme. We have taken good care of our kids all their lives and now they don't want to listen to reason. It's incredibly hard.
I wish I had some great words of wisdom for you. It sounds like you are doing the best for your daughter that you can. Please try to remember that, and that you cannot save her from making her own mistakes as much as you want to.
There is so much you are doing right - getting her back in treatment, maintaining a close relationship, brainstorming about the future. Focus on what is going right and reinforce that with her.
I wish I had something more to offer....
[ 02-23-2011, 05:46 PM: Message edited by: 4Seasons ]
Posted by momofthree (Member # 19490) on :
I had this issue my one of my sick kids too. I wondered if it was abuse or just a way to minimize the pain. The question I asked my child was "if someone drank as much alcohol as you are smoking pot would you consider them an alcoholic?" The child who used to use pot so much is now turning 21 and is not abusing anything at all now. It could just be a new phase to deal with the complete depression of having to move home and the feeling of failure she may have. That was the biggest problem we had to face was the low self esteem of not getting to follow through with the college away from home.
Posted by BoxerMom (Member # 25251) on :
I should clarify my earlier statement, as I would never insult or demean someone with LD. It's a horrible disease with profound effects on the brain. And it rearranges entire lives, and not for the better.
The teens/20s I know who use their Lyme to manipulate their parents were like this before Lyme. The Lyme just seems to intensify the family dynamic. And the behavior isn't conscious. The relationships in the family don't seem to allow anyone to get what they need, so all kinds of subtle (and not-so-subtle) manipulations are in play. I wasn't trying to imply that it is calculated manipulation. Or that your child is like that.
I shouldn't use words like "manipulate" on a board. I think lots of people use unconscious, subtle manipulations to get their way. Tones of voice, postures, actions. And I think kids do it because they are still learning about their own emotional lives and how to communicate.
(Actually, I think most adults are still learning about their own emotional lives and how to communicate. My husband spent the first four years of our marriage employing the silent treatment whenever he wanted something from me.)
But words like that sound negative, and, of course, people will defend themselves and their kids from that kind of characterization. So, I'm sorry.
I also know teens/20s who are trying to get well. And their brains and lives are different than adult brains and lives, so their coping strategies look different from ours.
I feel for all the parents of children with Lyme. It's a completely different ballgame when the kids are sick.
Your daughter got well once. She can get well again.
I've probably put my foot very deeply into my mouth with this post.
Posted by randibear (Member # 11290) on :
i'm sorry but i disagree with the "kumbaya" type of thing.
i've seen how my parents treated my sister, pleading, begging, talking, giving her money, cars, etc., everything you mention.
she only got worse and her attitude got worse too.
now she's 60 years old and cannot function in today's society. she can't handle a checkbook and barely makes ends meet.
i've also seen this happen with my other sister's children. one is an alcholic and the other is a, well, gutter snipe. she's lower than low. there's nothing she hasn't done (arrested for being a drug dealer, prostitute, you name it) and will not do.
these children were raised with the best clothing, schools, treated very well and look how they turned out.
sorry but it doesn't always work. at some point you have to turn them loose and pray for the best.
i've seen too many children come from the ghettos and appalachia make it to have a lot of sympathy for those who can't when they're handed everything.
well my foot is in mouth too. so fire away...
Posted by tls122269 (Member # 23200) on :
I don't feel insulted by anything anyone has said on here. I ask for all opinions and they are all welcome. I love to hear different opinions.
Boxermom - I wonder whether she is manipulating the system all the time. On one hand I want her to feel better so I think okay getting high every now and then isn't so bad, but that isn't the way its been lately. I think she is totally manipulating the system now. On the other hand I want to maintain the open relationship that we have so I try not to scream all the time. It's a very fine line...bottom line is I'm her mom not her friend first.
randibear - I wish I could be strong and just cut her off from everything (believe me I have been working on it at counseling for myself). The real problem is the exhusband. He just gives her everything and I keep telling him he is going to regret it. But of course when she is hating me and loving him because he gives her what she wants it makes me crazy.
Please don't stop the comments...like I said I want to hear all opinions. Thank you so much for listening...it really does help and gives me alot of thinking to do.
Posted by lpkayak (Member # 5230) on :
there is something positive here. she accepts that she has lyme and needs tx. both of mine refused tx once the acute stage was over. they have survived...and been quite successful...but i still see sx and wonder when they will get out of hand
Posted by kidsgotlyme (Member # 23691) on :
tls, I don't have anything else to add except hang in there. I have a teen, and I know how hard it is. We want what's best for them, but at the same time we have to let them make their own mistakes.
It would be nice if her dad would get on board with you but he sounds like a moron, imo. If you give a child everything without them having to work for it, it makes for pretty poor adults.
Posted by momlyme (Member # 27775) on :
So, at what point does mothering stop and adulthood kick in? My mother and I are friends now. When I was 17 we got in a fight that lasted 4 years... we didn't talk for 4 long, hurtful years.
We patched things up when I became disabled at 21. Now we are friends.
I feel that when my children reach adulthood I have done my job... now it's their turn. If I don't like what they choose, I can choose to not participate.
I do not fight of try to change who they choose to become... I listen and I am their friend.
Mothering is done. I have taught them what they know. Values, work ethic, kindness, prayer... Now they must live the life they make for themselves.
You said you are afraid you will lose her to her father. I say go. She will come back. If you love someone you need to let them go. Love them with all your heart and trust that they will be OK.
My 19 year old lives with her father because he lets her party and live with her 23 year old boyfriend rent free. I would not allow that in my house.
She comes over to talk and have dinner, we do things together, she calls me, facebooks me, texts me... we have a good relationship.
Neither of my adult children are suffering with LD or need special medical care. So, this complicates things a bit. But still, if they did not want to live by my rules, they would not live under my roof.
That's just me.
Posted by tls122269 (Member # 23200) on :
Well I had a good long talk with my daughter tonight...not a screaming match but an actual discussion. I told her the things that have been worrying me and she understands my concern. She is feeling disappointed at not being able to go back to college this semester, but she says she is in an okay place with that right now. She said she wants to get well and she is going to concentrate on that. She does agree that maybe she is smoking out of boredom. She said she was going to make a conscience effort to cut back.
I know that she is 19 and I have to let go. It's just so hard when you are in control of everything in their life and now you can't be (yes I know I have control issues...working on that as well with my shrink). It makes it even worse when they are sick and all you want is to make them better. I guess all I can do is hope and pray that everything will work out alright.
Again thanks to everyone and prayers for everyone.
Posted by AlanaSuzanne (Member # 25882) on :
I am so glad you had a heart-to-heart with your daughter. It sounds like it went as well as it could. I think it is such a good idea to make sure those conversations happen regularly. I am going to do just that myself.
The letting go---it sure would be easier if they were healthy. I don't know if you have control issues. If you were a control freak, I doubt your daughter would have gone to college 6 hours away.
I think like you said you're in control of EVERYTHING in their lives when they're sick. All your time/energy is taken up in the quest to get them well.
These kids didn't go through the "normal" HS experiences. They didn't have a first job, weren't driving at 16/17, didn't go to parties and sporting events or had that first date. And if they dated or socialized at all, it was complicated due to this unexplainable, incredibly frustrating illness.
Show me a healthy teen who understands what a sick kid is going through and I'll nominate him/her as the next Mother Theresa. The friends just don't get it.
Sick kids don't know what it's like to be a carefree teenager. All they know is their bed, their home, their meds, their supplements, their doctor appointments, labs, eating right, detoxing, IVs, etc. etc. How can they NOT be upset and somewhat rebellious?
Those HS years are crucial to attaining independence. But when kids are sick, there is no independence, other than what they dream of.
As parents all we can do is support those dreams and encourage our kids to achieve whatever they can in life. When they're sick, a certain degree of latitude is needed IMO.
At the same time we are the gatekeepers of our families. We have to let our children know that there are certain standards/guidelines/rules that are in effect whether they are sick or healthy.
I like to think of this as the iron fist wearing a lace glove. I am not sure how I would react if I had an ex who let my young daughter live with a BF as in Heather's situation. I would hope that the iron underneath the lace would be visible enough to prevent that situation. But unless you've walked in someone's shoes...
Anyway, sorry for going on and on. I wish you and your daughter all the best. It's a difficult road to travel. I think you are a good mom and doing the best you can possibly do.
Posted by momlyme (Member # 27775) on :
tls... that is a wonderful start.
I hope when you were done talking, you hugged.
The love between a mother and daughter is never-ending and unconditional.
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by tls122269: Well I had a good long talk with my daughter tonight...not a screaming match but an actual discussion. I told her the things that have been worrying me and she understands my concern. She is feeling disappointed at not being able to go back to college this semester, but she says she is in an okay place with that right now. She said she wants to get well and she is going to concentrate on that. She does agree that maybe she is smoking out of boredom. She said she was going to make a conscience effort to cut back.
I know that she is 19 and I have to let go. It's just so hard when you are in control of everything in their life and now you can't be (yes I know I have control issues...working on that as well with my shrink). It makes it even worse when they are sick and all you want is to make them better. I guess all I can do is hope and pray that everything will work out alright.
Again thanks to everyone and prayers for everyone.
You did the right thing.
Here's a little more that I've learned that might help you or others in the future:
People don't like to be treated as though they're incompetent and incapable of making their own decisions even if we think their decisions are wrong. If you want someone to change, commanding them to "CHANGE NOW" isn't going to get you anywhere. Would you like it if someone did it to you? Of course not, you'd want them to approach you in a certain way that made you feel confident and good about choices you'd made in the past, and you'd want them to share their feelings in a way that didn't make you feel bad about yourself or that would hurt your pride. Only then after they've praised you and shown you that you're obviously capable of making good decisions will someone put their guard down and be receptive to guidance not commands. More often than not people will actually take the guidance if they know it's coming from someone sincere and who they trust.
If you throw out this advice and say "Oh well that advice didn't work on my drug addicted alcoholic schizophrenic daughter who is brain damaged" then you'd be missing the entire point. Of course it's not going to work in some situations where the person "IS" incompetent and incapable. The point is that this works most of the time. Isn't that a great reason to actually try it first before using the tough love approach that really just leads to resentment and resistance? It's true that maybe in the future in some cases of tough love: after they've rebelled and suffered they may say "Oh I'm really glad my parents were hard on me 20 years ago."
Why wait 20 years when you can get them to agree right now and you can be a positive influence who they believe is on their side "today" not in their 40's. People act like jerks when you treat them like one and or act like one. People usually mirror the way they're spoken to, especially children and teenagers.
You're going to become a guru mom at this rate! Keep up the great work. Keep the "smart" communication coming. Always avoid arguments, they lead no where. Always praise and sincerely express your "positive" expectations while giving guidance. People have a strange way of "wanting" to live up to your expectations if they believe you are sincere. Respect usually gives birth to reciprocation of respect too, just like giving. If you give someone a gift, they usually feel good about doing the same in return, and half the time they give you literally twice as much. More bees with honey than vinegar. Trusted true wisdom!
Posted by randibear (Member # 11290) on :
i can't really be giving any advice.
i grew up in a violently abusive home. my father was a beater, yeller, you name it.
so forgive me for my comments. i see things differently.
Posted by tls122269 (Member # 23200) on :
randibear - I've always wanted my kids to grow up with everything that I didn't have. Now my exhusband is in the situation to give them that, but the problem is my kids have too much. I realize they are spoiled and I try every day of my life to teach them to appreciate everything that they have. I think I've done a good job of that since all of my kids have come to me on different occasions and told me thank you for the things they have and also my kids are very generous. They always want to give to people who are less fortunate than them.
No worries about your comments...everyone's opinion is valuable.
Posted by AlanaSuzanne (Member # 25882) on :
Metallic, I always appreciate your thoughtful comments. I really think you should consider being a therapist.
Randi, sorry to hear about your upbringing. How can you not see things differently?
tis, I think a lot of people feel the same way--wanting to give our kids what we didn't have.
Lots of kids have too much and just don't know any better. I think that's mainly because their parents haven't clued them in.
The fact that your kids have thanked you for what they have, are generous and want to give to those less fortunate means that you've done a very good job of raising them.
You should be patting yourself on the back.
Posted by METALLlC BLUE (Member # 6628) on :
Thank you for the compliment Alana, but the last thing I want to spend my life doing is listening to other people's problems once I'm well.
I am not remotely passionate about that.
At any rate, I'm glad things are better for your TLS. Posted by farraday (Member # 21494) on :
Metallic B, Well said!!! We have gone through this with our kids and I was rebellious and ill when I was in college. I had to give up a scholarship and stay closer to home at first because I had to see my doctor so often. I was lucky to have made it through college. My poor parents...
Soooo now, as we prepare our home to receive our son and his three kids and dysfunctional wife we are thinking a lot about expressing feelings and dealing sensibly with children.
They respond so well to respect and to "I feel" statements. We try to set an example of courtesy and self control. We will, hopefully, provide the structure that is lacking in their current home. We never have problems with them and I think that is because a. we are older and more experienced than their parents b. we are not their parents c. we are happy people, in spite of serious health issues
When our daughter was a rebellious teen, she ran away. Several times. We always found her, the police all knew her well and liked her. Finally we sat down with her and asked what was wrong, what did she need. She said that she wanted her freedom. She did not like having to be home when we said and follow all of our "stupid" rules.
So we negotiated. Which rules could we bend, and which ones were inviolate. We worked out a three year deal, with her receiving more freedom each year. She was quite reasonable....maybe because we were, too. What a relief to see her graduate from college!!!
Our granddaughter is texting us daily, we know she wants to be here. I just hope I can keep getting stronger and can handle her early teen problems as well as deal with her overactive younger brothers. One time as I arrived at their house, their uncle smiled and announced "The voice of authority has arrived!" I was flattered.
Sometimes the less you say, the more power you have. Doing something together builds trust and respect. Barking orders has the opposite result. I would never ask a kid to do something that I would not do myself, if I were physically able. I try always to roll up my sleeves, get in there and do things with them. Works like magic!
You should see the photo of my wonderful mother in law, former school teacher, showing our little daughter how to use a hula hoop! Priceless! She is now 103! No, not my daughter, my mother in law! Posted by METALLlC BLUE (Member # 6628) on :
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