Guess I am just seeking a little bit of support and understanding here.
Just got off the phone with my mom, and I just don't know where to go with her, anymore.
First, she told me about her friend, who just shared with her that she had Lyme disease, "years ago," then took antibiotics for "a few months," and she was all better for several years....until a couple of months ago.
This woman then went back on antibiotics, and she took them for two months, and now she is "fine again." All better now.
Further, there are two other friends of my moms who had Lyme, and were able to "cure" their Lyme disease with just a "few months" of antibiotics. One caught it right away, and it never returned. The other had a relapse, then got back on antibiotics for a short time, "less than six months," and has now been "fine" for many years.
So, now mom has THREE friends with these examples of Lyme, and says to me, Wouldn't that be nice if you could take abx for two months and get better? Maybe you should try that? She frowns upon my natural treatment and does not understand it. I am getting too tired and weary to try to explain anymore. She won't listen, anyway.
To her, this is "proof" that I am doing the wrong thing (by listening to my doctor!), because, according to her, I could be well by taking abx for two months. After all, THREE examples. How do you explain that one?
Then, at the end of our conversation, I brought up, again, how I wanted my oldest son to be able to afford testing, because I highly suspect Lyme disease.
She then says to me, "Oh, you think everyone has Lyme Disease," and then also shared with me, for about the fifth time that my oldest brother called ME a hypochondriac for many years.
I just told her that I am sorry he felt that way, and that I do NOT believe EVERYONE has Lyme Disease, but that my oldest son has so many symptoms, that it is my wish he at least rule it out, someday...and soon.
I am so hurt right now. And when I am so tired and down from the Lyme, I am super sensitive and hurt by her words.
Thanks. Just had to vent.
-------------------- Best Wishes,
Hope
"Hope is a good thing, maybe the best of things, and no good thing ever dies."
~~The Shawshank Redemption~~ Posts: 234 | From Minnesota | Registered: Dec 2010
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
Hi HopesAlive,
I'm so sorry you have no support from your family. Like you I have zero support from my family with the exception of my husband and mother in law. No one believes that I'm am as sick as I said and for as long as I have been. It doesn't help when I don't have any outward appearances of being sick either! So over the years I learned to not talk to them about it. It really hurt my feelings at first and I would cry and cry until one day Hubby said "Why are you doing the same things and expecting different results?" That was when I realized I can't change them but I can change how I respond to their indifferences.
So now I only talk to people who understand or care about my condition. Which is fine... I don't want Lyme to be the focal point of my life... so my relationship with them is the same minus Lyme.
I hope you find your support else where and just don't give their words the power to hurt you anymore. You can't control what they say or think but you can control how YOU response to them!! Hugs!!
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Dang, I am sorry. Alot of people suggest to others when loved ones or friends don't understand LD that perhaps watching Under Our Skin can be very helpful to achieve a deeper understanding of how LD can affect people differently.
She doesn't understand, Hopesalive...doesn't mean she doesn't love you more than anything. As moms we just want our children to be well and living their lives and when that doesn't happen perhaps she makes "light" of the situation so she can deal with it in her own mind.
I know people that have/had LD and did the same thing that your mom was telling you about and had the same results...abxs for a few months and fine...etc...can't figure that out, but I think what she is telling you is true...suppose when she has proof of LD being able to be resolved in such a manner makes it hard for her to understand your predictament.
Get her to watch the documentary...ask her to do it for you...then after she watches it, have a heart to heart.
Sue
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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James1979
Unregistered
posted
I agree with scorpio's assessment: although it sounds difficult, maybe you just need a little time away from your mom right now, if that is at all possible.
I've found that with circumstances like these, time is the greatest healer. Every day that passes, her words will hurt less.
Don't be so insistent on trying to convince her about chronic Lyme. Sometimes people just don't change their minds, and there are way too many (corrupt) sources that they can pull quotes from which support their viewpoints.
When I am around people that don't understand Lyme, I just never mention it. It prevents us from having many stressful situations.
Sooner or later the truth about chronic Lyme will come out, and everybody else will be proven wrong. Just wait for that day with HOPE (like I am), and it makes it much easier to be patient with the ignorant for now.
I apologize if my words bothered you.
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
Oh Lord I get this all the time.
Just about everybody in my family ( except my husband and sister ) believe Lyme is very easily curable and that I must just be milking this for sympathy.
They claim to all know someone who had it and got better very fast.
A few years ago, before my diagnosis but when I was still VERY sick, my mom must've been exasperated with me because she complained to her doctor that my health issue was stressing her out.
Her doctor told her that I was a big girl and I needed to put on my big girl panties and take care of myself, and that my mom did not have to worry about me.
She said something to my sister about they just need to let me hit rock bottom and I will then find my own way out.
So, she took her doctor's advice, stopped calling and stopped helping me. All she does now is make sure she can go on as many vacations and trips as she can. Cruising is her new past time.
We have not had any relationship now for 2 years.
She cruises, goes to NYC, and travels just to travel, while I fight for my life.
It baffles my mind. I cannot imagine ditching my daughter like that if she were sick, no matter how old she was.
Posts: 1142 | From South | Registered: Dec 2010
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
me too. so many of us live this way. that is why LN is so impt and good for us i think
the old "you don't get it til you get it" thing
i liked this:
So now I only talk to people who understand or care about my condition. Which is fine... I don't want Lyme to be the focal point of my life... so my relationship with them is the same minus Lyme.
I hope you find your support else where and just don't give their words the power to hurt you anymore. You can't control what they say or think but you can control how YOU response to them!! Hugs!!
it makes sense...but i do know that no matter how much we try to be sensible it stings when a loved one discounts what you are going thru
my kids can say one word and and give a little look and it hurts to the core... hang in
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Thank you all for your understanding and none of your words would ever bother me.
I just really get tired of this with her. And I try not to bring it up too often. In fact, when I went home for Thanksgiving, newly diagnosed, I told my family that we would talk about Lyme for TEN minutes, and they could ask questions, then it would be OFF LIMITS for the rest of the day.
I did that, because I actually do NOT want to focus on myself, my disease, or be defined by it.
Then, I sent out an email to family and friends and explained what was happening with me, so like someone with a cast on their arm, I would not have to explain my story over and over and over again.
I make it clear that I always welcome questions in the name of education and awareness.
I have said, from the beginning, that I can handle ANYTHING and this entire thing, too, as long as I have the love and support of those who are the dearest to me in this world: my three sons. And, I have that. For that, I am forever grateful. Now, THAT would hurt me more than anything, and I do know there are some whose children....their OWN children!...have turned their backs on them and/or do not believe they have Lyme.
I also have a few VERY understanding and supportive friends, and I am grateful for those friends, because understanding all this cannot be easy!
I don't know why I let her get to me. You all have great advice. My oldest son says I should not talk to her so often, and maybe I should cool it some. It is just that she is older now, and I have no idea how long I will have her, and I want to be a loyal daughter. It just seems that so many times and in so many of her words she is so intentionally HURTFUL. And, from the relationship that I have with my own sons, I cannot understand why she would want to be that way.
I accepted it a long time ago, as her friends and my friend would tell me what a wonderful person she is, how I have the kindest, most giving mother in the world. However, they don't see that side of her that is so darn hurtful. I guess it is the closeness of the relationship that gets her tied up into the emotions of it all and she says things without thinking.
For example, she had a young woman who was a neighbor who would come over and vent to her and my mom would listen so kindly and be so understanding and talk to her about her problems. But, she cannot do that with me, because of the emotional bond or connection, I guess. Which seems like a paradox, but that is the way I see it.
If that even makes sense, lol. Having trouble with the ole brain in the past few days, so I hope it did.
Thank you for your wonderful, and instant, support. I do appreciate it very much!
-------------------- Best Wishes,
Hope
"Hope is a good thing, maybe the best of things, and no good thing ever dies."
~~The Shawshank Redemption~~ Posts: 234 | From Minnesota | Registered: Dec 2010
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posted
Hambone, I am so sorry that your mom is that cold to you! Oh my gosh, I just cannot imagine, saying they will let you hit rock bottom?
Thank goodness you have your husband and sister. You need to have SOMEONE.
I had a friend actually email and tell me that she did not want to be my friend anymore, because I could not go to many gatherings anymore. lol! I mean I did actually have to laugh at that one.
This was a woman who I attended her birthday party, but on my birthday did not get so much as an email or phone call and who, when she broke her ankle, I arranged for a bunch of us to bring her a nice meal, and sat and ate with her, etc.
And she had the nerve to tell ME that it had to work both ways? What?
To me, it sounded exactly like a third grader, who disappointed in her friend says, "I am not going to be your friend anymore." lol
Friends like that were never friends and I can easily do without her. I am actually pleased that she showed me her "true colors."
Had it been me, I would have just said, "Please join us when you can, and please let me know if you need anything." Funny she didn't think to say anything near to that, which showed me the type of person she really is. Selfish and self-absorbed. We don't need negative people like that in our lives to begin with.
And it makes me all the more grateful for those who are still at my side.
-------------------- Best Wishes,
Hope
"Hope is a good thing, maybe the best of things, and no good thing ever dies."
~~The Shawshank Redemption~~ Posts: 234 | From Minnesota | Registered: Dec 2010
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"I actually do NOT want to focus on myself, my disease, or be defined by it."
That very statement shows your character. You are a very strong woman and I applaud you.
You have your 3 sons. Your oldest says you should cool it with her. He is right. You have a few understanding friends---treasure them.
Yes, she is "older" now. But you are the sick one and need to take care of yourself so you can take care of your boys.
You ARE a GOOD daughter for giving this situation so much thought. Sometimes being good isn't good enough for some people, including our own parents and even our own kids at times.
The "loyal" thing can really do a number on daughters. How loyal should a person be to a parent who intentionally inflicts hurt? Tough question, as it is always preferable to think things can change.
You have to put yourself, your husband and your children first. Your mom, unfortunately, needs to be on the back burner of your life at this point as she has chosen to hurt you. Just do the obligatory holidays, birthdays, Sunday dinners -- as much as you can stomach.
Go into neutral gear and stop investing your emotions with her. She's your mom. You love her. She loves you (eventhough she's not showing it). She's not helping your emotional/mental/physical health. She is who she is, you are who you are. Your priorities are your health, your boys, your family. You can't change her. All you can do is deal with her on your own terms. YOUR terms.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Wow Hambone...so darn sorry.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I have a story you might like:
A friend of mine with Lyme was always talking about a friend of hers who got Lyme and cured it by some weeklong spa treatment. She wanted to know if I thought she should try something like that. I told her it was up to her what she did for her Lyme, but how did she really know her friend was cured?
Well, she hadn't seen this friend in years, but recently visited. She got a peek at all the meds her friend takes (hmmmm....violation of privacy here?), and the friend is on many, many CNS acting meds. Pain meds, seizure meds, antianxiety meds, sleep meds, antidepressants...you get the picture.
Just because someone says their Lyme is cured, doesn't mean that it is. Some people simply always believe their doctors, no matter what evidence contadicts those opinions.
(I'm not saying this is true of your mom's friends/examples. I just thought you would like the story.)
We're living outside of the standard medical paradigm. For most people, you go to the doctor, do what s/he says, and get well.
In OUR world, we research and make our own decisions, and we often view doctors as the gatekeepers who can grant or deny us access to what we need! We are very much our own doctors.
We are proactive about our illnesses. This turns the whole doctor/patient relationship on its head, and that is very upsetting to people! Why don't we just listen to our doctors?
Do your best to let this go. Your decisions are yours to make. She is living in the standard paradigm and will not likely be brought into yours. Your "realities" are different.
And her words ARE hurtful. You're not overreacting. Don't give her a chance to talk to you this way. Tell her you are doing great with your Lyme treatment and change the subject!
daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
Hi Hope,
So glad you shared with us. We are here to encourage you and be a support for you and one another. I don't want to reiterate what others have said, although I could.
It is easy for us to get hurt when we are not able to protect ourselves with boundaries. And it's hardest to have healthy boundaries with the people we love.
We end up being vulnerable and defensive and try to "explain" and that rarely is productive and like you shared your mom doesn't listen.
Let me explain what I mean. Through the years I've learned ways to help take care of me.
This is what not being defensive looks like:
Mom goes on and on about her friends who are better...
"Mom, so glad about your friends getting the help they need with antibiotics and getting better."
Mom continues going on and on about her friends...better...
"Mom, that's great they got 'cured" through antibiotics."
Mom says one caught it right away...
"Mom, yeah that is best when it's caught right away."
You posted, "To her, this is "proof" that I am doing the wrong thing (by listening to my doctor!), because, according to her, I could be well by taking abx for two months. After all, THREE examples. How do you explain that one?""
"Mom, I know you care about me. That is great about your friends. I'll check out the antibiotics your friends took. Just get me the names of the antibiotics. Thanks."
(Now that doesn't mean you're actually going to take any.)
Your mom's response about your son...mom says, "Oh, you think everyone has Lyme Disease,"
"Mom, oh, wow, thanks for pointing that out."
Your oldest brother calls you a hypochondriac.
"Brother, I can understand how you could think that."
Seriously, we owe no person an explanation. Trying to defend ourselves and make our point to people who are not even willing to listen...steals our energy and even the potential for our joy and hope.
Having good boundaries is very healthy, not only in moving forward to fight this disease, whatever healing path a person chooses, but in moving forward with life (even if a person doesn't have Lyme).
Hope, sorry you are hurting now and extra sensitive. If you have questions ask or PM me.
That saying, "Sticks and stones may break my bones but names will never hurt me."
Not true! That's why boundaries to protect our heart and emotions are important.
HOPE really is a great thing...I so agree with your signature saying.
Praying you have a good night's rest, have renewed hope, and that God continue to lead you on your healing path.
Posts: 2188 | From Oklahoma | Registered: May 2008
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posted
Thank you, all, for your kind and wise words. I have a lot to think about.
And, even though my mom tells everyone that we have a very "close" relationship, I have never felt the same.
When I visit, I know my tolerance level: two overnights MAX. I did visit her in Florida for an entire week in March, but I just followed her leave and as long as it was "her agenda" it was more tolerable, although we did butt heads a couple of times.
It is not just with Lyme that she has been this way with me. And, I do have to try to limit the interactions with her, the phone calls, etc.
I actually called her today, because I was feeling bad and just needed to talk to someone. Bad choice of who to call, lol.
Anyway, yes I have my three grown sons (no husband), and I love them dearly. The four of us are quite close (and I think they DO feel the same way about me!) and my greatest joy, my greatest, most positive moments are when we are all in the same room together, talking and laughing. I am so very grateful for them.
I have a lot to absorb here, but you all speak very wise words that make sense to me.
Thanks, again, for letting me vent.
-------------------- Best Wishes,
Hope
"Hope is a good thing, maybe the best of things, and no good thing ever dies."
~~The Shawshank Redemption~~ Posts: 234 | From Minnesota | Registered: Dec 2010
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James1979
Unregistered
posted
Boxermom and daisyrib - I really liked your advice. Thanks.
Sorry Hope, you ain't the only one benefitting from this thread! lol
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posted
Hope, Interesting you say this. My Mom also has had two lady friends ( actually both are old friends of our family ) who each got Lyme and supposedly cured it with a short ABX treatment.
Both of these women were in their sixties also when they where infected and they had rashes.
One of them was actually bitten three separate times in her back yard ( our old neighborhood ) and was treated each time and cured.
My Mom does not guilt me for this. I think both these women ( I talked to the one who was bit three times )were treated early enough.
But it does baffle me how they have never had anymore problems.
I am sorry to hear your Mom is doing this with you. Mine has a tendancy to guilt me for the not working aspect more than anything else.
Thankyou for sharing this and I hope things improve.
-------------------- Please take nothing I say as medical advice, I am not a doctor Posts: 18 | From East Coast | Registered: Nov 2010
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James1979
Unregistered
posted
There's a 35-40% chance of relapse when someone has been treated for 1 month or less for Lyme. This has been known for over 20 years now, but the information is suppressed by the Powers That Be. For this reason, it is not surprising that many people are "cured" with short-term abx. But still, 35-40% of people are not cured, and that's a lot of people.
Back in the early 80's when Steere used to be friends with Burrascano, Steere asked Burrascano if he could borrow some of his Lyme patients for an abx trial. Dr B gave him some patients, and Dr S did the trial. His results showed that 2-4 weeks of abx cured most people of Lyme, and he sent the patients back to Dr B. A few weeks later, Dr B calls Dr S and says "about 40% of the patients you sent back to me had a relapse, and they're sick again now." Dr S couldn't bear hearing that, so he became angry, and from that point on they all started calling Dr B a "quack".
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posted
James, do not be sorry! That is what I love about our online support. We DO benefit from one another's posts, and we never know when what we post or what question we may choose to ask will benefit someone else. I am happy to help, lol!
Today is a new day, and I am trying to accomplish a few things, so I can feel good about myself. Counting my blessings and all the positive people who are in my life.
You are all so supportive and I thank you once again!
-------------------- Best Wishes,
Hope
"Hope is a good thing, maybe the best of things, and no good thing ever dies."
~~The Shawshank Redemption~~ Posts: 234 | From Minnesota | Registered: Dec 2010
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