posted
I was just reading the Salt/C munchausen's thread and frankly, this scares me to death.
Last week my husband said that he thought I might be trying to "make" our boys have Lyme in order to get more recognition for "your [my] own plight."
And he said this in a therapy session. (The good thing .. this is primarily my therapist and he is a good one, he knows me and understands that I just want us all to be well)
Later my husband said, by way of some skewed apology, that he didnt think it was on purpose, but that it was probably "unconscious."
Honestly, this does not sound like something he has come up with on his own. He's got a friend with a social work bachelors (i.e. not an LCSW) who loves to play pseudo-therapist, so, who knows what forces are at play.
Interestingly, there were no accusations when my son had Idiopathic Thrombocytopenia Purpurpa, or later when he was diagnosed with Juvenile Rheumatoid Arthritis. I even asked him to define idiopathic in our session, and of course he couldn't.
Needless to say, I was outraged and deeply hurt. He has repeatedly refused my attempts to educate him re testing inadequacies, seronegativity, congenital Lyme, WB results and the significance of specific bands, etc ad nauseum.
Don't get me wrong, he is at heart, a kind man. He has never heard of munchausen's ... I had to explain to him that that was exactly what he was accusing me of. He most certainly does not understand the implications of what he said.
But I have to seriously consider whether to back off or not. I am simply trying to do what I think is best, but there is no simple answer. I think we could all agree that we do not want ANYONE to have Lyme.
So, you've heard it here folks. It's hard enough to feel like you are fighting enormous battles for credibility on the larger fronts of legislature, IDSA BS, CDC BS, big pharma, and the attacks on our doctors; but when you can't even get your spouse to understand ... it is a mind-blowing conundrum.
Worst case scenario, I may have to stand by and do nothing, which to me, is a type of torture that no parent should have to go through.
Hayley
-------------------- "Data over dogma, Evidence over egos, Patients over politics" -- one smart dude from Missouri Posts: 112 | From TN USA | Registered: Nov 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Oh, you poor thing.
I know how hard you have tried.
That would constitute my "line in the sand."
When you have recited a medical history like your son's and this refusal to even try to understand persists, I would be having a very hard time with this.
We are not talking about an asymptomatic child to whom you've tried to ascribe lyme symptoms, for crying out loud.
Do what's right. Your husband is a grownup. Your son is not. Therefore, to me, standing by and doing nothing is not an option.
Then again, that might be why I'm single.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I would definitely not stand back and do nothing. What is more important? The health of the children or the ego of the husband?
Get the kids to an LLMD and have them evaluated. Then your husband can take it up with the doctor.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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-------------------- Daisy Posts: 122 | From at the computer | Registered: Jul 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
HA!
Michelle said... BLAH BLAH BLAH.. Stand up for YOU... blah blah blah.... Do this and that.. blah blah blah...
"Then again, that might be why I'm single."
HA!
Sorry.. that made ME laugh out loud!
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Dear Tngirl.. wonderful mother...
My theory is... kinda based on that old saying, you know...
You can't live WITH men.. and it's still illegal to shoot them.
May I suggest?
After a zillion years dealing with hard headed family members.. and it's funny how strangers ask me my opinion... and actually do what I suggest.. but to get a family member to listen.. I might as well be talking to a chunk of coal. (I usually say oysters.. but in Tennessee I thought coal was a better thing to relate to... since their aren't many oysters in the TN mountains.)
One of the things I noticed that can help is to suddenly recieve a package in the mail.. a Lyme DVD or VCR tape... and after supper when their belly is full and they are stuck there unable to escape.. say to them..
"Hey, I got this short movie in the mail the other day. Let's watch it before the "game" (their favorite show) comes on?".. all the while not letting on you've already seen it.
It is amazing to me how.. IF it is on the TV.. it MUST be true! Duh.. but ok.. I can live with that if it works.
Then put in a good "movie" that a "friend" sent to you.. and let him watch it with you. Chances are it will say things YOU have already said in the past.. and if they see other people complaining about what YOU have said too.. then they will say..
"Gee, she must have something there."
It's just a way to get YOUR point across without hounding and pounding.
WHY they are so lame as to believe what the TV tells them over what their family says.. I dunno? But they are. Sooooooo.. like all good wives do.. use what you must to get your point across.
But remember... like Michelle said..
"Then again, that might be why I'm single."
Actually I've seen this work on a variety of folks. You can get a nice DVD or VCR tape from a support group.. or I think the LDA has them?
I especially liked the ones Dolly Curtis did.. like the interviews with Dr. Jones.. where they explain what is going on with the children... and you see their problems and they can relate them to your kids experiences. And also her video on Lyme in general.. and a doctors talk on Lyme. Sorry I can't recall the names off hand.. but they worked to help a lot of folks learn about Lyme.
Now.. also remember.. this is a GUY you are dealing with. They are always right.. they listen to their buddies more than you... and they just want life to be simple.
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Hayley, your situation with your husband is not unusual. NO one that doesn't know these diseases seems to understand.
And men are used to paying to have something fixed and fixed rather quickly because they can be very impatient. So when throwing a few dollars in the right direction doesn't fix it, they figure something else is going on.
...like it can't be fixed, or someone is pulling their leg and cheating them somehow.
if the kids are not well, maybe they are not really sick..
My husband does not want to know the line by line situation, until there is a dangerous incident He can not handle it. But he is a believer.
Good luck..lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
There is something I probably should have mentioned before, but it is finally sinking in that there is reason to censor what we write about some things.
First, thank you all most sincerely for your replies and suggestions.
Now about this thing, I have taken them to an LLMD, hubby went, it was not good. This is in no way to disparage the MD, but due to circumstances beyond control, they just are not equiped or able to help my kids.
I did not expect that ... at least to the extent that I found it, and it served to shred any bit of credibility w/ hubby I had.
Michelle, I don't know how many lines in the sand I've got left. I'm sick, and he's sick of me being sick. Also, about him being a grown-up ... while technically correct, he's not acting like one in this regard.
I may be joining you in singledom if we cannot work this out. Then he and whatever lawyer he gets can eat me up and spit me out. I really hope not, but it's something I've got to consider, ya know?
Scott, I posted at length about the boys, I'll try and dig it up.
Daisy, thank you for the hug.
Cave, ... see ... key words "ex husband". Imagine trying to refute munchausen's to a family court judge. Then they get no treatment, possibly ever. I agree that I need to be persistant, though.
TC, I will try the video angle. Don't hold your breath, though, he fell asleep in under 10 minutes when we went to see "What the bleep do we know."
"You can't live WITH men.. and it's still illegal to shoot them," lol unless you are Dick Cheney. Seriously, thanks.
LMT, you are exactly right, too bad my kids aren't trucks. I think this is one instance where duck tape (oh the irony abounds) won't work.
Osp, he might get the wrong idea if I tied him up.
I'm trying to have a sense of humor about this, but, honestly, it just sucks. Guess I'll go try and find a video or two. I'm hoping to find another man, lyme literate, that will talk w/ him.
You are all wonderful.
Hayley
-------------------- "Data over dogma, Evidence over egos, Patients over politics" -- one smart dude from Missouri Posts: 112 | From TN USA | Registered: Nov 2005
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posted
It is interesting to read how thick or hard headed men can be. I had increasing problems with short-term memory and concentration for the past l0 years or so. I ended up with 2 divorces and was not diagnosed with Lyme until this past summer.
When I first found this board, I believed that the first ex had Manchausen's. We did foster care for years and adopted 4 kids. She became quite skilled in getting kids diagnosed with things and getting treatment. She would find doctors who tended to agree with her and would provide treatment.
I thought she would sometimes agitate one or more of the kids for no good reason. Her judgment seemed to deteriorate and she experienced increased medical problems herself before the divorce. She is age 42 and had 2 siblings die in the past year.
It was like I had to get hit over the head to see things differently. Last March, I ended up in inpatient psych. treatment and woke up in the hospital with Bell's palsy one morning.
While have no desire to get back with the first ex, I no longer think she has Mauchausen's. Instead, I think she probably has Lyme and possibly the kids also. She works closely with treatment providers. I doubt that she has really listened to me about the need to be evaluated for possible Lyme.
I had remarried a year before I went into the hospital. Ticks were really thick on her farm and I seriously deteriorated during the fall and winter.
I had increasing trouble coping with a variety of things including finding work and doing the job. With my brain fog and even some disassociation, she believed I was faking illness or lieing and manipulating about things. I was stunned that she would not let me return home from the hospital.
She has since divorced me. Although I am educated to help others resolve conflicts, I was at a loss on how to deal with this. I tried to avoid putting pressure on her, but obviously she took this as indifference. It is like I'm still in a state of shock about the divorce.
Even though I have a history of being hard headed,I now know about Lyme disease. I currently have frustration with trying to communicate to others about it. . .and even feel guilty about thinking the first ex had Manchausen's.
I believe that in a family, everybody should know how everybody else feels and everybody's needs should be met. In my marriages, I have failed to achieve that. (Does that statement mean I'm trying to control things too much?)
I have an appointment with my LLMD tomorrow. Maybe he can help keep me on track.
Posts: 159 | From Ecuador | Registered: Apr 2006
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posted
****I believe that in a family, everybody should know how everybody else feels and everybody's needs should be met. In my marriages, I have failed to achieve that. (Does that statement mean I'm trying to control things too much?)****
NO, it just means that you are human! Hang in there!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
I just want you to know I totally understand how you feel. This disease causes your closest family members and bestest of friends to question your sanity about your health issues.
Stay the course and do what is right. Fight for your kids. No one else will do it. If you think they have symptoms don't wait. Get them to a GOOD LLMD and make sure they are tested every which way possible through Igenex. My kids were first tested by PCR through MDL and nothing ever came up. I kept questioning my first LLMD but nothing else was ever done.
I perservered and knew something wasn't right with their health issues. My husband and I have both Lyme and coinfections and I can recognize possible related symptoms when it comes to kids. I finally called Dr. J's office and they ordered the Igenex WB for both boys. BOTH came back CDC positive with multiple bands. My time was wasted on those PCR tests. I knew I should have followed my heart and got treatment for them earlier. One even ended up having Babesia and the other Mycoplasma. They are still in treatment but continue to get well. To top things off my adorable adopted child got bit on Cape COd last year and I had to once again prove that I thought it was tick related even though I didn't see a tick. SHe had a chest rash and crazy symtpoms. FInally got in in contact with Dr. J after the boys positve tests came back and hers was done came back positive for the Bartonella.
I guess my point is, as their mother I am the only one who would pursue the best for their health. I love my husband dearly but he just goes with the flow. He doesn't always side with me or take heart to the cause like I do. We have been suffering for years with this disease and I am the only one who has read a lot on the internet, bought the best books on lyme, sought out the best docotrs, joined support groups, talked to people etc. If would be nice if my lifelong partner did this too bit he just doesn't.
I don't want my family to fall apart as I am sure you don't. Just try to knock some sense into him. Your children are your number one priority and he should be on your side. It's hard enough to fight the disease, let alone have to worry about what family members are siding with you.
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
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bettyg
Unregistered
posted
Hayley, my heart goes out to you fighting to get your kids treated for lyme.
TC, great idea on video and especially Lorenzo's oil; great job Nick Nolte did on that one.
One thing I have learned is that you can't change a person. Everyone has their good and bad points and sometimes they go more to one side than the other!
However, you can provide good soil, sunshine and fertilizer to promote growth. Plant little seeds, then sprinkle with bits of nourishment.
I'm just guessing, based on my experience, that your husband is "unconciously" wanting you to put more attention his way! I know as a mother, our kids come first especially in times of illness. But if you are dealing with chronic illness don't forget that sometimes we need to take care of ourselves and our relationships (spouse & friends) first. In order to be better able to take care of our families and others.
By no means am I suggesting you put your kids on the "back burner", but do some rearranging and reprioritizing. Maybe even have more conversations about your kids without a therapist. I bet he feels it's two against one in there.
One thing I am constantly learning from my mother (did I say that), is tact. Some people are more difficult to deal with than others. I wounldn't say that she's manipulative at all, seriously, but she has a way of talking with people that is the least offensive and somehow she can make you come to the conclusion on your own instead of telling you what you should think.
May I also add my hubby still thinks all things can be cured by the right diet. Afterall he's never been sick- all due to vitamins, garlic and onions! We compromised. I agreed that diet is important in everyone's health (but can't make my dd absorb more B12!!!), and he agrees that he doesn't want to see her suffer anymore.
One important thought in closing... God gave you a mother's intuition for a reason!!!!!!!!!
PS: He didn't give it to your husband or his friend!
Also I just got a copy of the booklet "But you LOOK Good" I found through the newbie links. I think the website is www.myIDA.org Good read! Great info! Your hubby and his friend should have to read this! I printed some of it off to share while we waited on the booklet. Sometimes small bites of info are easier to digest!
Good luck! Hang in there!
MommaK
Posts: 242 | From Mississippi | Registered: Oct 2006
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