Had to visit my boyfriends parents last night. Its far from my favorite activity. His mother (a nurse) decided to finally ask me about the Lyme.
She has known for about 3 months, as long as I have known about the relapse myself, but hasn't said a word to me. Had never asked how I am doing, nothing.
I'll backtrack quickly and mention that they knew me during both of my previous IV rounds, I just was not their son's girlfriend the first time, so they know this isn't new to me. They also know my family very well and that we have all battled this as some point.
Well, she asks how I am feeling... and thrusts some stuff in my face that she looked up online in her "access available only to me since I am a nurse" location. At first I thought, "I prolly know this stuff but I appreciate the thought"
Until she speaks, "This doctor says chronic lyme doesn't exist."
I cringe. I start to scan over the stuff she gave me, it all supports this theory. My favorite line, "There are no documented cases of Chronic Lyme Disease." So I guess this info isn't meant to help me out.
"He says once its gone, you can't get it again without a new bite."
I tell her that maybe the theory could be correct, but the problem seems to rest in being able to actually get rid of it. I'm trying to humour her. I was diagnosed very late stage, 5 years in roughly, with mostly neuro symptoms so it hasn't been an easy fix.
"Maybe you should get a second opinion."
I wanted to scream at her! Really, a second opinion you say? I can't believe I didn't think of that! I mean, the 4 different labs and the LLMD and the neurologist and the neuropsychologist they must all be wrong! The 7 years of blood tests, from 4 different labs, they must be wrong too! Oh, and the massive improvement I made on treatment, must have been a total coincidence.
I always figured I had a 2nd, 3rd, 4th, etc... opinion. But now that you bring it up, wow, everything else must have been wrong. Thank you so much for suggesting a second opinion to me because I am so Lyme ignorant that I truly need your opinion.
I can handle most aspects of this disease, but when I get second guessing instead of support from the closest thing I have to "family" up here... That's when I cry.
*sigh*
Posted by Lymetoo (Member # 743) on :
Disgusting, isn't it!? She should be ashamed, but I guess she thinks she's helping you. Maybe you could ask her what good it would do to be dxd with something else, like MS, FM, ALS, or whatever your symptoms fit.
If you are IMPROVING on abx, then what the hey!?
Why don't you take some time to cool off and then send her a nice calm, well thought out email....complete with nice links of medical studies?
Posted by 3greatkids (Member # 3838) on :
Hang in there.
If we told friends and family we had cancer(God forbid),or any disease besides this,we would have an abundance of
Telling people you have Lyme,Babesia,et al.we have to put up w/
I suppose at one time or another all of us had insulting family members question our progress.
Yeap,I got that mandatory casserole,get well card and then...lator gator.
Be strong.
Posted by sizzled (Member # 1357) on :
If someone showed me that, I would bury them in medical studies showing how chronic Lyme can persist....
Posted by jedibelle (Member # 3794) on :
Thanks guys! I was explaining to my boyfriend the same thing, its not like they would ever say to me "You already had radiation and chemo, it should be gone now."
It feels like, especially from them, it is a lot of exasperated "I thought that was done with already" when it should be a thoughtful "I thought/hoped you were done with that, I'm sorry."
I will look up more info and pass it to her when I feel up to dealing with it. It almost felt like she was expecting me to go "really? doesn't exist?! I feel all better now, thanks for telling me!" LOL.
Posted by Geneal (Member # 10375) on :
Dear Jedibelle,
I hope she was trying to be helpful and not spiteful and compete for her son's attention.
Ignorance can hurt others. I certainly would send her some studies that document the proof of chronic lyme.
However, you don't have to prove your illness or yourself to anyone.
As much as it would have pained me (deep, down, wrench my stomach out with your hand through my mouth pain)
I would have gritted my teeth and said as politely as I could
"I appreciate your interest in Lyme disease. However, there is documented evidence of chronic lyme disease.
I just hope and pray that you are never afflicted with it".
Hang in there. That Mom sounds like she has a different agenda going.
Hugs,
Geneal
Posted by justag (Member # 11145) on :
My husband used to question me on lyme disease...But he's now very understanding seeing how much I've improved on abx (still no positive blood test yet).
Hang in there and ignore those negative impacts, family or not Posted by Carol in PA (Member # 5338) on :
I wonder if they're annoyed that their son got involved with a woman who is not "perfect."
Carol
Posted by jedibelle (Member # 3794) on :
Funny you should say that... His mother definitely harbours some over-protective issues towards her son and likely does think of me as not good enough. (There is a long story there, but its not Lyme related.)Luckily he is very VERY far from being a Mama's boy
Strangely, I can handle that much better than I can the back-handed "support" she is giving out now. Or maybe, not so strange...
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Geneal: "I appreciate your interest in Lyme disease. However, there is documented evidence of chronic lyme disease.
I just hope and pray that you are never afflicted with it".
That's good!
Posted by SarahL (Member # 11452) on :
I'm honestly NOT trivializing this, because I *know* it doesn't even compare, but...
Every time I go to my mother in law's, she fixes my hair. Even if I've *just* had it done and tell her that. Even if I ask her very nicely not to. Even if I'm in my pjs and on my way to bed! Seriously. The woman has a *thing* about my hair. It's been long, short, straight, wavy, ponytailed, you name, I've done it. I used to get mad and think it was so disrespectful, now I just think it's funny. My husband and I started guessing how long it will take her to start fixing my hair when we go visit. Last week it was a very short and hilarious 3 minutes. I still had my coat on!
Someday maybe you'll laugh at this, but for now I'll just offer *hugs* and my patented Glare of Vengence for your use.
BTW, my mom's been completely unsupportive of my dx and I'm in shock. We're really close and to hear her say she's not telling anyone I have Lyme unless I have a pos test result... it's hard to swallow. Some people just want so badly for us to be okay that they decide we ARE, I think.
xoxo
Posted by just don (Member # 1129) on :
I think this mentality stems from the old statement we have heard over and over. "But you look so GOOD". Guess it would 'help' to LOOK sick with this disease. I have met a 'bunch' of fellow lymies here and everywhere and each and EVERY one of them,,,I would never have guessed they had lyme. They DID look so good!!
My oldest dear daughter is an RN. She 'researched' this for dear old dad too and printed off the IDSA long 'peer reviewed' facts of the matter,,,"see there is no such thing" and "These guys KNOW what they are talking about"
Guess it only goes to show you that,"UNtil they walk a mile in YOUR shoes,,,they just arent going to undrstand,period!!!"
I explain it alot like this,,,take the worst hangover you EVER had,,,now take the worst flu you EVER had,,,now combine the two,,,and wake up with this for 365 times a year 12 years in a row,,,and fully expect the same for the next 365 days for nest year,times years left to LIVE!!! OR WORSE!!!!
People just cant relate,,,till it hits them smack in the face!!! mostly--just don--
Posted by jedibelle (Member # 3794) on :
Sarah - I'm so sorry to hear about your mom being unsupportive! I don't know what I would do without the support of my parents in this. If only they weren't 500 miles away.
I think I understand your point about her not wanting to admit to it without what she perceives as adequate proof. I love the story about the hair! I wish his mom was that funny, she's just mindless and doesn't get it.
Maybe I should make my skin greenish (lyme greenish?)and sickly with makeup the next time I have to go over there, that I way I can look the way I feel! She'd prolly ignore it... Posted by kam (Member # 3410) on :
I am so sorry. I have yet to learn to be like a duck and let the water roll off my back.
I do wonder when this will all be cleared up and the medical field, family and others will look back and say I am so sorry, I had no idea.
Dream on. RIGHT!
I wish I had words of encouragement. I like what Don said. But, I can't relate to having a hang over because I never had one.
I can relate to what it looks like in the movies though and do think it relates to lyme.
I am rambling. The brain has the weird thing going this am.
I just know that the only thing that has worked for me is to stay away from people who are not supportive as much as possible.
When I was working we use to say "Don't let the Turkey's get you down."
With lyme it is "Don't let the Ducks get you down." Quack Quack Quack Waddle Waddle Waddle
Posted by jedibelle (Member # 3794) on :
I was thinking about the hangover description, and it fits so well for me. Though perhaps not for the same reasons.
My symptoms are neuro, so I feel like the morning after when there is fuzz over every thought. Its like being stoned in a really bad way when you want to be sober.
Try explaining to a skeptic that the symptoms are primarily in your head, but not "in your head" like you are imagining it! It isn't as if I haven't wondered time and time again if I am crazy for thinking I have this thing.
I wish I could just stay away, if it wasn't "family" I would.
For the last week or so, its been ringing in the ears too. I used to enjoy being in the quiet, and now it drives me nuts.
Posted by justag (Member # 11145) on :
Some people tend to understand what I told them about this disease, but when they got to know that my diagnosis is not yet confirmed by any lab work, their suspicious look conqured again...
Posted by Michelle M (Member # 7200) on :
I'm SO sorry, Jedibelle.
It's too bad she is so uneducated about lyme. However, look where she's getting it -- mainstream doctors.
I would gently explain to her that in fact b. burgdorferi CAN persist. Often in the face of repeated antibiotic treatment! I would print out for her these 12 pages, a compilation of studies on persistence:
--while reminding her that this compilation is actually from 2003, and is apt to be much bigger now if updated.
I would let her know the Connecticut Attorney General is actually investigating the IDSA authors her doctors look to for advice, and has already found damning evidence of wrongdoing and competing financial interests.
Then I would direct her to ILADS for further reading, reminding her that since she's a nurse on "the front lines" for treating patients, you wouldn't want to see her appear foolish when it becomes evident that she only repeats what's told to her, without bothering to find out if it's even true.
It's possible she won't invite you for Sunday tea.
But be true to yourself.
Michelle
Posted by TheCrimeOfLyme (Member # 4019) on :
She has no right to meddle in your business and she certainly has no right to tell you to get a second opinion. My ex fiance said once that "sometimes mental problems or negative thinking can make one appear like they still have something when they don't." I should have ended it right then and there.
I hope your b/f doesn't expose you to her chit again. My ex's mother was a nurse. So was his step father, and his sister, ad nauseam. I hope they ALL get lyme. Aren't I ignorant?
Posted by jedibelle (Member # 3794) on :
I would never wish this on her or anyone else, though I most definitely don't blame you for feeling that way!
I think the most messed up bit is that in her twisted lil head she actually believes she is helping me. Ugh. It makes me feel for the life my boyfriend had to grow up in, makes me feel lucky every day for what I had!
Posted by jedibelle (Member # 3794) on :
Well, had to go over to the house again last night. His mother is traveling though. Left her a few articles with a note attached, 'Hope you had a good trip. Thought you might find these interesting'. I figure that doesn't come across as angry or anything that might incite an issue. I hope she reads the stuff and sees that there is more out there than what her "specialty" nursing database shows her...
Posted by Cathy DeVoe (Member # 11271) on :
Boy Jedibelle,,
I know exactly how you feel. My Naturopath did that to me after 20 yrs of dealing with lyme and finally finding a good lyme Dr.
My N wanted me to get a 2nd opinion from a ID Doc.
Like I haven't been there before....a hundred times. So I know your anger....I am proud of you that you responded with the articles.
That is really good of you to try to educate her.
Keep it up girl and vent here whenever you want!
Cathy
Posted by hopeful123 (Member # 3244) on :
imo, just don't waste your time trying to educate her. anyone who is that rude will not be open-minded, anyway.
sorry, sorry, sorry you have to put up with this, too!!
come and vent anytime. although, i hope that you will not need to do so because everything will be peachy keen! Posted by randibear (Member # 11290) on :
Ah, honey, been there done that. I am hubbie's second wife. His mother told him before we married that I was "not good enough" for him.
She wanted him to go to Washington and become a big shot. instead he became a carpenter, then pilot.
She never lets me forget it....
My advise, try not to mention lyme and if you can, which I know is impossible sometimes, try not to be around her. that's what it came down to for me. When we go home, we part at the airport. he told his family, don't expect her, she's with her family and leave her alone.
works for us.....hope you find something that works for you.
Posted by jedibelle (Member # 3794) on :
That's pretty much my plan, no talk about it any more unless she brings it up. The unfortunate thing is that I really can't avoid her. I moved up to Toronto about a year ago for my boyfriend and left my family in CT . His family, however, is up here and we are expected to spend time with them. Tons of fun.
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. His family, however, is up here and we are expected to spend time with them. Tons of fun.