Topic: Need Input On explaining to Family,why Lyme and Co's are Not Always Easily Cured
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< Lyme Family >>>>>,
I know this has been discussed at length, but anyone who has had experience in explaining the problems that go w/ chronic/and-or/'latent' Lyme to family...
[such as elderly and forgetful dads,and know it all brothers]
... please if you are willing share experiences on what worked and what didn't w/ explaining the problems of Lyme and Co-infections.
They've heard the line that Lyme is easily taken care of w/ an antibiotic injection or two/or a dose or tow of Oral antibiotics.
Is there a way to help a forgetful elderly parent,or 'know it all' sibling to understand it just isn't that simple?
I dearly love my family... however... it is getting exasperating trying to explain why 'simple' sprains/strains/tendinitis ,
... respiratory bugs and so on...are constant and recurrent for me...and why I don't heal up quickly and easily. And why I am constantly exhausted.
My brother wouldn't do anything to help w/ anything w/o TxC and I constantly having to ask,repeatedly.
Bro's health isn't perfect,but he is the healthiest of us right now... dad has had a couple different kinds of cancer,and the chemo radiation left him very weak and off balance.
While I love to visit for a little while,they were here for over a week,and both TxC and I are exhausted...
If my dad could travel w/o my bro'.I'd ask that bro' not come back...I hate to hurt feelings but don't want myself or TxC to end up in the hospital...
Any experiences,y'all could share would be greatly appreciated... apologies...but I needed to vent and ask for input... Thanks!!!
Jus' Silverwolfi the weary and wary
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Please,any replies from experiences would be greatly appreciated...
Thank You !!!
From Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Have they seen "Under Our Skin"? That should help. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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massman
Unregistered
posted
It plays hide + seek better than anything in the universe.
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< Keebler and massman >>>>>,
Thanks for the ideas!!! We need to find a way to get a couple of copies of 'Under our Skin'...
Finances are tight as always,and we are trying to figure out how to pay yet another medical bill [always somethin' ya know...].
I want to watch 'Under our Skin' too, maybe it will help me better understand and explain, this great pretender, mysterious mimic-er that plays hide and seek w/ so many of us,and makes us so very very weary.
I truly appreciate the input!
Jus' Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Does your local support group, library or NetFlix have a copy of UOS to loan?
If you get one, I would not just loan it to anyone, but schedule "documentary time" - make sure food and water are taken care of so they can give it their attention.
Keep them in your sight to be sure they really watch it - and the bonus footage, too. That is very valuable.
And, for you, a bit of very dark chocolate for when the party's over. But, oh, if you also give them chocolate, the "love" chemical might come around for them. Eh, eh! -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I agree--I made my family sit down with me and watch Under Our Skin. It was worth the investment in the price of the DVD, to get their emotional support, even though I had to skip buying a supplement for a few weeks to get it.
I have great parents and a brother who love me and have always wanted to be supportive of me--they just didn't understand what Lyme is like, and I was so new to the whole thing, I couldn't explain to them very well.
The misunderstanding was causing me a lot of stress and anxiety.
If you have a strained relationship with people to begin with, it may not help a lot, but if you have well-meaning loved ones who are just lacking comprehension or information, it will help.
After we watched the video, both my parents told me they were glad I persisted for several months, insisting I had Lyme disease and looking for an LLMD, when my own doctor and others were telling me I didn't have Lyme.
They also offered to help me with a little money, even though I know they can't really afford it. Before that, they did not understand why it was so expensive to cure, especially thinking I just needed a cheap antibiotic to get over it.
Now they know why I have to drive out of state to a doctor who they think is shady because he doesn't take insurance, and why I literally could not find any local doctors who treat Lyme patients.
Under Our Skin is great for explaining the practical and emotional issues to family, and letting them see some Lyme patients who are really sick, so they can grasp that it is a serious disease.
The "bonus" interviews have some great stuff too, if the relatives will sit still that long.
I also got my dad to read "Cure Unknown." It has an excellent combined exlpanation of the science, the medical politics, and the emotional journey and long term struggles of Lyme patients.
My mom tried to read it but stopped after the first third or so. Either she probably got bogged down in the science part, or maybe it was too painful for her to be reading about another mother whose children were suffering worse than me with Lyme disease. She still learned something.
My brother said, dripping with sarcasm, "Ooooh, a movie about Lyme disease! That sounds exciting." He watched it anyway, and afterwards he was still rather skeptical about me having Lyme and about Lyme being the way it shows in the movie, but he loves and supports me anyway.
He admitted that the movie was better than he was expecting. And now he has at least half a clue when I try to talk to him about Lyme stuff.
He is more aware now, to notice if he hears about someone else having Lyme or a story related to Lyme. There is also a male Lyme patient in the movie, who my brother could identify with more than with us women.
Watching the video together with someone is a great opening for you to discuss the subject with them, and for them to ask you questions.
If a person already has a negative or hostile attitude toward you, a movie is not going to change it, but if they care but are just confused, it can help.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
<<<<< Keebler and Light' >>>>>,
Thanks for the tho'ts and input, dad and bro' live in a different state than we do, they were here for a visit.
They are in a big city, and if they are willing they could prolly find UOS in there area and borrow it from a library.
We are rather rural here,no Support groups local, nearest LLMD about 5 hours away etc.
I want to see if we can order a copy of the UOS,but have to wait on finances [unless the local library could obtain a copy for us?].
Light'At', I think If my brother would watch the movie,he might understand more,and could help my aged father understand a bit more why I get weary and overwhelmed so easily!!!
Thanks for the input!!!
Jus'Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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posted
I found this link for how to download Under Our Skin for free. I own the movie so I can't say if the download works or not. Sounds like it does.
posted
I think the DVD was a good idea. Family denial is natural and that (dvd) was a good way to break the ice. Unless the pain and fatigue are showing on our faces its hard for loved ones to understand what we are going through. Neurological diseases are that way and Lyme disease overlaps symptoms with many of those. No denial on this site though.
Good Luck on Being Heard,
Beachinit.
Posts: 448 | From Downeast Maine | Registered: Jul 2009
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