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AlienLove.com :: View topic - National Invisible Chronic Illness Awareness Week
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National Invisible Chronic Illness Awareness Week

 
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oscarskids
Bawajigaywin
Bawajigaywin


Joined: May 23, 2005
Posts: 2075
Location: NY

PostPosted: Wed Sep 02, 2009 7:42 am    Post subject: National Invisible Chronic Illness Awareness Week Reply with quote

This is a great site and for once I am promoting a national fill in the blank week. I do not have an Invisible Illness but my 12 year old daughter does. She was dx'ed with Lyme on June 9 2009 and now she has Chronic Lyme. She looks fine but is very ill, it is hard for anyone that is ill to have to explain 'yes I look fine but am not,but harder a child'

Things About My Invisible Illness You May Not Know
http://www.invisibleillnessweek.com/
We’ve all seen the list “20 things about me” “50 thing about me you didn’t know…” They can actually be interesting if you want to get to know the person better! We’ll we’ve got one I haven’t seen anywhere yet, “30 Things About My Invisible Illness You May Not Know.”

Just copy and paste it below and put it up on your blog, send it to your friends, paste in on Facebook (if it’s too long put it in your “notes” section.)
THEN… post a COMMENT BELOW with the link to where you posted it and we are going to choose 2 people to receive a prize Sept 5th, 2009.

Let’s spread the word about II Week this way and it’s a wonderful way to share a little bit about your life. And don’t forget to add the last paragraph for people know where to find us!

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:
2. I was diagnosed with it in the year:
3. But I had symptoms since:
4. The biggest adjustment I’ve had to make is:
5. Most people assume:
6. The hardest part about mornings are:
7. My favorite medical TV show is:
8. A gadget I couldn’t live without is:
9. The hardest part about nights are:
10. Each day I take __ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I:
12. If I had to choose between an invisible illness or visible I would choose:
13. Regarding working and career:
14. People would be surprised to know:
15. The hardest thing to accept about my new reality has been:
16. Something I never thought I could do with my illness that I did was:
17. The commercials about my illness:
18. Something I really miss doing since I was diagnosed is:
19. It was really hard to have to give up:
20. A new hobby I have taken up since my diagnosis is:
21. If I could have one day of feeling normal again I would:
22. My illness has taught me:
23. Want to know a secret? One thing people say that gets under my skin is:
24. But I love it when people:
25. My favorite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I’d like to tell them:
27. Something that has surprised me about living with an illness is:
28. The nicest thing someone did for me when I wasn’t feeling well was:
29. I’m involved with Invisible Illness Week because:
30. The fact that you read this list makes me feel:

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com
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Blue1moon
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PostPosted: Wed Sep 02, 2009 4:21 pm    Post subject: Reply with quote

Very interesting post, Oskie!
I plan to send it on.

It is hard to live with an invisible illness, I hope your daughter gets some improvement in her health very soon.

Many Blessings to you all
Blue
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oscarskids
Bawajigaywin
Bawajigaywin


Joined: May 23, 2005
Posts: 2075
Location: NY

PostPosted: Wed Sep 02, 2009 6:00 pm    Post subject: Reply with quote

Blue
it was sent to me the other day and I thought hummmmmm might as well send it on There are to many out there that suffer and no one knows about it for they look fine. Thanks on the good wishes for the young one she is now listed as chronic.....and on another antibiotic....not sure what we are going to do next the mds that will be able to help her dont take insurance and the visits are 950$$ / visit got to start saving!
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Blue1moon
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PostPosted: Thu Sep 03, 2009 12:41 am    Post subject: Reply with quote

oscarskids wrote:
Blue
it was sent to me the other day and I thought hummmmmm might as well send it on There are to many out there that suffer and no one knows about it for they look fine. Thanks on the good wishes for the young one she is now listed as chronic.....and on another antibiotic....not sure what we are going to do next the mds that will be able to help her dont take insurance and the visits are 950$$ / visit got to start saving!


Wow, that's outrageous, osky!
I thought the Boston proton doc was high, they estimated at $500-700 we might have to pay if not covered for that consult visit.
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FrogDaddy
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PostPosted: Thu Sep 03, 2009 8:05 am    Post subject: Reply with quote

Blue1moon wrote:
oscarskids wrote:
Blue
it was sent to me the other day and I thought hummmmmm might as well send it on There are to many out there that suffer and no one knows about it for they look fine. Thanks on the good wishes for the young one she is now listed as chronic.....and on another antibiotic....not sure what we are going to do next the mds that will be able to help her dont take insurance and the visits are 950$$ / visit got to start saving!


Wow, that's outrageous, osky!
I thought the Boston proton doc was high, they estimated at $500-700 we might have to pay if not covered for that consult visit.


You sure about that blue? ... I thought they told us 900 - 1200 for the hour. Eitherway, its outrageous whatever price these guys are charging.
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FrogDaddy
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PostPosted: Thu Sep 03, 2009 8:07 am    Post subject: Reply with quote

BTW Oskie, what is the treatment for Chronic Lyme?

Is that meds or is there more to it?
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oscarskids
Bawajigaywin
Bawajigaywin


Joined: May 23, 2005
Posts: 2075
Location: NY

PostPosted: Thu Sep 03, 2009 11:13 am    Post subject: Reply with quote

Quote:
BTW Oskie, what is the treatment for Chronic Lyme?

Is that meds or is there more to it?

Frog,
The 950.00 is only the visits not meds ...and the insurance co will not pick up the meds either since they follow the Infectious MDs protocal that state one is cured after 14-21 days of antibiotic s they most dont think that there is such a thing as chronic lymes.....but more are each day rethinking that there just might be.
Another md in conn is 750/visit it is nut
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FrogDaddy
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PostPosted: Thu Sep 03, 2009 8:31 pm    Post subject: Reply with quote

oscarskids wrote:
Quote:
BTW Oskie, what is the treatment for Chronic Lyme?

Is that meds or is there more to it?

Frog,
The 950.00 is only the visits not meds ...and the insurance co will not pick up the meds either since they follow the Infectious MDs protocal that state one is cured after 14-21 days of antibiotic s they most dont think that there is such a thing as chronic lymes.....but more are each day rethinking that there just might be.
Another md in conn is 750/visit it is nut


No Oskie ... you mis-understood my question.

What is the treatment for Chronic Lyme?
What does the 950.00 get you?
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oscarskids
Bawajigaywin
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PostPosted: Fri Sep 04, 2009 8:06 am    Post subject: Reply with quote

oh for the first 950. you get to meet the md, then have a physical and history , no meds just talk. and a script maybe when you are done. That visit is 1 1/2 hours long but all of the rest are not as long but the price is the same
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oscarskids
Bawajigaywin
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PostPosted: Fri Sep 04, 2009 8:32 am    Post subject: Reply with quote

Treat ment is antibiotics but there are two camps of mds
one states and belives that you are cured after 14-21 day course of antibiotics..
Some are but most are not . These Mds feel that there must be sometheing else wrong with you a major disease...for Lyme mimics many sever disease's.
The other camp feels you need many course of antibiotics to get and arrest the advancement of Lyme.
if you google Under Our Skin you can see many trailers for the movie...we have it ....and it is very informative.
So treatment is for flare ups and maybe diet change,exercise if you can but after watching the trailers most can not.......
Lyme never goes away. Just changes
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Blue1moon
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PostPosted: Sat Sep 05, 2009 12:37 am    Post subject: Reply with quote

Do you want to try some colloidal silver?
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