TOUCHED BY LYME: 30 things you don’t know about Lyme disease

29th August 2009

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You may have heard of lists like “20 things you don’t know about me” making the rounds of social networking sites like Facebook. Here’s a new twist, sponsored by the organizers of “Invisible Illness Awareness Week” (September 14-20, 2009). It’s a creative way to share your story, help spread the word about Lyme disease…and maybe even win a prize.

 

 

 

 

Here’s the deal: Paste the questionnaire below into the comment section at the bottom of this blog page and then complete your answers.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with:
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:

Next, go to this page on the Invisible Illness Week website and post a comment giving this link: http://www.lymedisease.org/news/touchedbylyme/187.html (Copy and paste that link into your comment, so they can find where your answers are posted.)

The IIW organization will choose two people who have completed and posted their questionnaire to receive a prize the week of Sept. 5, 2009.

In addition, I will compile the Lyme answers posted here into future blog posts.

 

Find out more about National Invisible Chronic Illness Awareness Week here.

Contact this blogger at dleland@lymedisease.org.

 

Related posts:

  1. TOUCHED BY LYME: A beginner’s guide to all things Lyme
  2. TOUCHED BY LYME: What to say to a person who’s chronically ill?
  3. TOUCHED BY LYME: Disbelieving Lyme disease
  4. TOUCHED BY LYME: When teenagers have Lyme disease
Comments

27 thoughts on “TOUCHED BY LYME: 30 things you don’t know about Lyme disease

  1. 30 Things About My Invisible Illness You May Not Know

    1. The illness I live with: Lyme disease
    2. I was diagnosed with it in the year: 1989
    3. But I had symptoms since: 1987
    4. The biggest adjustment I’ve had to make is:
    5. Most people assume: I'm healthy or a hypochondriac
    6. The hardest part about mornings are: mornings
    7. My favorite medical TV show is: House
    8. A gadget I couldn’t live without is: PC
    9. The hardest part about nights are: gettin to sleep
    10. Each day I take _12_ pills & vitamins. (No comments, please)
    11. Regarding alternative treatments I: I'm leary
    12. If I had to choose between an invisible illness or visible I would choose: visible
    13. Regarding working and career: I haven't worked since 93
    14. People would be surprised to know: the amount of pain i really feel almost constantly
    15. The hardest thing to accept about my new reality has been: trying to remember what I was like before lyme
    16. Something I never thought I could do with my illness that I did was: Graduate college
    17. The commercials about my illness: what commercials!!??
    18. Something I really miss doing since I was diagnosed is: Being me, making fun plans
    19. It was really hard to have to give up: doing things
    20. A new hobby I have taken up since my diagnosis is: researching lyme
    21. If I could have one day of feeling normal again I would: Spend the day playing actively with my kids
    22. My illness has taught me: not to take anything for granted
    23. Want to know a secret? One thing people say that gets under my skin is: they'll fix you
    24. But I love it when people: Ask about lyme and who what where whens and hows of it
    25. My favorite motto, scripture, quote that gets me through tough times is: this will not beat me
    26. When someone is diagnosed I’d like to tell them: That you are not alone
    27. Something that has surprised me about living with an illness is: how ignorant some people/organizations/govt's are
    28. The nicest thing someone did for me when I wasn’t feeling well was: my son brought me a pillow to ly down when he saw i was in pain, brought me to tears
    29. I’m involved with Invisible Illness Week because: the word needs to be spread about lyme and other invisible illnesses
    30. The fact that you read this list makes me feel: special because you took the time.

    Thank You
    Shannon J
    _______FIGHT LYME DISEASE
    http://www.ShazzArtisticVisions.com

  2. Very good blog …..
    But ? had more than 30 clinical Symptoms
    A small bit of my story here.

    Hate to be pessimistic , but am
    thinking something along the line of
    "Slammed by Lyme "

    As has been my experience , once and again … after a move from my Lyme Literate MD .
    Slowly relapsed after 8 months
    my personality did not resemble,
    Who I was after many years of appropriate treatment and self Supplementing.
    With alittle help from my LLMD .

    Bitten at 17 and not correctly diagnosed till after 32 yrs old.
    was bedridden . and wishing for my own demise.
    46 of 50 possible clinical symptoms.
    But not a solid ,High enough rating .
    On the Blood titers to qualify .

    But a simple cyst that had been on my arm,for Years .was biopsied and sure enough , there where the little buggers under my skin …. Hmmm.. must mention here that at that point in my life .

    Was only aware of Lyme found in people tissues after they were dead .
    Niether my doc nor i had found any living persons with positive tissue samples,that had been infected, as long as that. But could not address that .

    It was my life I was fighting for,
    When the life force and wits were available.

    The medical community where I moved to
    were infested with IDSA MDs,whom believe 2 weeks of antibiotics and your fine.
    Inspite of my exhaustive presentations to these doctors. Citing umpteen studies.

    My own med records as evidence, they
    remained with their Ostrich pose.
    (head in the sand).
    Years later and traveling throughout parts of this State, Stumbled on a LLMD
    thru Missouri Lyme net group.
    Am not the same person as before . Have
    seen personality changes and health
    waxing and waning in myself .
    That i thought no human should have to go through.In any 2 lifetimes.

    My hats off to the LLMDs and invisible illness Docs that have been able to survive this mayhem called our countries
    Medical care.And Survive and still be in practice.

    To those of you still fighting the good fight . . ..Can say with certainty.
    There is a point in treatment , If you can adhere to the treatment.
    That the glass becomes half full again,
    As opposed to it being half empty ,every
    minute of your life .

    Have personally been there and back .

    It was abenefit in the disease process,
    Pardon my blackness here , but with the brainfog and migraines and myalgias,
    That I was not able to keep considering
    self termination,but a very basic survival instinct seemed to kick in.
    as long as I understood other people
    were going through this too.

    (And the Med community was not being forthcoming,) I had hope .
    After years and years of hopelessness.

    Must add here that it is my firm belief,
    that Chronic Fatigue and Fibromyalgias
    Are symptoms not illness. Citing
    DR. Pimenthals Study on the same.
    At Cedar Sinai Hospital in LA,Calif.
    Of whom i was a study subject in the early 90`s

    Thank You
    Most Sincerely
    Jacqueline Cook
    Wife and Helpmate to
    In Loving Memory of Thomas Cook
    Without ,whom , I surely would have died.

  3. 30 Things About My Invisible Illness You May Not Know
    1. The illness I live with: Lyme disease
    2. I was diagnosed with it in the year:2005
    3. But I had symptoms since: my brain doesn't remember
    4. The biggest adjustment I’ve had to make is: Life as I knew it
    5. Most people assume:I'm making it up "because I look fine"
    6. The hardest part about mornings are:just like afternoons and evenings I have to wake up
    7. My favorite medical TV show is:The one I live in
    8. A gadget I couldn’t live without is:
    9. The hardest part about nights are:
    10. Each day I take 36 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: Ill let you know when I accept something
    16. Something I never thought I could do with my illness that I did was:
    17. The commercials about my illness:don't exist
    18. Something I really miss doing since I was diagnosed is: remembering
    19. It was really hard to have to give up: life as I knew it
    20. A new hobby I have taken up since my diagnosis is:sleeping
    21. If I could have one day of feeling normal again I would: be overjoyed
    22. My illness has taught me:strength
    23. Want to know a secret? One thing people say that gets under my skin is: oh but you look so good
    24. But I love it when people: look at me like I dont know what Im talking about, it makes me laugh
    25. My favorite motto, scripture, quote that gets me through tough times is: theres always tomorrow
    26. When someone is diagnosed I’d like to tell them: your not alone
    27. Something that has surprised me about living with an illness is: how much I cant do anymore
    28. The nicest thing someone did for me when I wasn’t feeling well was:believe me
    29. I’m involved with Invisible Illness Week because: Lyme needs to be recognized
    30. The fact that you read this list makes me feel: the energy from typing it was worth while

  4. 30 Things About My Invisible Illness You May Not Know

    1. The illness I live with: Lyme disease
    2. I was diagnosed with it in the year: 2009
    3. But I had symptoms since: 25 years ago
    4. The biggest adjustment I’ve had to make is: monitoring my diet, environment, energy output
    5. Most people assume: I am perfectly healthy
    6. The hardest part about mornings are: getting out of bed
    7. My favorite medical TV show is: don't watch 'em
    8. A gadget I couldn’t live without is: my sauna
    9. The hardest part about nights are: staying asleep
    10. Each day I take 50 vitamins. (No comments, please)
    11. Regarding alternative treatments I: do anything that can help me
    12. If I had to choose between an invisible illness or visible I would choose: being more visible. With an invisible illness, people don't take me seriously
    13. Regarding working and career: wish I had the energy for a career!
    14. People would be surprised to know: that I do so much for my health
    15. The hardest thing to accept about my new reality has been: most of my illness related problems are not new. However, I now have multiple chemical sensitivities on top of everything–this is difficult to accept.
    16. Something I never thought I could do with my illness that I did was: ??
    17. The commercials about my illness: there aren't any
    18. Something I really miss doing since I was diagnosed is: eating sweets, nuts, fruit
    19. It was really hard to have to give up: sweets, nuts, fruit, & countless other food items
    20. A new hobby I have taken up since my diagnosis is: obsessively researching about lyme
    21. If I could have one day of feeling normal again I would: do all the things I don't have the energy for now
    22. My illness has taught me: acceptance. I accept my limitations. I've stopped fighting against myself.
    23. Want to know a secret? One thing people say that gets under my skin is: that lyme is easily cured
    24. But I love it when people: understand me, offer empathy
    25. My favorite motto, scripture, quote that gets me through tough times is: The fact of impermanence. This too shall pass…
    26. When someone is diagnosed I’d like to tell them: don't worry, there is hope, there is help, there is support
    27. Something that has surprised me about living with an illness is: how I've found ways to manage my life fairly well
    28. The nicest thing someone did for me when I wasn’t feeling well was: offer comfort, friendship
    29. I’m involved with Invisible Illness Week because: I think it's important to make people more aware of Lyme.
    30. The fact that you read this list makes me feel: that somebody cares.

  5. 1. The illness I live with: supposedly Lyme

    2. I was diagnosed with it in the year: 2004

    3. But I had symptoms since: don't know.

    4. The biggest adjustment I’ve had to make is: letting go of pretty much all social life and regular work.

    5. Most people assume: I'm ok, and a little crazy.

    6. The hardest part about mornings are: waking up and getting energy.

    7. My favorite medical TV show is: Scrubs

    8. A gadget I couldn’t live without is: Ginsu knife set.

    9. The hardest part about nights are: anger spells.

    10. Each day I take __ pills & vitamins: X=about 30.

    11. Regarding alternative treatments I: wouldn't be here without them.

    12. If I had to choose between an invisible illness or visible I would choose: visible, as long as it were fixable.

    13. Regarding working and career: that's shot for now.

    14. People would be surprised to know: how much energy they have and take for granted compared to me.

    15. The hardest thing to accept about my new reality has been: to be grateful for what I have, rather than the limitations imposed.

    18. Something I really miss doing since I was diagnosed is: being in a rock band.

    20. A new hobby I have taken up since my diagnosis is: electronics repair.

    21. If I could have one day of feeling normal again I would: visit California.

    22. My illness has taught me: to take health and diet very, very seriously.

    23. Want to know a secret? One thing people say that gets under my skin is: "Pardon my French but…."

    24. But I love it when people: help animals.

    25. My favorite motto, scripture, quote that gets me through tough times is: it could always be worse.

    26. When someone is diagnosed I’d like to tell them: tread quickly, but carefully, in treatment.

    28. The nicest thing someone did for me when I wasn’t feeling well was: sorry, it's x-rated. :-)

  6. 30 Things About My Invisible Illness You May Not Know

    1. The illness I live with:
    Lyme Disease

    2. I was diagnosed with it in the year:
    2003

    3. But I had symptoms since: Not able to teach or do household chores, drive, read, do math, go for my morning walks, etc in Oct 2001. Fine one week and not the next.

    But, wondering now if systems I had since 1971 were lyme related. At least they did not stop me in my tracks and I was still able to do household chores, work, go to college, do yard work, etc.

    4. The biggest adjustment I’ve had to make is:

    The unreliability of my body and brain, learning to live within my limits and just do a little each day when able vs. over doing it and not being able to function for several days.

    Trying to live on SSI of almost $700 a month vs earning $7,000 a month.

    5. Most people assume:

    I am normal.

    6. The hardest part about mornings are:

    Not knowing if I will be able to get up, get dressed and be able to drive to the trailhead and go for a 10 min walk or if I will need to use the reclining power chair and go across the street to toilet my service dog. But, thankful I am able to do one or the other now.

    7. My favorite medical TV show is:

    I was watching Grey’s Anatomy but would not call that a medical TV show.

    Can’t handle the other medical TV shows such as mystery dx due to health being so low myself.

    8. A gadget I couldn’t live without is:

    Would my power chair, car, public transportation to transport my power chair be considered gadgets?

    I just know how much more difficult life was without them for years.

    Also my sun glasses and ear muffs.

    9. The hardest part about nights are:

    Nights are OK now since I started taking gabapentin, sleeping meds and glycine to help me sleep.

    10. Each day I take 30 pills & vitamins.

    11. Regarding alternative treatments I:

    Would water therapy be considered alternative therapy. I would do more if I had the funds.

    12. If I had to choose between an invisible illness or visible I would choose:

    I don’t even what to go there. I prefer health.

    13. Regarding working and career:

    This has been put on the back burner since Oct. 2001.

    Still trying to find something I can do within my health limits.

    14. People would be surprised to know:

    How difficult this condition can be.

    15. The hardest thing (s) to accept about my new reality has been:

    Traveling, the great outdoors, working, going to church/bible study, not being able to read a novel, having a newer reliable vehicle to transport my power chair. Not having a LLMD close by or able to travel to see a LLMD

    And not being able to just focus on the bottom line anymore but needing to communicate via the keyboard and still not be sure about what I am saying.

    16. Something I never thought I could do with my illness that I did was:

    I still have hope and have not set limits on what I will not be able to do.

    17. The commercials about my illness:

    There are no commercials about lyme disease.

    18. Something I really miss doing since I was diagnosed is:

    See question 15…

    19. It was really hard to have to give up:

    My independence.

    20. A new hobby I have taken up since my diagnosis is:

    I keep trying to think of something I can do but have yet achieved this.

    21. If I could have one day of feeling normal again I would:

    Visit a National Park with my grand son's and a friend.

    22. My illness has taught me:

    Hindsight will tell me what I have learned from this.

    23. Want to know a secret? One thing people say that gets under my skin is:

    Complaining when they have the cold or flu for a few days or complaining when they have to go to work.

    24. But I love it when people:

    Have a positive outlook and appreciate what they have.

    25. My favorite motto, scripture, quote that gets me through tough times is:

    No motto, scripture or quote. God just shows me someone who is doing much worse or that he is there for me or like today when I heard a pastor say he has a saying on his wall…yesterday ended last night.

    26. When someone is diagnosed I’d like to tell them:

    Congratulations on getting a dx as many suffer a long time before knowing why. And congratulations on educating yourself and finding a LLMD to help you.

    27. Something that has surprised me about living with an illness is:

    Before this illness I thought you went to the medical field to get a dx and get better. Since coming down with this illness I have learned that it is business first with the majority of the medical field and my health second ….if that.

    I was surprised when a specialist would suggest I go to Stanford to see a doc or have a mycoplasma test done to find answers, but the insurance would deny it.

    I also learned that not all labs are the same.

    And the majority of the medical field work out of a tool box provided by the insurance. A very small amount of doctor's will work outside of that box.

    We all have a lot to learn when it comes to things attacking the inside of the body.

    I also continue to battle the fear that comes with this and low self esteem and confidence.

    28. The nicest thing (s) someone did for me when I wasn’t feeling well was:

    Get me food, prepare food for me, do household chores, show acts of kindness, drive me to the doctor’s, help me with the infusion of abx via the PIC line when I was not able to do it myself, donated a power chair to me, donate a computer to me, donated a car to me, provide a service dog for me, pay for the repairs on my car, send me an encouraging card monthly…believe in me.

    29. I’m involved with Invisible Illness Week because:

    It is nice to not be isolated and know that others also can relate and to learn.

    I have missed it the past few years do to health. Hopefully, my vision and processing will be working this time.

    30. The fact that you read this list makes me feel:

    Heard.

  7. I appreciate the comments that have been posted, and am humbled anew but how big a burden so many people must bear. I hope we continue to get posts. I plan to incorporate these comments into a feature article. Best, Dorothy K Leland

  8. 1. The illness I live with: Lyme and other tick-borne infections
    2. I was diagnosed with it in the year: 2008
    3. But I had symptoms since: birth
    4. The biggest adjustment I’ve had to make is: to not volunteer to help do things that tax me physically
    5. Most people assume: Lyme plays itself out in a few weeks; sooner if you get a few days of antibiotics
    6. The hardest part about mornings are: first getting out of the bed
    7. My favorite medical TV show is: Mystery Diagnosis but I only see it infrequently because I don't have cable.
    8. A gadget I couldn’t live without is: my shower seat!
    9. The hardest part about nights are: getting to sleep around the pain and anxiety
    10. Each day I take 42 pills & vitamins.
    11. Regarding alternative treatments I: have not tried any
    12. If I had to choose between an invisible illness or visible I would choose: VISIBLE, one that SCREAMS I'm sick
    13. Regarding working and career: I can't work
    14. People would be surprised to know: how much pain I have and how often I am bedridden.
    15. The hardest thing to accept about my new reality has been: I can't do things I want to do or used to do.
    16. Something I never thought I could do with my illness that I did was: go to junior church camp as a counselor!
    17. The commercials about my illness: are non-existent.
    18. Something I really miss doing since I was diagnosed is: waking up, going through the day, going to bed… without having to stop and take a bunch of pills.
    19. It was really hard to have to give up: homeschooling
    20. A new hobby I have taken up since my diagnosis is: sleeping
    21. If I could have one day of feeling normal again I would: would not fully know it, as I've been ill since birth.
    22. My illness has taught me: I have to take care of myself in order to take care of my family. Also, how to go to a doctor and talk to him about ME.
    23. Want to know a secret? One thing people say that gets under my skin is: it must 'all be in my head' since Lyme is 'cured' by a few days of antibiotics. My doctor isn't looking to cure me. Just get me into remission.
    24. But I love it when people: ask how I'm doing and actually want to know the truth.
    25. My favorite motto, scripture, quote that gets me through tough times is: God will not put on us more than we can handle. Jesus will help me through.
    26. When someone is diagnosed I’d like to tell them: as much as I can about what to expect in the coming months, and that yes, it WILL get better… eventually.
    27. Something that has surprised me about living with an illness is: how totally it affects every little thing you OR your family do.
    28. The nicest thing someone did for me when I wasn’t feeling well was: prayed for me and told me they were.
    29. I’m involved with Invisible Illness Week because: Most of my family (parents, brothers, children, myself)and some dear friends of mine all have one or more invisible illnesses.
    30. The fact that you read this list makes me feel: blessed.

  9. 1. The illness I live with is: Chronic Lyme Disease

    2. I was diagnosed with it in the year: 2009

    3. But I had symptoms since: 2004

    4. The biggest adjustment I’ve had to make is: Living my life around daily fatigue and pain

    5. Most people assume: Now that I am taking Antibiotics I am cured and doing great!

    6. The hardest part about mornings are: Moving…the all over body pain until my medication kicks in to relieve it.

    7. My favorite medical TV show is: Mental…I just think Jack is adorable and I love his accent!

    8. A gadget I couldn’t live without is: rubber jar pad opener!! I can't open even a water bottle without it!!

    9. The hardest part about nights are: The pain in my Legs and body. At times not wanting even a gentle touch of my husbands hand on me…it can be too painful to enjoy!

    10. Each day I take 53 pills & vitamins.

    11. Regarding alternative treatments I: am discovering methods unorthodox to the way I was raised

    12. If I had to choose between an invisible illness or visible I would choose: No illness at all! I would not wish this disease or any on anyone!

    13. Regarding working and career: I have had to stop…fatigue and cognitive issues ended my career!

    14. People would be surprised to know: How hard it is to just get dressed and ready to great each new day!

    15. The hardest thing to accept about my new reality has been: I can't push my body like I used to

    16. Something I never thought I could do with my illness that I did was: Be an Advocate…talk to people I don't even know and try to educate the public about the dangers of ticks!!

    17. The commercials about my illness: I haven't seen ONE!! I don't believe there are any!!

    18. Something I really miss doing since I was diagnosed is: swimming when the sun is out…I have to stay out of the sunlight due to some of my medications!

    19. It was really hard to have to give up: Staying away from Dairy products and not eating so many carbs and sugars! I Love my breads and pastas!!

    20. A new hobby I have taken up since my diagnosis is: blogging, writing a lot and working on support groups to reach out to others afflicted with Lyme Disease and Parkinson's Disease.

    21. If I could have one day of feeling normal again I would: go to Hawaii, walk on the beach hand in hand with my hubby in the sun!

    22. My illness has taught me: How important my faith is…I draw so much strength and comfort knowing my Savior is by my side on this journey. Each day is precious even if I am sick! I am still here and able to make a difference with the life I have!

    23. Want to know a secret? One thing people say that gets under my skin is: "Your on antibiotics that's wonderful! You look great! I am so glad your better!" I take 2100mg a day of antibiotic and do everything I can to prevent kidney and liver issues

    24. But I love it when people: are really interested in learning about Lyme disease and ask what they can do to help advocate for us!

    25. My favorite motto, scripture, quote that gets me through tough times is: Lyme Disease does not define me…It does: however make life a challenge at times! There are times I am depleted, but I am not defeated!! I don't walk this journey alone…It is through the challenges I face that continue to keep not only my life interesting but my faith in Christ at the forefront of it all!

    26. When someone is diagnosed I’d like to tell them: Learn all you can about this disease. Don't let fear get in the way of a fighting spirit!

    27. Something that has surprised me about living with an illness is: That the majority of health professionals are ignorant about it…they are uneducated as to what tests to run! They have no idea what treatment protocols to utilize to defeat it! That there are too few Lyme specialists to help those of us fighting this disease!

    28. The nicest thing someone did for me when I wasn’t feeling well was: I received a pizza for lunch! It was ordered all the way from Tennessee!!! I will never forget this…I was shocked someone so far away a friend I met on an internet patient site would do something so kind and creative!! Just to let me know she cared that I was sick!

    29. I’m involved with Invisible Illness Week because: There are too many "hidden" illnesses that the world needs to become aware of!

    30. The fact that you read this list makes me feel: Hopeful and extremely appreciative!!

  10. 30 Things About My Invisible Illness You May Not Know

    1. The illness I live with: Lyme disease–bartonella, babesia and erlichiosis
    2. I was diagnosed with it in the year: 2002
    3. But I had symptoms since:1979
    4. The biggest adjustment I’ve had to make is: remembering to rest and to plan a longer timetable for my goals
    5. Most people assume: I am healthy
    6. The hardest part about mornings are: just getting out of bed
    7. My favorite medical TV show is: House–ever notice how often they think the patient has Lyme??? LOL
    8. A gadget I couldn’t live without is: my computer–I can verbalize via my keyboard in a more articulate way than with my actual spoken words and voice
    9. The hardest part about nights are: believe it or not it is falling asleep and joint pain
    10. Each day I take 8++ pills & vitamins. (No comments, please)
    11. Regarding alternative treatments I: think some are hoaxes
    12. If I had to choose between an invisible illness or visible I would choose: neither
    13. Regarding working and career: I would love to have one!!
    14. People would be surprised to know: That I celebrate the blessings of having Lyme has given me..
    15. The hardest thing to accept about my new reality has been: that my children are sick
    16. Something I never thought I could do with my illness that I did was: gain tons of weight
    17. The commercials about my illness: do not exist
    18. Something I really miss doing since I was diagnosed is: not being tired
    19. It was really hard to have to give up: booze…LOL
    20. A new hobby I have taken up since my diagnosis is: Knitting
    21. If I could have one day of feeling normal again I would: want every day to be like that
    22. My illness has taught me: to celebrate life, hug, cuddle and snuggle the ones you love
    23. Want to know a secret? One thing people say that gets under my skin is: the North Carolina Department of Health
    24. But I love it when people: try to understand
    25. My favorite motto, scripture, quote that gets me through tough times is: "Low though I walk through the valley of the shadow of death, I will fear no evil for thy rod and staff, they comfort me."
    26. When someone is diagnosed I’d like to tell them: get treated and report it to the local health departments..research and ask for longer antibiotic treatments than the regular protocol
    27. Something that has surprised me about living with an illness is: That I can never donate blood…
    28. The nicest thing someone did for me when I wasn’t feeling well was: come up to my room and sit on my bed with me
    29. I’m involved with Invisible Illness Week because: There are more diseases out there that are ignored yet impact people we love yet the CDC is working (LOL) so diligently on Swine Flu and it does not exist here
    30. The fact that you read this list makes me feel: splendid

  11. 1. The illness I live with: Chronic Lyme Disease
    2. I was diagnosed with it in the year: 2007
    3. But I had symptoms since: 1980s
    4. The biggest adjustment I’ve had to make is: Not having energy to do things and getting sick from treatment.
    5. Most people assume: That Lyme disease isn't a true disability. Some think I can use positive thinking to get rid of it.
    6. The hardest part about mornings are: I like mornings. I have my best energy the first four hours of every day.
    7. My favorite medical TV show is: Gray's Anatomy and the new show, Hawthorne. I also like Medical Mysteries.
    8. A gadget I couldn’t live without is: My juicer.
    9. The hardest part about nights are: Being so exhausted that the thought of preparing dinner is sometimes too much.
    10. Each day I take 16 to 20 pills & vitamins. (No comments, please)
    11. Regarding alternative treatments I: think some of them are very helpful. My insurance doesn't cover most of them, so I can't get as much as I'd like to get.
    12. If I had to choose between an invisible illness or visible I would choose: Visible.
    13. Regarding working and career: I can't do the work I did for 15 years previously, which was technical writing.
    14. People would be surprised to know: that I'm sick.
    15. The hardest thing to accept about my new reality has been: Not being able to do everything I used to do or want to do.
    16. Something I never thought I could do with my illness that I did was: Graduate from Interfaith seminary.
    17. The commercials about my illness: There are none. Lyme disease is denied in mainstream medicine.
    18. Something I really miss doing since I was diagnosed is: Taking strenuous dance classes.
    19. It was really hard to have to give up: Doing things I want to do.
    20. A new hobby I have taken up since my diagnosis is: More reading.
    21. If I could have one day of feeling normal again I would: Go hiking with my husband.
    22. My illness has taught me: To treat myself kindly, respect the choices each person makes about treatment, accept my limitations and celebrate my ability to do some things.
    23. Want to know a secret? One thing people say that gets under my skin is: That I could have control over how I feel.
    24. But I love it when people: Are understanding and know about Lyme disease and how devastating it can be.
    25. My favorite motto, scripture, quote that gets me through tough times is: All things work together for good.
    26. When someone is diagnosed I’d like to tell them: It's o.k. You can do this and you can feel better.
    27. Something that has surprised me about living with an illness is: There are times I feel well, as if I don't have it.
    28. The nicest thing someone did for me when I wasn’t feeling well was: My husband will cook dinners and allow me to rest.
    29. I’m involved with Invisible Illness Week because: It is important to acknowledge that people can be very sick even though their illness isn't "obvious" to others.
    30. The fact that you read this list makes me feel: Listened to and heard.

  12. 1. The illness I live with: Neuroborreliosis
    2. I was diagnosed with it in the year: 2006
    3. But I had symptoms since: Mildly 10 since '96 – Explosive in '06
    4. The biggest adjustment I’ve had to make is: I wasn't the only one in my family – 5 others have it as well and it all is very unbelievable, all have different symptoms, my son and I have been the worst.
    5. Most people assume: Lyme is hard to get and easy to treat -~WRONG!
    6. The hardest part about mornings are: When I open my eyes the first thing I think about is this illness, like it is the movie "Ground Hog Day"
    7. My favorite medical TV show is: House – no longer watch any medical shows
    8. A gadget I couldn’t live without is: Laptop
    9. The hardest part about nights are: That tomorrow I will likely relive more pain and agony again
    10. Each day I take 20 or so pills & vitamins. (No comments, please)
    11. Regarding alternative treatments I: Have tried a few without success
    12. If I had to choose between an invisible illness or visible I would choose: Invisble, but not Lyme Disease
    13. Regarding working and career: Disabled
    14. People would be surprised to know: I have an educational website and have youtube video's and am very active online in educating people about TB diseases
    15. The hardest thing to accept about my new reality has been: That the treatments can be worse than the disease itself
    16. Something I never thought I could do with my illness that I did was: Cry so much
    17. The commercials about my illness: What commercials?
    18. Something I really miss doing since I was diagnosed is: Living
    19. It was really hard to have to give up: My life prior to this
    20. A new hobby I have taken up since my diagnosis is: Educating online at forums
    21. If I could have one day of feeling normal again I would: Thank God on my knees over and over and ask for more
    22. My illness has taught me: To never take anything for granite, to trust God more than ever, to have compassion for all of the sick people in the world
    23. Want to know a secret? One thing people say that gets under my skin is: Tell me to accept this – Never!
    24. But I love it when people: Say I will beat it and be healthy again
    25. My favorite motto, scripture, quote that gets me through tough times is: 2 Kings 20:5 I have heard your prayer and seen your tears; I will heal you.
    26. When someone is diagnosed I’d like to tell them: Be strong the ride is rough to wellness
    27. Something that has surprised me about living with an illness is: How what matters in life now is very different from what I use to think. So mainly – my thinking.
    28. The nicest thing someone did for me when I wasn’t feeling well was: Pray for me; Drive me 200 miles to a doctor; give me a hug; sent a card
    29. I’m involved with Invisible Illness Week because: To educate
    30. The fact that you read this list makes me feel: Like you are actually interested

  13. 30 Things About My Invisible Illness You May Not Know
    1. The illness I live with: Lyme disease
    2. I was diagnosed with it in the year: 2004
    3. But I had symptoms since: 5 -6 years old
    4. The biggest adjustment I’ve had to make is: None I have lived with… it most of my life – I guess giving in to being tired and rested when my body refuses to go on.
    5. Most people assume: I look fine therefore nothing is wrong with me.
    6. The hardest part about mornings are: Getting the energy to get out of bed
    7. My favorite medical TV show is: Mental
    8. A gadget I couldn’t live without is: Heating pad, back massager
    9. The hardest part about nights are: Walking the dog, eating, showering, getting to sleep
    10. Each day I take _25_ pills & vitamins and 2 shots and IV & pain patch. (No comments, please)
    11. Regarding alternative treatments I: have tried everything that has come my way, while going broke at the same time
    12. If I had to choose between an invisible illness or visible I would choose: 2 Broken legs 2 broken arms cause they heal and doctors know how to treat them – and the insurance will not deny my coverage.
    13. Regarding working and career: I am a controller – I devote whatever energy I have to work
    14. People would be surprised to know: How bad this disease can be and how little support is given to the ill person
    15. The hardest thing to accept about my new reality has been: No support from my family
    16. Something I never thought I could do with my illness that I did was: it went dormant for 4 years and I played tennis 3-4 times a week and was at the gym daily taking 2-3 classes in a row. Lot’s of energy, no pain. I was amazed that people actually live like that daily can still complain about how hard their life is…. Read More
    17. The commercials about my illness: NONE
    18. Something I really miss doing since I was diagnosed is: everything – being me!!!!
    19. It was really hard to have to give up: everything – no children for sure
    20. A new hobby I have taken up since my diagnosis is: No energy for new hobbies
    21. If I could have one day of feeling normal again I would: play tennis, climb a mountain, go swimming, run with the dog, spend every waking hour on my feet doing something
    22. My illness has taught me: life is good because it is not cancer
    23. Want to know a secret? One thing people say that gets under my skin is: You look great, maybe you should change doctors, what you are doing is not working – BUT they will not take time to educate themselves about Lyme…. Read More
    24. But I love it when people: Call and say they are being over dinner, or at the store and ask if I need anything.
    25. My favorite motto, scripture, quote that gets me through tough times is: life is good because it is not cancer
    26. When someone is diagnosed I’d like to tell them: The experience is different for everyone – be strong
    27. Something that has surprised me about living with an illness is: How my family does not support me
    28. The nicest thing someone did for me when I wasn’t feeling well was: Brought me flowers and dinner
    29. I’m involved with Invisible Illness Week because: More folks need to know how they affect the sick folks by not acknowledging their illness.
    30. The fact that you read this list makes me feel: the actions will speak louder then words. – Time will tell.

  14. 30 Things About My Invisible Illness You May Not Know

    1. The illness I live with: Late Stage (Chronic) Lyme Disease
    2. I was diagnosed with it in the year: 2008
    3. But I had symptoms since: 1988
    4. The biggest adjustment I’ve had to make is:decreasing my activity and my expectations, mind willing,body weak.
    5. Most people assume: I am not really sick.
    6. The hardest part about mornings are: getting moving, everything always stiff and sore,also very groggy when first up.
    7. My favorite medical TV show is: House
    8. A gadget I couldn’t live without is: My computer
    9. The hardest part about nights are: often have difficulty staying asleep.
    10. Each day I take 38(+/-) pills & vitamins.
    11. Regarding alternative treatments I: would be dead without them, conventional medicine almost killed me.
    12. If I had to choose between an invisible illness or visible I would choose: a visable illness, few believe it unless they can see it.
    13. Regarding working and career: Mine is over, I struggled to stay active as an RN for years while not feeling well, in 2007 I couldn't function at all and by mid 2008 had to quit for good, now I am disabled.
    14. People would be surprised to know:How much pain I really have, I do not dwell on it.
    15. The hardest thing to accept about my new reality has been: this possibly could have been avoided if diagnosed sooner.
    16. Something I never thought I could do with my illness that I did was: Start writing a blog to vent my feelings.
    17. The commercials about my illness: do not exist.
    18. Something I really miss doing since I was diagnosed is: ice skating, remodeling projects,spontaneous travel.
    19. It was really hard to have to give up: Working
    20. A new hobby I have taken up since my diagnosis is: none new,have tried to get back into reading books, sometimes still have problems with comprehension.
    21. If I could have one day of feeling normal again I would: Install a new floor in my kitchen.
    22. My illness has taught me: Take one day at a time
    23. Want to know a secret? One thing people say that gets under my skin is: But you look so good!
    24. But I love it when people: Let me vent.
    25. My favorite motto, scripture, quote that gets me through tough times is: This too shall pass.
    26. When someone is diagnosed I’d like to tell them: Please get proper treatment, research and don't believe everything the conventional docs tell you.
    27. Something that has surprised me about living with an illness is: how much it takes over your life.
    28. The nicest thing someone did for me when I wasn’t feeling well was: bring over a dinner.
    29. I’m involved with Invisible Illness Week because: more attention needs to be given to those of us affected. We are not lazy, would give anything to be well. We need support, not ridicule.
    30. The fact that you read this list makes me feel:Hopeful.

  15. 30 Things About My Invisible Illness You May Not Know

    1. The illness I live with: LYME, MYCOPLASMA, BABESIA, BARTONELLA
    2. I was diagnosed with it in the year:2006
    3. But I had symptoms since: Off and on for years….diagnosed with fibromyalgia……symptoms really took off in oct 2006
    4. The biggest adjustment I’ve had to make is: accepting that i have a chronic illness and life may never be the same
    5. Most people assume: i'm fine or a hypochondriac
    6. The hardest part about mornings are: facing the day
    7. My favorite medical TV show is: mystery diagnosis, untold stories in the ER
    8. A gadget I couldn’t live without is: My computer
    9. The hardest part about nights are: staying asleep
    10. Each day I take 25+__ pills & vitamins. (No comments, please)
    11. Regarding alternative treatments I: will do what ever i have too, firmly believe in them
    12. If I had to choose between an invisible illness or visible I would choose: visible…..
    13. Regarding working and career: it's been difficult as a nurse……..had to go out due to brain fog.looking for office work now!
    14. People would be surprised to know: i'm embarrassed by my illness
    15. The hardest thing to accept about my new reality has been: how much it has stripped away my life and my health and that i may never get it back and not being there for my sons
    16. Something I never thought I could do with my illness that I did was: live with it this long
    17. The commercials about my illness: Don't exist
    18. Something I really miss doing since I was diagnosed is: exercising, having a glass of wine, drinking a real cup of coffee
    19. It was really hard to have to give up: my independence
    20. A new hobby I have taken up since my diagnosis is: same as alot of others, endlessly searching the computer for answers
    21. If I could have one day of feeling normal again I would: be in the gym, ot with friends, and having fun with my kids
    22. My illness has taught me: I am not in control
    23. Want to know a secret? One thing people say that gets under my skin is: you look fine
    24. But I love it when people: act like they care and try to understand
    25. My favorite motto, scripture, quote that gets me through tough times is: you are stronger than you know
    26. When someone is diagnosed I’d like to tell them: do what ever you have to , to find a LLMD who believes you
    27. Something that has surprised me about living with an illness is: I'm still here
    28. The nicest thing someone did for me when I wasn’t feeling well was: a coworker Gave me time while i've been out of work
    29. I’m involved with Invisible Illness Week because: Because of the lack of awareness in general about the devastating effects of this disease on peoples lives……and to make other's aware this could be them.
    30. The fact that you read this list makes me feel: like one more person has some awareness of this devastating disease.

  16. 1. The illness I live with: Lyme disease

    2. I was diagnosed with it in the year: 2005

    3. But I had symptoms since: 2003/2004

    4. The biggest adjustment I’ve had to make is: Lack of a social life, which was rampant before the illness.

    5. Most people assume: That I am getting better, which couldn't be more false.

    6. The hardest part about mornings are: Not much to complain about there. It's not like I actually woke up from anything anyway.

    7. My favorite medical TV show is: I don't really watch any, but perhaps Scrubs could be considered a medical show.

    8. A gadget I couldn’t live without is: Computer.

    9. The hardest part about nights are: Wanting to stay up, but not having the energy to do so.

    10. Each day I take an infinite number of pills & vitamins. (I don't keep track of it.)

    11. Regarding alternative treatments I: don't mind it, nor do I embrace it. I don't have opinions to many topics these days.

    12. If I had to choose between an invisible illness or visible I would choose: Visible.

    13. Regarding working and career: I plan to be a mechanical engineer after college, but current conditions are impeding my education, gradually increasing the distance between me and that vision.

    14. People would be surprised to know: I barely talk to people anymore, even friends, which is a sharp contrast to my former life.

    15. The hardest thing to accept about my new reality has been: My dampened concentration and ability to take in information.

    16. Something I never thought I could do with my illness that I did was: Again continue boy scouts.

    17. The commercials about my illness: My english tutor is wonderful, and got her friend – a journalist for a local newspaper – to write a short story about me.

    18. Something I really miss doing since I was diagnosed is: Dirt jumping.

    19. It was really hard to have to give up: Primarily dirt jumping, but also hockey and some soccer.

    20. A new hobby I have taken up since my diagnosis is: Video gaming and video game programming.

    21. If I could have one day of feeling normal again I would: Bike around, play some hockey, and go on a date.

    22. My illness has taught me: Anything can be endured if one has perseverance.

    23. Want to know a secret? One thing people say that gets under my skin is: I can't think of anything that bothers me off the top of my head. Then again, that could just be my crap memory kicking in.

    24. But I love it when people: No comment.

    25. My favorite motto, scripture, quote that gets me through tough times is: Not a problem.

    26. When someone is diagnosed I’d like to tell them: Pray it didn't affect your head.

    27. Something that has surprised me about living with an illness is: how uninformed the vast majority of the public is.

    28. The nicest thing someone did for me when I wasn’t feeling well was: Can't remember anything.

    29. I’m involved with Invisible Illness Week because: My mother apprised me of it.

    30. The fact that you read this list makes me feel: Appreciative, mainly for the fact that the word is getting out there.

  17. 1. The illness I live with: Lyme Disease and tick-borne co-infections.

    2. I was diagnosed with it in the year:
    2008

    3. But I had symptoms since: 2005, probably before but we tend to blame "not feeling right" on stress and working to hard.

    4. The biggest adjustment I’ve had to make is: Losing who I was.

    5. Most people assume: I am healthy and happy.

    6. The hardest part about mornings are: Wondering what this new day will bring. What kind of pain will I have, what symptoms will arise.

    7. My favorite medical TV show is: I do not watch medical shows, I have enough medical drama in my life.

    8. A gadget I couldn’t live without is: My computer, it keeps me in touch with what is going on.

    9. The hardest part about nights are: Sleeping and dealing with the pain.

    10. Each day I take 15+ pills & vitamins.

    11. Regarding alternative treatments I: Believe in anything that helps with this disease or any other. I am currently using alternative measures.

    12. If I had to choose between an invisible illness or visible I would choose: Neither, even though a visible illness is heard. I would choose health.

    13. Regarding working and career: I am no longer able to work and had to kiss my career goodbye. A terrible day…

    14. People would be surprised to know: You can "look good" and still be sick.

    15. The hardest thing to accept about my new reality has been: The lose of myself, my limitations. How my mind and body cannot function like it use to.

    16. Something I never thought I could do with my illness that I did was: Cry so much….for it is so out of character for me.

    17. The commercials about my illness: Well, I have never seen one and don't think there is one….What a DISGRACE!

    18. Something I really miss doing since I was diagnosed is: Having good times. Being able to do things without having to worry "How I feel".

    19. It was really hard to have to give up: My life as I knew it.

    20. A new hobby I have taken up since my diagnosis is: Researching about Lyme and trying to find ways to help fight this awful disease, for myself and for others.

    21. If I could have one day of feeling normal again I would: Be overjoyed, just to find some peace. Then cry to have to give it up.

    22. My illness has taught me: Strength and to appreciate good health.

    23. Want to know a secret? One thing people say that gets under my skin is: "But You Look Great!" I tell them, Look Inside!

    24. But I love it when people: Truly try to understand.

    25. My favorite motto, scripture, quote that gets me through tough times is: "It is what it is"……

    26. When someone is diagnosed I’d like to tell them: Listen to your body, believe in yourself and research all that you can. Never give up on the journey to wellness.

    27. Something that has surprised me about living with an illness is: Having to learn and deal with the political nonsense you encounter fighting this disease. How in a country like ours, with people sick and dying, this illness is allowed to be "INVISIBLE"!

    28. The nicest thing someone did for me when I wasn’t feeling well was: Believe me. Help me at times when it was really necessary with no words having to be said…

    29. I’m involved with Invisible Illness Week because: I want to raise awareness and to shout "THERE SHOULD NEVER BE AN INVISIBLE ILLNESS"!!! This disease is happening, We are here and we are suffering…

    30. The fact that you read this list makes me feel: That some of our voices are heard…Thank You!

  18. 1. The illness I live with: Lyme disease
    2. I was diagnosed with it in the year: 2008
    3. But I had symptoms since: 1999
    4. The biggest adjustment I’ve had to make is: not working
    5. Most people assume: I'm lazy
    6. The hardest part about mornings are: The pain in my body
    7. My favorite medical TV show is: these are way to scary
    8. A gadget I couldn’t live without is: my computer
    9. The hardest part about nights are: I'm not tired
    10. Each day I take 80 pills & vitamins. (No comments, please)
    11. Regarding alternative treatments I: am thankful my doctor is open to them
    12. If I had to choose between an invisible illness or visible I would choose: visible
    13. Regarding working and career: I'm doing what I can
    14. People would be surprised to know: how effected I am by Lyme each day
    15. The hardest thing to accept about my new reality has been: how small my world has become
    16. Something I never thought I could do with my illness that I did was: help others
    17. The commercials about my illness: non existent
    18. Something I really miss doing since I was diagnosed is: being active
    19. It was really hard to have to give up: everything
    20. A new hobby I have taken up since my diagnosis is: blogging
    21. If I could have one day of feeling normal again I would: Go climbing or skiing with my husband
    22. My illness has taught me: what is really important
    23. Want to know a secret? One thing people say that gets under my skin is: You are so luck, you can eat anything without gaining an ounce.
    24. But I love it when people: visit me
    25. My favorite motto, scripture, quote that gets me through tough times is: when life gives you lyme, make lymenaide
    26. When someone is diagnosed I’d like to tell them: educate yourself and join support groups
    27. Something that has surprised me about living with an illness is: how invisible you become
    28. The nicest thing someone did for me when I wasn’t feeling well was: my laundry and cleaning
    29. I’m involved with Invisible Illness Week because: It hurts to suffer silently
    30. The fact that you read this list makes me feel: acknowledged

  19. 1. The illness I live with: Lyme Disease, etc.

    2. I was diagnosed with it in the year: 2009

    3. But I had symptoms since: 1986

    4. The biggest adjustment I’ve had to make is: Accepting and even asking for help with normal day to day things.

    5. Most people assume: I'm perfectly fine.

    6. The hardest part about mornings are: Thinking of all the things I should do today but will be too fatigued to do by the time I get home from work.

    7. My favorite medical TV show is: Mystery Diagnosis

    8. A gadget I couldn’t live without is: My medicine timer & microwaveable heating pads.

    9. The hardest part about nights are: Falling asleep

    10. Each day I take 35+ pills & vitamins. (No comments, please)

    11. Regarding alternative treatments I: am ALL for it!

    12. If I had to choose between an invisible illness or visible I would choose: I often like that people can’t tell I’m sick. But most of the time I despise the fact that they can’t tell I’m sick. I do think a visible illness would be easier for others to accept and not shrug off as an attempt at attention seeking.

    13. Regarding working and career: Thank goodness I have an understanding boss and a job that is not physically demanding.

    14. People would be surprised to know: just how sick I've truly been… and for how long.

    15. The hardest thing to accept about my new reality has been: Being unable to do things I could do before; often things as simple as making dinner & doing laundry, not to mention the fun things.

    16. Something I never thought I could do with my illness that I did was: Learn from it, help others like me and have so much compassion for others.

    17. The commercials about my illness: are non-existent

    18. Something I really miss doing since I was diagnosed is: surfing, not requiring so much rest and so many pills.

    19. It was really hard to have to give up: my independence and self-reliance.

    20. A new hobby I have taken up since my diagnosis is: Crying, just kidding. No new hobbies but LOTS more reading and research.

    21. If I could have one day of feeling normal again I would: Take my dogs to the beach, surf, and then head to Magic Mountain . Spend the evening with my love and my favorite friends and stay up really late.

    22. My illness has taught me: Compassion, patience, and that you MUST advocate for yourself.

    23. Want to know a secret? One thing people say that gets under my skin is: "well, it could be worse" as if I don't already know that and as if that makes my pain/suffering go away.

    24. But I love it when people: Ask, and genuinely want to know, about my illness or how I've been feeling

    25. My favorite motto, scripture, quote that gets me through tough times is: I am not my illness, it does not define who I am.

    26. When someone is diagnosed I’d like to tell them: You're not alone and it WILL get better. Research, research, research! Now fasten your seatbelt and hang on for a wild ride! I’ll be right here in the seat next to you holding your hand.

    27. Something that has surprised me about living with an illness is: The way others get uncomfortable at the mere mention of it.

    28. The nicest thing someone did for me when I wasn’t feeling well was: Hug me, hold me, BELIEVE me and tell me they would be there for me no matter what.

    29. I’m involved with Invisible Illness Week because: others (especially doctors!) should be aware that we are not lazy hypochondriacs seeking attention. This wretched illness is no joke! It is very real.

    30. The fact that you read this list makes me feel: like someone cares and wants to know more.

  20. 30 Things About My Invisible Illness You May Not Know

    1. The illness I live with: Master's Disease a.k.a. Lyme
    2. I was diagnosed with it in the year: 2007
    3. But I had symptoms since: 4 Yrs old
    4. The biggest adjustment I’ve had to make is: Not being able to walk/stand for very long
    5. Most people assume: I am nuts
    6. The hardest part about mornings are: Moving
    7. My favorite medical TV show is: Not one
    8. A gadget I couldn’t live without is: Pill splitter
    9. The hardest part about nights are: Sometimes staying asleep and muscle twitches
    10. Each day I take 25 pills & vitamins. (No comments, please)
    11. Regarding alternative treatments I: Having better luck than with abx for 2 years
    12. If I had to choose between an invisible illness or visible I would choose: Visable would help others see, but either for me is awful.
    13. Regarding working and career: Thank God for my desk job!
    14. People would be surprised to know: I cant focus more than a few minutes.
    15. The hardest thing to accept about my new reality has been: Losing my brain and memory.
    16. Something I never thought I could do with my illness that I did was: Find compassion for people who don't look sick.
    17. The commercials about my illness: Don't remember but they're probably messed up, thanks to the IDSA.
    18. Something I really miss doing since I was diagnosed is: Shopping
    19. It was really hard to have to give up: Not depending on others.
    20. A new hobby I have taken up since my diagnosis is: HMMMM Hobby? What's that?
    21. If I could have one day of feeling normal again I would: Shop and read and go walking.
    22. My illness has taught me: Too much about society putting so much faith in conventional medicine when a bacteria has apparently outsmarted them.
    23. Want to know a secret? One thing people say that gets under my skin is: "The IDSA says your disease doesn't even exist, it's a psychological thing you've got."
    24. But I love it when people: Want to know about Lyme disease cause, honey, I will tell them!
    25. My favorite motto, scripture, quote that gets me through tough times is: The Lord's Prayer and "Great Spirits have always encountered violent opposition from mediocre minds." Einstein
    26. When someone is diagnosed I’d like to tell them: You will get better.
    27. Something that has surprised me about living with an illness is: I hate needing help but my husband has been my Rock.
    28. The nicest thing someone did for me when I wasn’t feeling well was: Just quietly looking out for me.
    29. I’m involved with Invisible Illness Week because: People need to know that illness or disability may not be apparent, but is still very real.
    30. The fact that you read this list makes me feel: Hopeful for humanity.

  21. 30 Things About My Invisible Illness You May Not Know
    1. The illness I live with: Lyme disease

    2. I was diagnosed with it in the year: 2008

    3. But I had symptoms since: 1978

    4. The biggest adjustment I’ve had to make is: not being able to work and needing help

    5. Most people assume: that I feel fine

    6. The hardest part about mornings are: getting out of bed

    7. My favorite medical TV show is: House..felt like a case on the show!!

    8. A gadget I couldn’t live without is: my pill box…only way to remember if i have taken my pills

    9. The hardest part about nights are: not knowing what tomorrow will bring..if I will be able to walk or be able to tolerate holding my pounding head up

    10. Each day I take _20_ pills & vitamins.

    11. Regarding alternative treatments I:accept any treatment at this point that will make me feel well again…one day without pain!

    12. If I had to choose between an invisible illness or visible I would choose: a visible one!!!! at least people would understand how I feel. Now people think I am fine, just wish they knew how I actually felt, and how much I still struggle, how much pain I endure every single day!

    13. Regarding working and career: I do miss it…but don't think my mind is all there to do it, or the physical stamina.

    14. People would be surprised to know: How scared I get when I am unable to remember things, or how to do things. How 'dumb' I feel to forget what I used to know. I used to think I was smart, now…not so much.

    15. The hardest thing to accept about my new reality has been: the feeling of 'giving up' so much of who I used to be. I am a different person now and I am not sure if I like her yet. And hearing my doctor tell me that my blood work is still bad, hard to treat, and I should get used to my 'new' life.

    16. Something I never thought I could do with my illness that I did was: have children

    17. The commercials about my illness: what commercials?? there are none

    18. Something I really miss doing since I was diagnosed is: driving my car!

    19. It was really hard to have to give up: my freedom!!

    20. A new hobby I have taken up since my diagnosis is:watching my muscles twitch!! :)

    21. If I could have one day of feeling normal again I would: take my boys out for the day, play with them and do anything they wanted.

    22. My illness has taught me: that I know more about my body and what is wrong than most doctors

    23. Want to know a secret? One thing people say that gets under my skin is: "how are you feeling? you look great!" (if only you knew how I truely feel..and, why ask how i am doing…do people really want to know the truth? )

    24. But I love it when people: do things for me without me having to ask. asking for help is hard when I used to do it all on my own!

    25. My favorite motto, scripture, quote that gets me through tough times is: "For I know the plans I have for you, plans to prosper you, plans to give you hope, and a future" Jeremiah 29:11 helps me when i started to question why this has happened to my family…my illness has affected my whole family

    26. When someone is diagnosed I’d like to tell them: that they are not alone, and it's not "in their head". find a good lyme doctor

    27. Something that has surprised me about living with an illness is: how hard it is to find a doctor and receive medical care…no one seems to want to help me except my lyme doctor and he is sooo far away

    28. The nicest thing someone did for me when I wasn’t feeling well was: bring me meals, help with money, help with kids

    29. I’m involved with Invisible Illness Week because: this disease is very real, very powerful, and very life-changing. It would be nice if I felt like I didn't need to wear a symptom list attached to my forehead everyday so people really knew how I felt.

    30. The fact that you read this list makes me feel: HEARD!! and hopeful for a greater understanding of how this disease affects lives

  22. 30 Things About My Invisible Illness You May Not Know

    1. The illness I live with is:

    Autonomic Nervous System (ANS) Dysfunction/Dysautonomia. I have two forms of this: Postural Orthostatic Tachycardia Syndrome (POTS) and Neurally Mediated Hypotension (NMH).

    Chronic Lyme Disease

    Partial Diabetes Insipidus

    2. I was diagnosed with it in the year: It's been an evolving process filled with diagnoses and misdiagnoses. Final consensus on forms of ANS Dysfunction in 2004. Chronic Lyme Disease in 2005. Partial Diabetes Insipidus final consensus in 2008.

    3. But I had symptoms since: 1998

    4. The biggest adjustment I’ve had to make is: Everything! The big ones: Not being able to stand, sit or walk for any period of time. Activities have to be done reclining. Being mostly homebound. Being dependent on others.

    5. Most people assume: That I if I 'look good', I feel good. That I have a lot of 'extra time on my hands'.

    6. The hardest part about mornings are: Mornings? I avoid them if at all possible! The hardest part is getting out of bed b/c I never feel rested or refreshed when I wake up. Also, I take medication at least 30 minutes before I sit up in bed in order to raise my blood pressure enough for me to get up.

    7. My favorite medical TV show is: No thank you! I have enough medical drama in my own life and that of my friends who are sick.

    8. A gadget I couldn’t live without is: My adjustable Tempur-Pedic bed. I am sure I could 'live without' my other gadgets, but I do love them and they keep me engaged in the world whether it's email, blogging, taking photos, talking on the phone, watching a TV show, or listening to a book on CD (I can't focus to read). So I love my cell phone, TiVo box, Laptop computer, iPod, Radio, CD player, TV, Digital Photo Frame, Electric Toothbrush. :)

    9. The hardest part about nights are: Getting to sleep and staying asleep! Loneliness and isolation. The sleepless ones filled with unrelenting ANS symptoms like low BP and forceful heartbeats.

    10. Each day I take at least 30 pills & vitamins. (No comments, please)
    Note: Some of these are the same medication. For example, I take medication every 3 1/2 hours during the day to raise blood pressure. This is at least 9 of the pills I take each day.

    11. Regarding alternative treatments I: am willing to try them, within reason. I view them as a complement to treatment but not the cure. I have tried MANY different therapies over the years, many with no success and others with good success.

    I eat a wheat-free, gluten-free, dairy-free diet.

    I have had excellent success with bodywork over the past 10 years. I have two sessions of bodywork per week and find that I cannot go without these to manage muscle pain and tightness, etc. Currently I get a mix of massage, energy work, myofascial work and cranial-sacral therapy. It's working well for me right now.

    I try to be mindful and use guided imagery cds, focus on my breathing, etc.–I so need to do more of this! I love yoga, and do a few simple stretches daily, but have not had enough strength/energy to pursue it further.

    12. If I had to choose between an invisible illness or visible I would choose: Probably invisible, only because our society makes it even more difficult if you are 'visibly disabled'. It can be nice to 'pass' as healthy, which I feel terrible even saying. I now use a wheelchair for most of my outings, so this makes my illness more 'visible'.

    13. Regarding working and career: I can't even go there.

    My full-time job right now is managing my illness and going through the grueling treatment for Lyme disease.

    I try to focus on the present because I have no idea what my health will look like in the future. I believe that my journey and experiences now will lead the way when it is time for me to possibly work.

    14. People would be surprised to know: That I am always having some sort of symptoms, that I am never symptom-free, that I never feel 'well' even on a 'good day' and that I never feel 'alive in my body' the way I did before I got sick 11 years ago.

    15. The hardest thing to accept about my new reality has been: The unknowns and uncertainties of these illnesses. The sense of loss I feel living in a body that cannot do what my spirit so longs to do. Not being a mom is currently at the top of that list.

    16. Something I never thought I could do with my illness that I did was: Persevere this long. Use my voice to share about my experience in a way that will hopefully help raise awareness and understanding and bring others comfort.

    17. The commercials about my illness: Um, commercials about this stuff? Hard to imagine that!

    18. Something I really miss doing since I was diagnosed is: Dancing. The everyday things people do without a second thought–going for a walk, running an errand, driving, going to the grocery, reading, going out with friends, traveling…okay, I'll stop now! Being able to do even the simplest of things without having to think about the consequences on my body.

    19. It was really hard to have to give up: The 'picture' of life I had in my head at age 22 when I got sick. So much of my independence. Oh, and Mac 'n Cheese, Pizza and Ice Cream! :)

    20. A new hobby I have taken up since my diagnosis is: Blogging. Knitting. Both of these can be done reclining! I'd do a lot more things if there was energy for them.

    21. If I could have one day of feeling normal again I would: Spend it in a beautiful place (preferably by the ocean) with people I love. Eat wonderful food, play with Asher, go for a walk, enjoy the sunrise and sunset, drink a glass of wine, dance, laugh a lot, feel the sand between my toes, go in the water. Maybe do something cool like go in a hot air balloon or swim with the dolphins. :)

    22. My illness has taught me: That I have no idea what a person has been through or what suffering they have endured just by looking at them. Suffering cannot be 'compared'. Hopefully I have learned to be more empathetic, compassionate, loving, and patient. As someone who wanted to go into medicine, I've learned a very different side of things–through a patient's eyes.

    23. Want to know a secret? One thing people say that gets under my skin is: I don't like platitudes. At all.

    24. But I love it when people: Read my blog. Have empathy. Just let me know they are thinking about me–an email, card, or phone message can change the entire trajectory of my day.

    I just listened to The Girls From Ames on CD and thought this quote was perfect (from one of the women going through chemo):

    "Never doubt the power of phone messages, cards, or emails when someone is going through a tough time. Even the briefest of messages have reminded me that I am never alone…"

    25. My favorite motto, scripture, quote that gets me through tough times is:

    "Hope is the thing with feathers that perches in the soul and sings the tune without words and never stops at all." — Emily Dickinson.

    "Dance is the Hidden Language of the Soul" by Martha Graham. I like to think that my spirt still dances even though my body cannot.

    26. When someone is diagnosed I’d like to tell them: What a wonderful doctor told me that changed my life, "Listen to your body. And never take no for an answer."

    I'd like to tell them that those of us who have travelled before them will hopefully make the road a little easier for them and that they are not alone.

    27. Something that has surprised me about living with an illness is: That the emotional challenges are as great or greater some days than the physical ones–the feelings of grief, loss, isolation, loneliness, guilt, worthlessness, uselessness, etc. that go along with being chronically ill. How uncomfortable so many people are with it. That it's a full-time job. That it affects EVERYTHING in my life and my family's life.

    28. The nicest thing someone did for me when I wasn’t feeling well was: I've been very blessed in this department, especially by my parents and Abbie. I wouldn't know where to start with all of the nice things they do. My mom will always make homemade chicken soup when I need it. My parents will both stay the night with me and hold my hand through things. Mostly the little things like phone calls, emails, flowers, and snail mail keep me going when I don't think I can go anymore. I love when my friends and family include me the world that I so often feel left out of–like keeping me in the loop with photos and news, coming to visit, asking me to be in a wedding, asking me to be an aunt to David, etc.

    29. I’m involved with Invisible Illness Week because: One of the ways I survive is by hoping that my experience will somehow make the experiences of those who follow easier. I think raising awareness about invisible illness is incredibly important if those who are chronically ill are to receive better care, support, compassion and understanding and less isolation, loneliness, and stigma.

    30. The fact that you read this list makes me feel: Humbled and grateful.

  23. 30 Things About My Invisible Illness You May Not Know

    1. The illness I live with: Lyme and coinfections + mycoplasma
    2. I was diagnosed with it in the year:2007
    3. But I had symptoms since: probably off and on for years since my 20's, really took off in october 2006
    4. The biggest adjustment I’ve had to make is: giving up life as i knew it, being fiercly independent and accepting the limits it's placed on me physically and mentally
    5. Most people assume: i'm fine , healthy or a hypochondriac
    6. The hardest part about mornings are: forcing myself to face another day of this and the inside tremors i usually wake too
    7. My favorite medical TV show is:mystery Dx and untold stories in the ER…i'm a nurse….watched then before too!
    8. A gadget I couldn’t live without is: my computer since being sick, keeps me informed and connected somewhat
    9. The hardest part about nights are: staying asleep, having to take more meds to keep me asleep
    10. Each day I take 25+ shots__ pills & vitamins. (No comments, please)
    11. Regarding alternative treatments I:will try pretty much anything and have…..could stock my own health food store with all the supplements i've tried
    12. If I had to choose between an invisible illness or visible I would choose: i guess i would choose to be healthy……..otherwise, i would wish it was visible, so i am taken seriously
    13. Regarding working and career: it's been a rough ride, worked 2 full years sick as could be, cognitive issues started and was struggling as a nurse, have been out since april and am hoping to find someplace i can function without hurting anyone..frustrating when noone seems to understand
    14. People would be surprised to know: i hardly have any minute of the day when i feel well, or don't have pain and have been near suicide more than once! and i'm embarrassed by what this illness has done to my personality…i find it hard to be around other's ina social setting anymore
    15. The hardest thing to accept about my new reality has been: the loss of my personality, i don't even resemble the person i was….and as someone else said, not sure i like the withdrawn silent person i've become
    16. Something I never thought I could do with my illness that I did was: searched endlessly until i found an answer 4 hours away………even tho i work in a large hospital…….they had no clue and delayed my treatment which has left me in this living hell
    17. The commercials about my illness: there are none!!
    18. Something I really miss doing since I was diagnosed is: socializing, carrying on a conversation, interacting in general with my kids…exercising and being fit
    19. It was really hard to have to give up: my life completely
    20. A new hobby I have taken up since my diagnosis is: searching the internet for answers endlessly, watching tv, lounging around
    21. If I could have one day of feeling normal again I would:be in the gym, out running, out with my kids and friends
    22. My illness has taught me: i am not in control
    23. Want to know a secret? One thing people say that gets under my skin is: you look fine, you just need to get out!
    24. But I love it when people: ask and are truly interested in knowing about the illness
    25. My favorite motto, scripture, quote that gets me through tough times is: it does not matter how slow you go so long as you do not stop: confucius
    our greatest glory is not in never falling,but getting up everytime we do

    26. When someone is diagnosed I’d like to tell them: your not alone, find support online, a good LLMD and don't stop until you get an answer, there's no time to waste
    27. Something that has surprised me about living with an illness is: how much I cant do anymore, and how horrible someone can actually feel and still be here
    28. The nicest thing someone did for me when I wasn’t feeling well was:believe me, my sister listened to me for hours chatting til all hours online during the darkest periods…..where i thought i would take my life over living this way. a friend at work gave me some of her sick time to help me financially
    29. I’m involved with Invisible Illness Week because: Lyme needs to be recognized, people need to be aware this could be you or someone you love and there is no easy answer and it devastates those affected
    30. The fact that you read this list makes me feel: it was worth my time if someone gets a better understanding of the devastation of this disease

  24. 30 Things About My Invisible Illness You May Not Know

    1. The illness I live with: Lyme disease
    2. I was diagnosed with it in the year: Feb 2009
    3. But I had symptoms since: Aug 2008
    4. The biggest adjustment I’ve had to make is: change my diet to gluten and dairy free and give up alcohol and caffeine. Also living by alarm clocks to remind me to take pills every 2 hours.
    5. Most people assume: if I have a good day or since I look good, I must be getting better.
    6. The hardest part about mornings are: knowing I can never sleep in b/c I have to get up and take my first round of medicine or I’ll never get in all the rounds before midnight.
    7. My favorite medical TV show is: Greys anatomy but it was b4 Lyme too  It makes me feel better to know there are worse things than Lyme, like having a pole stuck through you. I also like House b/c that’s the kind of doctor I needed to get diagnosed; all the others threw up their hands and just assumed I was depressed or it was just in my head.
    8. A gadget I couldn’t live without is: not really a gadget but I couldn’t get through this without my PJs and my down comforter.
    9. The hardest part about nights are: nights are nice b/c I’m all alone so I don’t have to pretend I’m strong or put on a smile for anyone, I can just sit in my shower and cry or scream at the wall without judgment.
    10. Each day I take 64 pills & vitamins.
    11. Regarding alternative treatments I: aside from the antibiotics, the rest of my treatment includes natural supplements and oils and my doctor performs muscles tests each month. I’ll be trying acupuncture this month too but unsure if it will help.
    12. If I had to choose between an invisible illness or visible I would choose: VISIBLE! Then people would understand why this is so hard to fight, that I’m not crazy, why I cant hang out anymore, and would stop telling me how great I look.
    13. Regarding working and career: I’m actually so lucky – I’m able to work a few hours two days in a row but that’s about it. I know there are so many that cant work at all. As for my career, I was going to school for a BS in Accounting but I had to drop out.
    14. People would be surprised to know: Treatment plans are very controversial. I am on an extended treatment of Lyme but this treatment plan is not currently recognized so it’s hard to find doctors who will treat it for longer than a month or two. This also means it’s hard to get insurance to pay so most of my expenses come out of pocket. I spend around $1500 a month on doctor visits and medication.
    15. The hardest thing to accept about my new reality has been: That I cant do the things that I used to like work a full days shift, clean my house, remember my address, cook a meal, etc. I need to accept that it takes me longer to do things (like it took me 2 weeks to answer these questions!) and that I wont be able to do most things so I have to just let it go.
    16. Something I never thought I could do with my illness that I did was: Stay so dedicated to pill schedules and the strict diet.
    17. The commercials about my illness: don’t exist
    18. Something I really miss doing since I was diagnosed is: anything that requires energy and eating my favorite foods
    19. It was really hard to have to give up: my life before all of this
    20. A new hobby I have taken up since my diagnosis is: reading blogs about lyme disease. I wish I had enough energy to pick up an actual hobby though!
    21. If I could have one day of feeling normal again I would: visit with all my friends, go to the gym, and eat macaroni and cheese
    22. My illness has taught me: to listen to my body more and be able to treat/diagnose myself
    23. Want to know a secret? One thing people say that gets under my skin is: “On the positive side, you have lost so much weight!” I didn’t want to and no, it’s not positive when it’s a side effect of a scary illness – just one more thing I cannot control that is happening to me. I also hate when people say, “But you look so good!” Thanks, I feel like Sh#*!
    24. But I love it when people: research Lyme and ask me about it b/c they sincerely want to learn and help. One of the coolest things was my Aunt stopped eating Gluten just to see how hard it is. I thought it was neat that she would try to walk in my shoes for day, even if it’s just one aspect of what I’m going through.
    25. My favorite motto, scripture, quote that gets me through tough times is: I feel really bad b/c I haven’t turned to scripture yet and I know it will help. Mostly I just repeat to myself “just keep breathing.”
    26. When someone is diagnosed I’d like to tell them: I like to share my symptoms b/c when I was first diagnosed I really wanted to know that there were other people out there going through the same thing.
    27. Something that has surprised me about living with an illness is: it becomes your whole life – every minute is saturated in it. And also that I don’t recognize myself anymore.
    28. The nicest thing someone did for me when I wasn’t feeling well was: randomly mail me a comedy DVD, it was completely unexpected and I love that they knew laughter helps
    29. I’m involved with Invisible Illness Week because: I am suffering and I want to bring recognition to this disease with more approved treatments and insurance coverage
    30. The fact that you read this list makes me feel: understood

  25. 1. The illness I live with: Chronic Lyme
    2. I was diagnosed with it in the year:2012
    3. But I had symptoms since: I HAVE NO CLUE?
    4. The biggest adjustment I’ve had to make is: Not doing the things I love outdoors, but I try anyway until I can’t anymore.
    5. Most people assume: I’m fine, I look normal, maybe a little tired, but normal. 6. The hardest part about mornings are: Getting up. Hard to fall asleep, all I think about is dying because I don’t see an end this. But push ahead somehow.
    7. My favorite medical TV show is: HGTV, need to keep away from medical shows, but if I had to pick one it would be House.
    8. A gadget I couldn’t live without is: My iPhone and computer.
    9. The hardest part about nights are: Getting to sleep, I worry too much, and think about Lyme constantly.
    10. Each day I take a lot of vitamins, herbal tea, filtered water and herbal drops. (No comments, please)
    11. Regarding alternative treatments I: Am trying everything to feel better. But have spent thousands doing so.
    12. If I had to choose between an invisible illness or visible I would choose: neither, but I once did ask for a cancer diagnosis, just so I would have a diagnosis. Not knowing what’s wrong with you is frustrating to say the least.
    13. Regarding working and career: I manage, but its hard dragging myself there every day.
    14. People would be surprised to know: That I have Lyme.
    15. The hardest thing to accept about my new reality has been: The not knowing if I will ever get better.
    16. Something I never thought I could do with my illness that I did was: hiking the trail to the top at Mohonk Mountain house, after not being able to walk to the mailbox without pain 1 year earlier
    17. The commercials about my illness: non existent
    18. Something I really miss doing since I was diagnosed is: Playing tennis
    19. It was really hard to have to give up: working out like I used to at the gym, now I just do what I can.
    20. A new hobby I have taken up since my diagnosis is: Scanning he web for information to cure me.
    21. If I could have one day of feeling normal again I would: Play tennis, run around the block and kiss my feet!
    22. My illness has taught me: How important health really is.
    23. Want to know a secret? One thing people say that gets under my skin is: When they ask you how your feeling and you start to tell them and then they get that look in their eye like you’re crazy like you’re making it all up cause you look just fine.
    24. But I love it when people: JUST LISTEN
    25. My favorite motto, scripture, quote that gets me through tough times is: Keep the faith and keep going to find a cure. You just want to be normal again!
    26. When someone is diagnosed I’d like to tell them: Your so lucky that they caught it early and your test result actually came back positive not negative like mine over and over again, but it sounds really bad when you say that because they don’t get how long you’ve been sick.
    27. Something that has surprised me about living with an illness is: I am tougher than I thought.
    28. The nicest thing someone did for me when I wasn’t feeling well was: Help me inject my first doses of meds, because I was afraid to be alone doing that the first couple of times.
    29. I’m involved with Invisible Illness Week because: I know I’m late for the week, but I just stumbled upon this online and had to put my two cents in.
    30. The fact that you read this list makes me feel: You also have Lyme and you are looking for answers and support like I am and so many others- See more at: http://lymedisease.org/news/touchedbylyme/187.html#sthash.M2NAcNhs.dpuf

  26. 30 Things About My Invisible Illness You May Not Know

    1. The illness I live with: Lyme Disease and Co-Infections
    2. I was diagnosed with it in the year:2013
    3. But I had symptoms since:1982
    4. The biggest adjustment I’ve had to make is: relying on others to do things that i can no longer do.
    5. Most people assume:I am lazy and lack motivation
    6. The hardest part about mornings are:Mornings are generally my best time of the day :)
    7. My favorite medical TV show is:House… He could ALWAYS solve any medical mystery.
    8. A gadget I couldn’t live without is:my laptop
    9. The hardest part about nights are:being so tired, but unable to sleep soundly.
    10. Each day I take _24_ pills & vitamins. (No comments, please)
    11. Regarding alternative treatments I:have tried some and will continue to use them.
    12. If I had to choose between an invisible illness or visible I would choose:visible
    13. Regarding working and career:If I could retain information or have the physical and mental ability, I’d love to open my own business. That is on hold for the time being.
    14. People would be surprised to know:that I am generally a very opinionated person.
    15. The hardest thing to accept about my new reality has been:that I cannot do the things that I love.
    16. Something I never thought I could do with my illness that I did was:create a support group.
    17. The commercials about my illness: I’ve never seen any on tv.
    18. Something I really miss doing since I was diagnosed is: socializing and hanging out with my friends.
    19. It was really hard to have to give up:laying out in the sun (meds)
    20. A n new hobby I have taken up since my diagnosis is: pintrest
    21. If I could have one day of feeling normal again I would: go zip lining, soak up some sun, have some drinks and hang out with my friends and family.
    22. My illness has taught me:that I need to practice patience, nothing comes quickly.
    23. Want to know a secret? One thing people say that gets under my skin is:Gee, you look good. Is your Lyme gone?
    24. But I love it when people:ask questions and show a genuine interest
    25. My favorite motto, scripture, quote that gets me through tough times is: “Character is how you treat those that can do nothing for you”.
    26. When someone is diagnosed I’d like to tell them: Hold onto your hat, it’s going to be a bumpy ride. Get an LLMD, find a good support group, and ask for help.
    27. Something that has surprised me about living with an illness is: that I have A DISEASE that MOST doctors are clueless about.
    28. The nicest thing someone did for me when I wasn’t feeling well was: Picking me up and driving me to a Lyme meeting so I wouldn’t be left out.
    29. I’m involved with Invisible Illness Week because: There needs to be MAJOR education, awareness, research, funding, acceptance and health care coverage for Lyme.
    30. The fact that you read this list makes me feel: happy. I hope you ask me more questions.

    - See more at: http://lymedisease.org/news/touchedbylyme/187.html#sthash.906UYiHM.r8Sa4i62.dpuf

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