I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts

Ah,

the life of a bird

who does not love so much

that it hurts

 

 --LWK

 

 

 

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I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by a child, age 11

Monday
Jan112016

The top 25 Benefits to Dealing with Lyme

Having Lyme and co-infections in the family can be a real downer, but if I dig deeply enough, even I can find some 25 silver linings to contending with disease. Ready for this? Here goes!

25. I am so much smarter! I can now name about a dozen different antibiotics, at least, plus other medications. I know how to split pills. I know not to give doxycycline with dairy. I know you must take mepron with a fat. Just call me a home pharmacist. That sounds so wrong, but every one of the medications in my house is legal.

24. I know how to detox. Lemon water, pinella, burber, parsley drops, epsom salt baths, glutathione, etcetera. 

23. I know more than most doctors about deciphering a Lyme Western Blot test. Yep. I know that many infectious disease doctors and pediatricians tell people they don't have Lyme, even when the test is positive. I know that many Lyme tests are falsely negative. 

22. A know what a Herxheimer's reaction is. And I've read up on Jarisch Herxheimer.

21. I know what a spirochete is. And I do not have syphilis. I know that the Lyme spirochete can morph.

20. I have a zillion friends across the world who are available at all times of the day. And night. Because Lymies often have trouble sleeping. And then, there are folks in completely other time zones in the support groups. For the most part, we all stick together and pull each other up. The worldwide web is a great invention.

19. I'm smarter than a fifth grader. Now, my 5th graders are pretty intelligent and catch me when I make mistakes (I reward them when they do) but I have to say that I've had quite a self-education in the last few years when it comes to getting my home-brewed medical degree.

18. I've learned to question big business and Pharmaceutical firms. And to think I once dated a scientist for a pharmaceutical firm! This was way before I met my husband. It was pretty funny. We went out to dinner with my brother and his new girlfriend who was a big environmentalist and she chided my date on experimenting with mice and cells. She and my brother eventually broke up and she became one of my bestest friends in all the world! At any rate, where I once trusted pharmaceutical companies, I now know that they control so many of the medical decisions and laws. But they're financially driven.

17. I know more than many doctors. Ask me about PANDAS/PANS or Lyme. Do it, Doctor. Because I've been studying these diseases for the last few years. Don't tell me that PANDAS is a myth. Don't tell me that Lyme is cured with two weeks of antibiotics. These fallacies are increasing the duration of the illnesses.

16. I know that I can never donate blood. My blood contains babesia and borrelia. The nation's blood supply is not screened for these tickborne diseases. I would not like to have to accept blood from a blood bank at this time. I don't want to give anyone else Lyme; I already passed it to my kids. Knowledge is power.

15. I know enough to tell a hospital to not give Tylenol because it's a glutathione blocker and someone with an autoimmune disease needs glutathione!

14. We're some of the cool ones who have done genetic testing. 23andMe, Courtagen, and more.

13. I appreciate symptom-free  days. My hip didn't hurt! I didn't feel dizzy! I didn't have to lie down! My nose didn't twitch! My son was happy all day! Wow! Yippee!

12. I am ever grateful to the great doctors I've found for myself and my family. There are truly special out-of-the-box thinkers and doers in the world who care more about helping people than they do about fitting in to the system.

11. In the last five years, I've read more scientific studies and articles than I did in twenty years of schooling.

10. Friends of mine and I speak a univeral language: pandassy, herxing, detoxing, running out of spoons, bart, babs, DS, DD, DH (dear son, dear daughter, dear husband,) ABX, IgG, IgM, ASO, dNase, LLMD, MTHFR, methylation, biofilms, neurotransmitters, essential oils, activated charcoal, etc.)

9. I can help bring change to our world; I can inspire others, I have the opportunity to educate on a larger platform. We have had a great start with the Lyme Disease Challenge.

8. I know other risk takers and change makers; I recognize strength in people who contend with medical conditions that would weaken their bodies.

7. We are writing history and "Her" stories with our blood and tears and blogs.

6. I have a meaning in life other than my family and work and art (writing/singing.)

5. I have learned how to practice hope and how to look for all the positives in my life.

4. I have learned to live in the moment.

3. I know that when I love, I love with all my heart and will do anything to help the people I care about.

2. I no longer fear my own death because life is pretty difficult, but I know that my children have a great need of me--and will always, as we still need my inlaws, father, godmother, family and friends.

1. I measure success far differently than ever before. Success is pushing oneself to go to school for an hour, walking out the front door to the end of the street, wearing a smile and getting through the day without anyone knowing how sick or sad i feel. Success is seeing my child come back from losing math facts to being tops in math again. Success doesn't mean going to the best colleges or having the biggest house or the fattest paycheck. Success is still having a partnership with my children's dad when marriage seems to be the last thing we think about. Success can mean a family dinner where everyone is laughing and cheerful. Success can be that feeling of contentment that I've done all I can for the day as I curl up with a good book. Success is coming up with 25 benefits of dealing with Lyme Disease. Can you think of more?

 

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