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

 

 

 

Blog Index
This area does not yet contain any content.

 

I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by a child, age 11

Saturday
Apr162016

Lyme Drunk

OK, so, that title is false advertising because I have no plans of getting drunk tonight or any night. Perhaps I should entitle this "The Perils of Finding a Drink I Can Drink" or "Everything I Cannot Have at the Liquor Store."

Gone are the days of heading out with friends to a bar, gone are the days of dinner dates with the husband, gone are the parties. Life throws in strange twists for families with Lyme and PANDAS. But that doesn't mean I never want another drink. I know I can't handle that much (without feeling like falling asleep) but I still enjoy the taste of a grapefruity Sauvignon Blanc or the adventure of a new cocktail.

But life is complicated and while I should (they say don't "should" on yourself) avoid alcohol and sugar altogether, I don't. However, since I am pulsing Tindamax (an antibiotic that helps to break open the cysts and biofilms of Lyme so that the doxycycline can get in and make their kill), I cannot have alcohol for at least 72 hours after the last pill without the likelihood of vomiting. 

This leaves me one night during the week to have alcohol. I kind of missed that night for the first few weeks--didn't care, didn't plan, whatever. But for the last two weeks, the idea of a drink has permeated my brain.

Last week, I carefully plotted out the days of Tindamax so that I could have a drink on Saturday night. I had it all calculated...my husband and I would slip out of the house, leaving the kids contentedly watching TV, and go to a restaurant/bar for a date. Well, Saturday day came and the kids had a big argument. Oops. There was no leaving them alone. Saturday night came around and I just wasn't in the mood anyway. 

Another time, dear.

Sunday morning came along and so did the Tindamax. 

It figures that the time I most want a drink is during the work week, when I'm in the midst of Tindamax. Isn't this crazy, though? Planning medications around a planned alcoholic drink that I probably wouldn't care about if I weren't on medication that prevented me from having an alcoholic drink? 

Tonight was supposed to be THE NIGHT. My husband encouraged me to take a run to the liquor store and get the supplies. But trouble lay ahead.

I am gluten-free, dairy-free, agave-free, oat-free, green pepper-free, coffee-free. I might as well just drink air.

I was in such a mood for a whisky sour, that sweet, tangy, bitter drink. But whisky, I learned, has gluten. I love margaritas. But margaritas have tequila which is made from the agave plant and I tested sensitive to agave. I also tested highly sensitive to coffee (hence, no Kahlua,) dairy (bye bye all cream drinks,) and peppers.

Oops. I goofed. Dang it all. After a major consultation with the owner of the liquor store, who explained that some vodkas are potato based and others are grain based (and was super helpful,) I bought a mixer for Blood Mary. I neglected to remember or tell her that I was supposed to avoid peppers, though, so I bought the SPICY one! 

I will enjoy my one drink tonight. If I can stay awake long enough!

The day after: It was no big deal. I may as well have had a V8!

Saturday
Apr092016

Parallel Worlds: College time

I have a good friend whose main concern right now is determining the college her daughter will attend. Will College "A" give her the education she needs in order to acquire a job when she gets out? Will College "B" provide her with enough financial support? Will she enjoy living at College "C"? And then, of course, there's that overriding question--will she be accepted by these schools? If she's accepted by all of them, how will she make the choice? If College "A" offers her $20,000, can they bargain with Collegee "B" to give the same grant? Will she end up owing more money than she can make in 20 years of working? Will her parents, my friends, foot the bill? And if so, when will they be able to retire?

Meanwhile, I'm attempting to determine the best medical treatment plan for my teenager. Do we try IV antibiotics? If so, can my child get off of them by summertime so that he can swim at the beach? What are the complications of using a port vs. a PICC line? Who will insert it and will insurance cover this? Will the new neurologist we just saw ($$$) prescribe IVIG? Or will he require yet more tests? Are my son's immune scores rising or falling? 

For my friends, as for anyone, having a child accepted into college is significant. Their child has lettered in sports, played a musical instrument, received high grades. This child is healthy and has never experienced anything severely medical. That's normal, right? But this college experience is a first and it's tension-inducing and my friends have a right to vent. It's just a good thing that people cannot always read my mind.

My child, on the other hand, is sick. He has not been able to run with the football team for years, to join track this year or the soccer team. My brilliant child has trouble thinking because of brain fog from Lyme. He can't even attend school. 

If your child is ill, what do you say when you attend a party and someone asks you, "Does your child participate in sports? How does your child enjoy school?"

This is small-talk--conversation bent on forming connections between parents emerging from separate worlds who have nothing other than a child in common.

Do you answer with, "My child is horribly ill, has been hospitalized because of Lyme Disease--do you know that it can be transmitted congenitally, even sexually? Yes, that is shocking, isn't it? It's a spirochete, much like syphilis is...."

Ahh, such perfect dinner party conversation.

Or, "My child has PANDAS. Let me spell that our for you. P for.... And she's flaring. She's so immune compromised right now that she's on her third cold in a month and that results in increased tics and OCD and major separation anxiety...in fact, I was lucky to get out tonight. Yes, she's 18. And usually, I have no life." 

Way to pick up the party, yeah!

No, we can't share much. So we listen. And hear about the successes that normal kids enjoy. The colleges visited, the application process, the guidance counselors who show support. We don't mention the multitude of doctors and therapists and the hundreds of tests that our children must take (because they're blood tests.)

The question remains...what about our children's dreams? I cannot yet imagine my child leaving for college. He doesnt' even know what pills he takes, nor is he interested. When he's ill, he has difficulty managing stress. If he stays on a pass/fail system in high school, he won't be able to apply to a regular college but will be forced to attend a community college first. Which isn't a bad idea, as it would give him more freedom to grow, to treat, to improve and to live at home. 

Admittedly, when I was applying for colleges many years ago, the state school was my back-up. Community colleges weren't even in the picture. I applied early decision to a good school and stayed there until my parents' divorce forced me to a less expensive school. And guess what? The state school was stellar.

Snobbery will get me nowhere when it comes to my kids' educations. We will need to re-assess their dreams and needs as we progress. I'm not alone in this. For every friend whose kids are looking to leave home for college, I have yet another friend who has a child unable to attend at this time because of a medical disease. We want our children to have successful futures and happiness, as well as a fun job with health insurance someday. 

Fact: There are more good colleges and universities than there are good PANDAS/PANS and Lyme doctors.

Fact: It's as difficult to acquire an initial appointment with good PANDAS and Lyme doctors as it is to get accepted to a good university. Maybe even harder. 

Fact: It can be more challenging to find a treatment plan that works than it is to declare a major.

Fact: There's probably more financial aid for schools than there is for medical needs.

Fact: I can't brag about my son and our medical challenges the way my friends can brag about their kids. 

Fact: I must listen to friends as they stress about healthy, normal life events. Because if I can't listen, I won't be reciprocating. And they won't want me as a friend anymore. I like these friends. I want to be there for them. But I can't help comparing the enviable place their child is in with the unenviable place mine is in.

Fact: There are thousands of parents and children whose first priority is to deal with medical illnesses and for whom college will not be as integral in the near future.

Fact: My child might not go to college. Whereas he once wanted to be a scientist, school has become a breeding ground for anxiety and brain foggy-perceived failures (he's actually doing OK.) He has it set into his mind that if he cannot graduate in four years with his peers, that he will drop out of school. He has also determined that his band will become famous and successful and so he won't need college. I tell him he needs at least a business degree because too many musicians lose money to their managers. But he's a teenager, albeit an unhealthy one. He doesn't want to listen to Mama.

Fact: We have no money saved up for our children's colleges. All of our money has gone to treating the medical issues which plague each member of our family. There's a lot of love in our family but that doesn't pay the bills. 

Fact: My children would probably fare better when applying to college if they keep a blog or write a book about their experiences with Lyme Disease but they're Lyme'd out and want nothing to do with it. They won't write music about Lyme either, at this time. Teenagers.

So, our parallel lives continue. Our hidden one of dealing daily with medical woe is no less as stress-filled as the ones that are typical. Imagine. I once thought my parents' divorce and my subsequent transferring of schools was the worst ordeal ever. At 19, I had no idea what it would be like to have a sick child. But the ordeals of long ago have given me the strength to deal with the challenges today. I know that whatever the future brings, I'll have friends there to tell me that I'm not alone. Especially when I'm still working to pay off the loans we took out to cover our medical costs!

Thursday
Mar312016

New Research Propagates Lyme Myth

Yet another media source has published the latest Lyme story with the headline: "Long-term antibiotic treatments don't work on Lyme Disease." It's a media hay day, but for Lyme sufferers, it's a media hell-day.

According to this new story, researchers in The Netherlands tested a total of 281 subjects suffering from chronic Lyme Disease by giving antibiotics for up to 14 weeks. You can see the published medical study here. This article, and hundreds more like it, state that the subjects, all of whom had been diagnosed with Lyme, did not report improvement after the initial two week period. The researchers therefore concluded that extended periods of antibiotics do not provide any more benefit than a short-term dose of antibiotics.

Logic like this will lead you to buy the nearest decrepit bridge.

Here are some of my issues with this:

1) Were any of these 281 patients tested for co-infections? According to Dr. Daniel Cameron, it is very rare for people to only have Borrelia. If co-infections aren't treated, Borrelia can not be effectively fought. Co-infections are the norm. See here for his blog. Dr. Cameron also states that, "Typically, clinicians do not test for co-infections when Lyme disease is suspected." According to Dr. Richard Horowitz, "The existence of these co-infections — so-called because they are often transmitted along with Lyme disease — explain why some people with Lyme remain chronically ill even after treatment: while the Lyme is identified and treated, these other infections are not. In addition, testing for co-infections is often unreliable, as it is for Lyme disease, so co-infections often go undiagnosed."

2) Lyme morphs. Dr. Eva Sapi has made a name for herself while helping countless others with her discovery of biofilms and cysts (round bodies) and herbals such as Samento and Banderol that can help to dissolve these thin layers so that the Borrelia can be killed.

3) Twelve weeks? Really? Many of these patients had been sick for years already. Lyme pervades the organs, the joints, the hide-away places and it takes more than a quick fix to eradicate it. I've never heard of someone with chronic Lyme who was cured within 12 weeks.

4) Three antibiotics? Most Lyme Literate doctors are switching up the antibiotics. Recently, researchers have discovered that pulsing antibiotics helps to fight what they have termed Persister Cells

5) Persister Cells: Check out this research. Maybe this can explain why this population wasn't cured in twelve weeks. According to a Scientific American article, persister cells "are bacteria that have gone into a dormant state, ceasing the types of cellular activities that antibiotics typically thwart. Previous research has shown that when persisters of other bacterial species are removed from a bath of antibiotics, they begin to grow again."

6) ILADS has published a list of over 700 peer-reviewed studies that show evidence of chronic Lyme. See the list here.

7) Politics and financial trails. Why is this study coming out now? The National Clearning House has just eliminated IDSA's guidelines for treating Lyme Disease. The verbal and legal sparring between ILADS and IDSA continues as researchers find more evidence that Lyme Disease is the fastest growing infectious disease and cannot be easily cured when not immediately caught. For more on the IDSA vs. ILADS debate, read this article

What does this mean for Lyme sufferers and doctors who treat Lyme?

The fight for awareness continues. I live in a Lyme-endemic area yet there are doctors in my vicinity who know very little about treating Lyme Disease. In fact, one recent doctor, upon hearing me talk of a Herxheimer's Reaction, looked on in horror as she announced, "But that's an anaphylactic reaction." Oops. 

Those of us with children are wary of telling nurses and doctors that our kids are on long-term antibiotics for Lyme. After years, we have found medical practitioners who are knowledgeable and trustworthy enough to treat us. But even these doctors are endangered by policies that would make it inconceivable to give more than a two-week supply of antibiotics. Furthermore, insurance doesn't unilaterally cover all costs.

A recent Boston Globe editorial attempted to discredit a legal movement to get insurers in Massachusetts to cover expenses attributed to chronic Lyme Disease. The opinion-based piece argues that "the proposed mandate isn’t backed up by existing science." Right back at you. Check out over 700 pieces of evidence.

And don't tell my children that our country is so far behind that we don't recognize Lyme Disease when the evidence--double-blind, placebo-controlled studies--exists. There's a reason that Lyme Disease is called the new AIDS. How many more years will it take until the science, the treatments and the medical community unite to actually cure people inflicted with Lyme? 

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?

 

Thursday
Jan072016

When Life Invades Art

I'm conducting poetry workshops with my fifth grade students. We read poems, feel them, breathe them, write in the style of them or write wherever the inspiration leads. I often create alongside my students. This poem was written in the style of the Carl Sandburg poem 'Who Am I?'. I often find my teaching work to be nearly meditative; my home life and my own fight with Lyme don't enter the classroom while the students are there. But sometimes, life invades art.

Kindly do not reprint without permission.

 

Who Am I?

 

I am the hissing wisp of smoke

that slithers into your nostrils while

you sleep;

I am the jabbering, pulsating trepidation

that shrieks whitely with no

sound at night, jaws cracking.

I hunger for your life.

 

I deform the expectations and dreams of multitudes

as I smother the exuberance of youth.

I stand with barbed boot on your heart with

another spike in your neck

hunting each minute

by seeping minute

withering away the fresh apple of your brain.

 

I cannot and will not be contained.

I am Disease.

 

L. K. 2016

 

Page 1 ... 4 5 6 7 8 ... 32 Next 5 Entries »