Katie Couric is asking for your Lyme stories.

Katie Couric’s talk show, “Katie,” seeks people with Lyme disease to tell their stories on a future episode.

She asks: Have you had, or do you currently have Lyme disease?

What were/are your symptoms? What do most people misunderstand about Lyme? Share your story with us and you may be featured on an upcoming episode of Katie. – See more at: http://lymedisease.org/news/touchedbylyme/couric-lyme-stories.html#sthash.34xx0qaD.dpuf

I couldn’t really answer all of these questions– It would take years, ya know? But this is what I submitted. I hope that even though I most likely will not be on her show, it gave me another opportunity to share my experience with whoever reads it, and now you too.

A few years ago, I was sitting with a therapist, discussing what it is like to care for  a family that all has Lyme Disease and co-infections. She asked if I had ever given myself time to mourn. I wondered why she would ask that. She said that I had lost a life, a marriage, a family-life, one that I had expected to have, instead of one that is predominated by illness, medications, medical debt. She said that not only am I a person with a chronic illness, but I am now the caregiver to three other chronically ill people; my husband, my son and my daughter.
I really haven’t given myself time to mourn, and I don’t think that I can actually grasp what outsiders see me and my family go through on a daily basis. I think it is because I am an optimist by nature (albeit one wracked with anxiety!!) as well as being a fighter.
A very quick version of our Lyme Story  is that my husband was most likely infected in the 1970’s. He was un/misdiagnosed until 2007. We met in 1990 and he passed it along to me, and then I passed it along to my two children, congenitally. He bacame very sick in 2003-4 and was  diagnosed with a variety of psychiatric disorders.
I knew that he didn’t just become Bipolar overnight so as I researched more, I realized that Lyme disease was most likely the actual disorder. He began seeing a fantastic lyme literate doctor who talked to us about the likelihood of me being infected as well. When I tested positive, we had out kids tested. I sobbed as the doctor gave us the results– both of my kids were also very ill.
That was in 2008 and we are still not better. My husband is completely disabled by this and is basically housebound. My kids struggle with being chronically ill teenagers. As for me, its a daily obstacle course of meds (I color code the bottles so everyone knows how many pills to take in the morning and evening), fights with insurance coverage (We paid out of pocket for 6 months of IV abx for my husband until we couldn’t afford to put any more on our credit cards), doctors visits (also not covered by insurance), tracking symptoms, on top of regular life and all while being ill.
But like I said, I am fighter and I will do everything possible to make my family healthy and whole again. I try to spread the word about Lyme disease and my kids and I attended the Lyme Disease Protest and Rally at Union Square last May.
Things have to change in regards to Lyme disease treatment and I plan to make my voice heard.
Thank you!

PSA: Ticks are exceptionally bad this year.

Yes. Ticks are exceptionally bad this year. Full Stop.

And yes. Ticks are exceptionally bad each and every year, but this one seems to be getting off to a quick and hard start. A few weeks ago, I took my dog into the vet’s for her Lyme vaccine. The vet reminded me that the vaccine is not 100% effective and to make sure we use Frontline year round. She also said to be very careful, that they have been removing ticks from dogs at an alarming rate and have been doing so non-stop since January. Not only have I been hearing about ticks being on dogs, but I am  being told by family and friends that they have been either been bitten or had one crawling on them many times over the last week or so. My dad just called me to tell me he has a tick attached and is off to the doctor to have it removed and tested. Not much can scare and worry me like a tick bite can.

Since it is just the beginning of the Spring/Summer season (it’s been darn cold here in NJ considering it is May!)I feel compelled to share some PSA-type information.

The best advice I can give to someone who has been bitten is to SAVE the tick!! Remove it carefully without squeezing or pinching the tick.  There are Labs all over the country that you can send ticks to to be tested to see what infections that carry. You can Google Tick Testing Lab, or here is a link to one that I found: Tick Testing.   The prices might seem high, with the cost averaging $60-$75, but in my experience, that is much less expensive then all of the testing and treatment you might need otherwise. Once you know what diseases the tick carries you will be able to more accurately plan treatment.

The next best bit of advice is to ask for a prophylactic dose of antibiotics, usually doxycycline, from your doctor. Some doctors are willing to prescribe, others might need a bit more coaxing. It is very important keep in mind that treatment of Early Lyme is usually quite easy and successful. It isn’t until the disease become disseminated and chronic that you end up in the hell that my family is in and has been in. Most Lyme literate people believe that enough antibiotics to extend through a full life-cycle of the Borellia bacteria is needed (28 days). If the doctor only prescribes 2 weeks, as is common, see if you can get a refill for the additional 2 weeks. (Disclaimer: I am obviously not a doctor so research and discuss this with your doctor, but don’t let him/her blow you off.) Many people are hesitant to take antibiotics unless truly medically necessary, but again, 4-6 weeks of antibiotics is a better scenario than the 5+ years each of us in my family has done. And we are not done yet.

While not all ticks are infected with Lyme and other co-infections, deer ticks are not the only ticks that carry these bacteria and parasites. Read Know Your Tick Facts for more information.  Common wisdom says that a tick must be attached between 24-48 hours before bacteria is transmitted to the person. However there is evidence that the bacteria is present in the tick’s saliva and can be passed almost immediately to you.

Obviously, prevention is critical as well, because  most  people don’t remember ever getting bitten and very few people actually get a bulls-eye rash. (If you are one of the lucky ones to get a bulls-eye, take a photo of it, with a coin next to it to show its size. Most rashes fade by the time you get to a doctor and the rash is one of the few ways to be “CDC Positive,” and to  get coverage by your insurance company for treatment.”) Always use bug spray. I used to be a all-natural type, and made my own bug spray with essential oils, but now it is “Give me DEET!” There are many different sprays using different chemicals so use what best fits your philosophy. Permethrin is excellent for spraying clothing. I spray a set of gardening clothes that I will use just for yard work. I buy Permethrin from Amazon.

Tick checks are also imperative and ticks gravitate to warm, moist area, like neck and hair, armpits and groin. Keep in mind that ticks– nymphs and deer ticks are tiny- the size of a poppy seed. I always keep my hair pulled back tight when I am outside and will wear a hat sometimes too. Experts say that it is best to wear long sleeves and long pants but when I am doing yard work, I feel that I can sense something on my skin better than if I were wearing long pants. But that is just me.
I know that there is so much more info to share but I can’t think of it all off of the top of my head any more. My brain has decided to shut down, not an uncommon occurrence for anyone with Lyme! The only last bit that I need to share if you get bitten and/or have Lyme symptoms,  is to look for a Lyme Literate Doctor and to get tested at reputable lab such as IGeniX or MDL.

Leave me a comment if you have any specific questions! And please, be careful out there– while it is bad, we cannot let those damn bug win!

 

Dusting, no– Scraping– the dirt off of this Blog.

I guess it is about time. Its only been, oh way too many months to count since the last time I posted. In some ways a lot has changed, in others. Yeah. Not so much.

The family is still fighting the Lyme fight. Except when I posted last, I had one of the 4 of us doing ok. Since then, Caitlyn has had a total relapse.  Scott is holding his own, symptom-wise but his having  some issues with high HHV6 and Lyme titers, which means that his immune system is still struggling. I have been (finally) diagnosed with Babesia, so now I don’t feel so left out. The rest of the family has it and now I get to join the Babs-Club.  Like I wanted to be in that one as much as I want to be in the Lymie Club. *eye roll*

But, it is what it is and as I say, I am a Lyme Warrior, not by choice but because I have no choice . The kids and I are doing our Lyme Warrior Bit on May 10th as part of the Worldwide Lyme Disease Protest.

I am looking forward to getting out there and helping the Lyme Community to be seen and heard. (Ya got that CDC????? IDSA??????)

Aside from Lyme being the core of my life, I am still a scrapping-fiend. It is my SANITY!!!! Oscraps has been my life-line and Therapy Session for a long long time. And I added in a new site to hang out at– MScraps. Both sites have some awesome  sales coming up for iNSD this weekend. Mscraps is also having a Blog Hop that is seriously huge and one of the stops is here!. (its is also a big reason I wanted to get this blog cleaned up a bit. Have to get ready for company!)

Life is hectic in May for me so I can’t promise that this blog is going to published as much as I would like, but this is a start. If I do nothing else, I would like to update the Lyme Journey as I have gotten a lot of comments to do so.

Hope that all of you are great and thanks for ignoring the dust-mice! xoxo

Another Donation Made to Turn The Corner.org

I had an envelope full of  money on my refrigerator for oh, about 6 months. It was definitely from before the holidays…. So with our new fridge arriving yesterday, everything that had been hanging on the fridge door, buried under layers of papers and magnets,  had to be removed. And what did I find? That envelope of money, clearly labeled “Donations Lyme Line/TTC.”

Oops. I had forgotten about the money I had collected from the sales of Lyme in the Coconut. I had sold a whole bunch for holiday gifts, plus some bottles that I had over at the consignment shop. Business has been slow for the Lyme Line since then, but I was really happy to find this “lost envelope.”

I just donated another $27.00, and it feels great. Now that my envelope is empty, I hope that everyone will consider ordering/reordering some yummy body care that helps out a great cause!

Lyme Story

and like Love Story, there is no happy ending.

For now.

I wrote this for to be submitted to Congress regarding health plans. I wanted to share it here as well.

In 1992, I graduated from college with highest honors in two majors. I got married, had two children and decided to be a stay at home mom. I thought I was living the American dream.

In 2004, all of that came crashing down. Hard. My husband became sick and no one knew what it was. Two years and many misdiagnoses later, we found out that it was Late Stage Neurological Lyme disease. It took us another year to find a doctor who could actually treat him.

At this point, he was extremely ill and barely able to work. Between 2004-2007, he missed more and more work. Reluctantly, he went on disability and then, long-term disability. After his long-term disability ran out, we appealed and re-appealed to have it extended. We were denied each time.

Lyme Disease treatment is very tricky and his case was made harder because of two factors: he is insulin dependent diabetic, and he had this disease since childhood. During his treatment, his symptoms became worse. His doctor was able to get our insurance to cover two months of IV antibiotic treatment. Just as he was starting to show improvement, the insurance would no longer pay for this treatment and his IV was removed.

In the meantime, we became avid researchers of this disease. To our surprise and horror, we learned that the Borrelia burgdorferi spirochete that was infecting my husband is a cousin to syphilis. And the spirochete can be passed to others in the same ways that syphilis is, through sexual contact and through the placenta and breast milk. Now able to see that the myriad, yet vague symptoms that my children and I had been experiencing for many years, we all were tested for Lyme and other tick borne infections.

I broke down and cried in the doctor’s office as we heard our results. We all tested positive for Lyme. My son also had Babesia, a malaria-like infection and Bartonella. My daughter also had Bartonella. My immune system had broken down from fighting the Lyme infection and had reactivated Mononucleosis.

Sadly, we were mistakenly relieved at first, believing that this was a first step towards getting better. Little did we know that this was the beginning of a huge, difficult, and stressful battle.

Most Lyme Literate doctors do not take insurance, which means all office visits are paid out of pocket. Each month, another $1000 would be put on the credit card, just for seeing the doctor. Each prescription cost us another $20 a piece. Thankfully, we had prescription coverage for most of our prescriptions. However, for some Rx’s, the insurance would refuse to pay, we would try to appeal, usually with no success. Every trip to the pharmacy would keep my stomach in knots, wondering who’s Rx’s would be able to get filled.

Feeling sicker than ever, we would travel to each of our doctors. My husband and I saw a doctor who was 50 minutes from our house. We were lucky; our children’s doctor is almost 2 hours away.

As we all began to feel worse, I needed to step up as an advocate for my family. I needed to call insurance companies, doctors’ offices, and pharmacies. It became a fulltime job. I was also working a part time job from home, and often that needed to take a back seat to my “health job.”

The school system became another job- advocating for my children’s special needs and situations. They needed to have 504 Plans in place. However, many of their teachers did not understand the severity of their illnesses. I am in constant contact with the teachers and administrators to educate them so that they can better help my children. It seems to never end.

Currently, we are living solely on my part time salary. It was $1000 a month, but due to the economy, it was recently cut to $500/month. I am not able to work outside of the how due to my own illness. We have racked up huge credit card debt, something we had never done before. We have drained our children’s savings accounts. We have had to apply for financial assistance for heat and electricity, Medicaid and free school lunches.

We thought we were doing everything right. We were good people, hard working, wanting the best for our family. Now, we are a statistic.

Our health insurance has let us down. It has kept us from getting the proper care that we need. It has put us into a situation where our future is unknown. It has created stress within my family that no one can imagine.

We will keep fighting. We will keep doing, because we have no other choice.

But we want to be heard. We want people to know that they too could be living the “American Dream,” only to lose it all like we have. The insurance company and pharmaceutical industries do not have our best interests at heart. That needs to change.

Gratitudes March 7 and 8

Oh man! I am feeling so much better than I was earlier this week. That herx was a killer – and since I literally thought I was dying –  I am glad it wasn’t truly a killer 😀

When I am having a herx, I have to keep n mind- the worse I feel, the bigger the die off- so that was a good one. And when the herx is over there is usually a time period when ya feel pretty darn good!

I have a good list of grats here:

• feeling better!!
• the weather- we had an awesome spring day here yesterday. 60* and sunny. We had the windows open and the outdoors called to me. There is not much I can do yard work wise, but I spent the hour just picking up sticks in the yard. There were a lot! But to be outside, getting fresh air was just fabulous!
• Cait had a great time at the quilt show with her Nana and cousin
• A yummy dinner last night- My brother makes the *best* turkey chili and we all chowed down. I make it the same — his recipe — but for some reason everyone likes his better. I like that I don’t have to cook it!
• Lots of coupons- I know how corny can that be? But My MIL brought over stacks of coupons- makes shopping a challenge and i like that!
• re-reading Harry Potter. Yup, starting from the beginning. They just don’t get old or boring. I am picking up little bits and pieces of info that will become important later on. She is a master!
• Yesterday Gary and I played a military wii game that we borrowed from my FIL- Ghosts Hunters? Ghost Fighters? I don’t know,*shrugs* it was fun to play, just the two of us- and neither of us had a clue what to do;)
• DST! As much as I ahte the lose th ehour of sleep, I love that feeling of the longer days! Spring is coming closer!

Enjoy your weekend- there is still quite a bit of it left!

Time flies, doesn’t it?

And I am not so happy about it all that much anymore. What happened to the slow days- when it seemed like it took for ever for Christmas to come, or that summer vacation felt like it lasted a year? Now I feel like I blink, and all of these weeks are gone. I am surprised, but not really that it has been a month since I last blogged here. In my defense , I have been pretty decent about keeping up on my P-365 blog.

The winter days seems long and the same and cold and dull to me.I live for spring and summer! And I wish it would come quicker than it is. But then, I know I’ll feel like more time is slipping by.My kids are growing too fast. Scott went to his first concert with his dad the other night. Slipknot. Yup, who would have thought that the two of us would have raised a head banger! LOLOL! No big surprise I guess.

Cait is almost as big as me too- she is starting to borrow my clothes, and she has a really nice pair of boots I want to get my hands on (yes, they fit!)

But while time seems to be going fast for them, Gary and I are still plodding along in Lyme –Land.It feels like this has been going on for such a long time. We don’t seem to be getting better. I wonder if we will ever feel “great” again. I can’t complain that much, I do get a few decent days in here and there. But they seem to be so far away. It is hard not to worry, ya know?

But you do what you gotta do….. It will all work out. I know it will. As always, I just need time and patience.

Lyme Devastation

*sighs* I should be happy. And I am, it just seems to be hidden under a layers of deep worry, concern and fear.

We had the kids’ Lyme Dr appt yesterday. And Good news!!!! No, great news! Caitlyn is doing fab! She is pretty much symptom free. We are going to continue her herbs and abx for one more month. At our next visit in October, we are taking her off all abx, and continuing with aprrox. 6 months of Cowden herbs. I am thrilled! She has come a long way and is doing great!

So, why the worry and fear? Scott, ont he other hand,is improving, Slightly. He still has so many cognitive deficiencies and symptoms. Our dr feels that by now, he should have had a bigger jump in improvement.  We are trying some new meds, adding in another neuro-toxin detoxifier (say that 5 times fast if your “normal,” just say it if you are a Lymie! *grin*), and we’ll see how it goes.

Hopefully this will go well, and he’ll really make that jump. If not, our dr is considering putting him on Rocephin, an IV abx. 12 is too young for a PICC line. My son– no matter what age– should not have to deal with a PICC line. I know, it might be in his best interest medically…. but I don’t want it!!  Gary and I talked and we are in agreement, we are going to try everything we can to make that an absolutely last resort. Nor are we breathing a word to him, until we have too. So if any of you read this, don’t tell  him LOL!!

I am so exhausted- the worry, the fear, the financial aspect of all this.. it gets to be too much.  But I need to focus on the positive. Caitlyn is the end result we are all striving for, we all will get there. It just needs to be on each of our own bodies’ terms.

Lyme Brain Attacks Again!

If you have never experienced Lyme Brain, you might just think that we are exaggerating. Sure everyone has airhead moments. These are way beyond airheadedness. It is straight into the realm of “what was I thinking? Oh, yeah, I wasn’t!

Yesterday morning, I am doing the routine of getting the kids ready for school. I keep myself on a regular pattern, and I know I have 4 things to do.

1. Kids breakfast
2. Pack lunch boxes
3. Scoop litter boxes
4. Run a load of laundry

I have finished #1 and the kids are eating. I move onto #2. Scott wanted sugar free pudding for snack. I grab one from the fridge, put it in his lunch box. A minute later, I go bake to the fridge, grab one, drop it in his lunch box.Then I do something else for a minute (most likely walk in circles wondering what I am supposed to be doing). I go back to the fridge, look around, wondering where all the rest of the puddings went. I grab the last one, go to put it in his lunch box, and see the other two already in there!!

All in a matter of 5 minutes total, I had put three pudding cups in his lunch box, not even rememebering I had done it all. When I showed Scott, he laughed at the Lyme Brain, but then was bummed out that I realized what I had done– 3 puddings for snack would have been ok with him!

So what are your Lyme Brain stories? Share them if you can remember them hahaha!!!