Archive for July, 2010

Candice’s 25 Reasons Why Being a Lyme Patient Automatically Makes You a Badass

// July 30th, 2010 // 16 Comments » // Candice's Corner

P1000637.JPGEvery once in a while I pause for a moment, take a step back, and look around me. After 5 years of illness and 3 years of living the life of a Late Stage Lyme patient, the routine that I call “life” has come to be so familiar that I don’t often stop to think about how obscure it may seem to an outsider looking in. A few days ago, after arriving home from my weekly 6 hour jaunt to the doctor, I found myself unloading my bag of over 25 medications and supplements onto my designated medicine shelf in the kitchen. My eye caught a glimpse of one of the ingredient labels, which boldly asserted that whatever supplement it happened to be was a proprietary blend of bovine liver and ovine spleen, amongst other typically repulsive ingredients. Another sported a bright red label warning that it caused severe drowsiness and the user should not operate any heavy machinery, and that it may or may not cause kidney related complications. I didn’t even blink.

When I was finished unloading, I stepped back and peered around my kitchen. There were medications strewn all over the counters, and a cabinet sitting in front of me specially constructed to shelf my many bottles of pills. Purple “seizure-proof” glasses sat beside an overused blender on the counter, a spot that was often shared with a vegetable juicer. I knew the fridge beside me housed more produce than most people use in 3 months, and the cupboards around me were full of products all stamped with “gluten free” labels. Most folks my age would now run off to call up their friends to see if they wanted to meet up after class for a yogurt and a chat session. Me, I needed to lay down on the couch before I got back up to make a pot of Quinoa. It’s been over 10 months since I’ve been able to leave the house to do anything besides go to the doctor. I shook my head as I sunk into the couch,
absorbing all of this. I sighed. “My life is weird.”

At this point, I could have had a pity party. Instead though, I smiled. I thought about how cool some of my experiences have been, despite how weird they truly are, and how proud I’ve been of myself for making it through some of the outlandish, yet astonishingly horrific things that have happened to me and to my body. I decided that this all doesn’t make me weird. I think it makes me a badass.

One of the coolest (and possibly weirdest, to some) things about this disease is that it has lead me to meet other patients from around the country that are fighting their own off-the-wall, but intensely treacherous battles themselves. I’ve heard some pretty harrowing stories that have left me reeling in both astonishment and admiration. Lyme patients are pretty badass.

While laying on the couch, reflecting on my journey thus far, I began compiling a list that illustrates why.

25 Reasons Why Being a Lyme Patient May Automatically Make You a Badass4843954771_bc569b2265_m

1. While some people have a comic book collection or collect rare stamps, you collect infections, and happen to have more than a loaded petri dish.
2. You take more than 55 pills in one day, and can swallow 6-10 at one time.
3. When you fill out a “symptom survey” at the doctor’s office, you begrudgingly check off 47 of the 60 symptoms listed. If you were being completely honest with yourself, you’d probably check off 52.
4. You’ve opted to have a portacatheter surgically placed in your chest…while you were awake.
5. You’ve given so much blood at one given time that the nurse had to switch veins because the one in use “dried up”.
6. A surgeon has said “Oops” while performing surgery on you…and you were awake to hear it.
7. You’ve swallowed a camera, drank radioactive dye or have been injected with something that temporarily made you glow.
8. It has been proven that your stomach attempts to digest backwards, and food magically travels upward rather than down.
9. You’ve been able to fill an entire day with meals despite having more food allergies than you can count on your fingers and toes….and your Mom’s fingers and toes.
10. You’ve peed just about every color of the rainbow, except blue.
11. You’ve juiced more than 7 vegetables at a time, and drank it. You have the tomato seeds on your ceiling to prove it.
12. Your spleen and/or liver has blown up, much like an inflated balloon.
13. Most girls don’t leave the house without making sure their lip gloss is safely tucked into their purse. In your purse, you’ve got an epipen resting next to your lip balm and a mask folded up by your sunglasses.
14. Your liver enzymes have elevated to 10 times what was considered within the “normal” range, and you never once puked.
15. You’ve had a head to toe rash which elicited a “whoa” from a doctor.
16. You’ve been diagnosed with a condition that nurses actually have to ask you how to spell.
17. You followed orders without question when you were told to shoot ozone in places where you never imagined it’d belong, or when you were informed to use coffee in a way that is rather unconventional, to say the least.
18. You find yourself tapping your finger to the beat of your heart palpitations.
19. You’ve had injections of liquid thicker than maple syrup shot into your stomach, thigh, lower back, or in regions you’d rather not disclose, and you didn’t even cry…or receive a lollypop.
20. You’ve blacked out in the bathtub or in the shower, and you didn’t drown.
21. You had your first colonoscopy before your grandparents had their first colonoscopy.
22. You’ve had an IV bag full of something that an average person would never even consider injecting into their veins, nor will they ever have to.
23. While watching Grey’s Anatomy, you realize that you have the same blood pressure as the patient who’s excessively bleeding on the screen.
24. Your heart rate has either been half of what it should be, or double what’s considered safe, but you still managed to get up and make lunch.
25. You’ve been sick every day of your life for more than 4 years and still manage to be optimistic enough, and brave enough, to wake up every morning and do it all again.

So if you ever find yourself feeling like an outcast, or “weird”, or as though your life belongs in a sci-fi movie, just remember that what you endure and the way that you have to live your life makes you both strong and courageous. And if you ever start to feel scared or unsure if you’re able to do this, just remember that you’re a badass, and that you can.

Life Lessons Learned

// July 29th, 2010 // 7 Comments » // Ashley's Blog

Finding Self

“I couldn’t live with myself any longer. And this question arose without an answer:
who is the ‘I’ that cannot live with the self? What is the self?”

-Eckhart Tolle

I use to go to a Lyme disease support group once a month. I really enjoyed the group. It was there that I met Alix and Kim from SpiroChicks and Scott Forsgren, the Better Health Guy, as well as a myriad of other Lymies who I felt a camaraderie with.

Over the winter I moved and I hadn’t been able to make it to a meeting again until this past Tuesday.

The topic was the Mind-Body Connection. One of the ladies in the group had read the book Mindsight by Daniel Siegel.

Siegel combines Western neuroscience with Eastern meditation in an exciting exploration of how a troubled mind can right itself. Drawing on current science and case studies, Siegel, a clinical professor of psychiatry at UCLA School of Medicine, reinforces the idea that the power of reflection allows us to approach, rather than withdraw, from whatever life brings us.

The book itself sounded interesting. I have read about how stress and distress can make you physically ill. This is one of the things I explored with a psychotherapist before I was diagnosed with Lyme. She agreed it was an important aspect but she knew that there was more to my illness than just this. Gotta love the shrink who tells you, “You are sick, but it is not all in your head”.

It was the discussion that was opened up by the topic that had a profound effect on me though. The Self and the importance of Clan to your healing.

I was stunned by the realization that I give no time to my “Self” and I don’t have a Clan.

The Self-

You may call this the spirit or soul, to me it feels right to call it the Self. What is the Self? This is the true you. The brain is an organ and the body is a vessel but neither is who you are.

Where does the Self exist? I have no idea. To be honest the whole idea is more than I can really comprehend. It is like the question, “Where does the Universe end?”. You know that the universe doesn’t end; it is everywhere and forever. At the same time you can’t really visualize that as reality.

Some people believe that the Self exists in the heart center. This feels right to me. Not only does it feel right, but feeling this makes me feel more grounded. I spend a lot of time living in my head. Living in that state makes me feel disassociated from my body, or maybe it is more than that, I am disassociated from my Self.

I am always trying to work things out, to figure and to fix. I rarely if ever take the time to just be and to accept.

You are probably asking what in the world this has to do with my health. By letting go of the frantic workings of my mind; the worries, the fears, the obligations… If I can just stop, just be, I feel myself relax, my mind becomes calm. The stress and the worry melt away. Miraculously things become clearer, my mind can function better. There is no doubt that this is a much better, much healthier state to be in. I need to learn to connect with and respect my Self.

Clan-

I have a lot of friends… on facebook. I have a good family, we all care about one another.

This is not the same as having a “Clan”. A true clan is having people you can depend on, who understand you and accept you. People you can open up to and really share your life and your feelings with. A Clan is more than just a few people, a Clan is a large functioning social network. The Clan needs to include people who exist physically in your life, not just online.

To be honest, I don’t know if I have ever had this in my whole life. Sadly I have always prided myself on not needing anyone. I thought I was strong. Now I can see that “strength” was actually fear and my pride was a wall to keep me from getting hurt. I realized this Tuesday night when the LLMD who facilitates the group told us to ask for answers from our hearts not our heads.

As we continued to talk about Clan, aura and energy came up. Recognizing the people in your life who fill you up and those who are toxic. We need to surround ourselves with people who give us energy and to avoid those who steal it.

This is a really hard realization to face. What do you do when you know without a doubt that your relationship with best friend or your family members are toxic? Can you really give up those relationships?

I remained completely open as the meeting went on , but I was a little in shock. I have some major things in my life that I need to work on. Pills and potions aren’t going to cure me alone. I need to take an active role in my healing. I thought I was but now I realize I was going about it all wrong.

I’m often commended for my positive outlook and for not letting this disease or life get me down. It’s true, I don’t, another thing I have always been proud of. Unfortunately what I realize now is that even here I am hiding behind that wall. Fooling everyone including myself. My attitude has come more from avoidance than truth.

So what do I do now? I am “little girl lost”, I don’t know my Self and I don’t have a Clan.

Finding Self, I know how to do. Sticking with it is the hard part. I’ve had glimpses of my Self in the past. Sometimes the truths there are hard to accept. Perhaps that is why I have always given over to my mind which has allowed me to avoid the realities of accepting what my Self has to say.

As for finding a Clan, I have no idea where to start. I don’t work and I’m currently not the active person I use to be. Where am I supposed to find these Clan members? And then there is the fear of not being accepted. This is an issue that stems from my childhood and teen years. Suffice it to say, kids can be mean. You know that elementary school comeback “I’m rubber, you’re glue, what ever you say bounces of me and sticks to you”? I never had that rubber armor. I was just glue. Everything rubber said stuck to me and added to that wall.

I am determined to break down my wall. I can see how it is negatively affecting my life. I can also see how much fuller my life could be without it and how that in turn would positively affect my health.

Just A Glimpse…

// July 28th, 2010 // 6 Comments » // Eric's Blog, LymeBites Blog

…at a day with Lyme when it comes to meds and supplements.  Many of the supplements, herbs, antibiotics, vitamins etc. can’t be taken with each other.  Or they have to be taken within so many hours of each other, or food.  I’ve recently added more things to the mix, all that need to be scheduled.  It has taken me the last hour to plan out the next 24 hours of meds.  I then have to set alarm’s on my iPhone for each one, telling me the time and what to take.  It’s 2am right now, I’m going to bed as soon as I type this up, but I wanted to give just a glimpse at what it’s like to live with this disease, and treat it.  Please note, I actually take less pills than a lot of Lymies do….so remember, this is just an average day in fighting Lyme.

7:00am Alarm goes off for something I have to drink mixed with juice.

10:45am Alarm goes off to make sure I’m awake in order to have the full two hours I need to function in the morning.  It takes a while to get your arms and legs, let alone your head to work.  That mixed with the effects of so many meds on the tummy turns the first 2 hours into basically one long cold splash of water against your fact trying to get moving.  But if I’m not up by 11, I can’t take my next meds at the right time, which then throws off the entire day.

11:30 Alarm goes off for first probiotic.  They are lozenges, and have to be taken 30-45 mins before any food, drink or medication

12:00 Alarm goes off to take daily pills.  This amounts to 29 pills, supplements, vitamins etc.  I cannot eat or drink anything for one hour after taking these meds

1:00 No Alarm, but I can eat and drink finally.

2:00 Alarm goes off for second probiotic of the day, again…nothing to eat or drink for 30-45 mins afterwards

3:00 Alarm goes off for mid day dose of supplements (this only requires 2 pills)

5:00 Alarm goes off to take second dose of med that needs to be mixed with juice (must be home for this, or have cooler with ice and the drink pre-made in it if I am out of the house)

9:00 Alarm goes off to take 3rd and final probiotic of the day, and once again….nothing to eat or drink for 30-45 mins afterwards

10:00 Alarm goes off to begin IV infusion, this lasts for one hour

11:00 Alarm goes off to take night meds.  This consists of 19 pills

12:00am, by this point the nightly meds should kick in and anywhere between then and 2am I will fall asleep

Please note that throughout this crazy schedule you have to factor in Aleve, Advil, pain killers, anxiety medicine and Benadryl…all as needed.  What I end up needing all depends on how the day goes.

It’s brutal to be a “slave to the clock”.  But it’s what we have to do to stay alive, get better, maintain our health.  You always hear how many pills we have to take, and see pictures of them, but now you know what one person’s day is like with his meds and what it requires to do it properly.  You miss one thing and you can mess up the entire day.  I share this with you to give you a glimpse into the world of living with Lyme.  If you have Lyme, you already know all this…but for all you family and friends, here is your glimpse.

If nothing else, use this as another reason to strengthen your resolve to be aware of Lyme disease.  Learn the symptoms.  Check for ticks.  Learn about proper testing.  Save your liver the torture of what it goes through every day when you fight Lyme.

I’d stay on my soapbox a little longer, but as you can see….I have to wake up in less than 5 hours to drink my medicine, though I can go right back to sleep after…it’s a long, tough trip the 20 feet to the fridge and I better get to bed now.

Be well, healthy, cautious and happy.  Live your life, don’t let your life live you.  (Wow, that was deep…where the heck did that come from?  It must be one of those 19 pills I took for bedtime speaking.)

Udi’s Gluten Free Sweet Treats

// July 27th, 2010 // 2 Comments » // Ashley's Blog

Lemon Streusel Muffins

I recently had the opportunity to sample Udi’s Gluten Free Foods line of muffins and cinnamon rolls. Muffins are one of the foods I’ve missed most with my gluten free diet so this was quite a treat!

Saturday morning my husband and I made up a platter of muffins a frosted cinnamon roll and mugs of Teeccino (a caffeine-free coffee alternative). It was a warm sunny day so we decided to take our amazing breakfast outside.

I realize not all Lymies eat sugar, but many do. I hardly at any sugars for the first year of my treatment. My biggest treat was a couple a squares of 85% dark chocolate. When my digestive issues got under control I did started eating sugars again, but I am careful about moderation. If I overdo it, I pay for it!

Udi’s products are gluten free, dairy free, soy free and nut free.

What we tried-

  • Lemon Streusel Muffins
  • Blueberry Muffins
  • Double Chocolate Muffins
  • Cinnamon Rolls

It was quite a satisfying breakfast. It felt so novel to be eating muffins after going so long without them. So many gluten free products look good but fail on texture and taste. Not so with these products.

What we thought-

All the products look and feel like the real deal. I highly doubt anyone would even know that they were gluten free. My dad came to visit before we finished all the cinnamon rolls. He hates all my gluten free foods and never holds back from telling me how terrible they taste. I didn’t tell him the cinnamon rolls were gluten free and he didn’t notice anything suspect about the taste.

My husband and I both agreed that the Double Chocolate Muffin was the best. It had the best flavor and the texture was the best of all the products. The chocolate chips throughout really make these great muffins.

My second favorite was the Blueberry Muffin. Like most blueberry muffins, I wish it had more blueberries, I like a lot of berries! My husband’s second favorite was the Lemon Streusel Muffin. He thought it had better flavor than the blueberry muffin. I agree that it had more flavor but for me it was too lemony. Both muffins had good texture but it wasn’t quite as good as the Double Chocolate Muffin.

The Cinnamon Rolls are yummy too. They aren’t as ewie gooey as fresh cinnamon rolls but the texture is good and the frosting adds a super cinnamony taste. I love cinnamon so this was perfect for me, my husband thought it was a little too much cinnamon flavor

None of the products taste like a sorry excuse for their gluten counterparts. They are all good when it comes to taste and texture.

Platter of Yummy!

You can find Udi’s products at Whole Foods Market and at many Natural/Health Foods stores. Some larger supermarkets do carry the products. You can also order Udi’s online from their website- http://udisglutenfree.com/products

If you are interested in Teeccino, the herbal coffee alternative I mentioned, here is the link to their website- http://www.teeccino.com/

Ulster County Lyme Disease Support Group July Meeting

// July 25th, 2010 // 1 Comment » // Support Groups

Hey everyone, just so you know the Ulster County Lyme Disease support group meets every 4th month in July at 6:30 at 84 Zena Rd in Kingston (Hudson Valley Sudbury School).  This is the monthly schedule, though I will try to keep the info up to date each month on LymeBites.  For more info please contact March Gallagher, the leader of this support group at march@hvc.rr.com.

JULY MEETING OF ULSTER COUNTY LYME DISEASE SUPPORT GROUP

Wednesday, 6:30 pm at the Hudson Valley Sudbury School

84 Zena Road

Kingston, NY 12401

I will be there, come and join the rest of us Ulster County Lymies!!