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Life Lessons Learned

by Ashley van Tol  •  July 29th, 2010  •  4 Comments »  •  Ashley's Blog

“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…

by Eric Rutulante  •  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

by Ashley van Tol  •  July 27th, 2010  •  2 Comments »  •  Ashley's Blog

• 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.

Ulster County Lyme Disease Support Group July Meeting

by Eric Rutulante  •  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!!

Social Retardation – Symptom of Lyme? Or Result?

by Eric Rutulante  •  July 25th, 2010  •  15 Comments »  •  Eric's Blog, LymeBites Blog

Slowly, with time, I’m finding myself less and less able to be “okay” in social situations.  It’s this damned disease.  Those who know me know I love to have a good time.  I’m generally the life of the party, and I usually am the one bringing everyone together for this or that.  We used to joke I was like Julie from the Love Boat, the cruise social director, for my group of friends.

Then I started getting sick.  Before I knew what was going on, I knew my body was shutting down.  I blamed it on my job a lot, at the time I was in a traineeship that required crazy hours and unbelievable amounts of stress.  Now I realize the Lyme and co-infections were taking over my body.

One of my best friends of all times is here in NY this week (with her 6 beautiful kids).  Her mom has a summer home up here in the mountains, and our mom’s are inseperable when she’s up here.  I went the other day to spend the afternoon with this friend, and the entire 3 hours I was there all we did was talk about Lyme.  I felt so bad after I left that nothing else was talked about.  She was asking question after question and I was answering them, it wasn’t as if I was just rambling on and on about Lyme.

I tried to think about that over the past few days, as I’ve found myself in other social situations and realized I’ve become the equivalent of a social retard thanks to Lyme.  After being sick this long, my life has revolved around this disease.  When I see people, what’s the first thing they ask me about?  Lyme.  When I meet new people, what’s usually the reason I’m meeting them?  Lyme.  When I meet new people through old friends, what’s usually the reason we’re introduced?  You guessed it, Lyme.

A good post would now go into something deeper explaining this and giving a reason and maybe an answer.  So maybe this isn’t a good post.  Maybe this is just my platform to complain, that yet one more thing Lyme has taken away from me…my ability to be social.  Or at least, social the way I used to be.  I miss me.  I’m not gonna lie, I can be  a LOT of fun.  I can make myself laugh so hard I’ve actually forced food to come out my nose.  It’s one thing if someone else does that to you, but to make yourself blow food out your nose from laughing?  Well that, is a skill.

I have a lot to do today.  I don’t have time to wallow in self pity (darn).  I don’t have time to ponder the universe, and my place with Lyme in it (good).  I don’t have time to go practice being social by being with friends (relief).  I have to focus.  In the grander scale of things, this is nothing in comparison to everything else going on in my life caused by Lyme.  My life is unraveling as if my life were a ball of yarn and Lyme was a crazy kitten.  Not being able to be the life of the party pales in comparison to the toll this disease is taking on all the other parts of my life.

I know I’m not alone in feeling this way, we all go through it.  I’m nothing “special” because I feel that way today.  It is what it is (my most hated expression).  But now I’m thinking, why can’t we make what it is, be something different?  I guess it’s all in our own hands to do what we can do with this disease.  Today, I’m going to find a way to make the expression be “it is not, what it is” or better yet “it is what it is not”.

Join me?