But ask my friends, or any roommate I’ve ever had, and they will tell you I am fascinated by natural disasters.  You can bet I’ll spend a good portion of the next few days attached to the weather channel and TWC.com monitoring the progress of Hurricane Earl.

My other issue is that since it was time for a male name starting with E for this hurricane, I don’t see why we couldn’t have used Eric instead of Earl.  No offense to any Earl’s out there, but I like Eric much more than Earl.  And if Hurricane Eric was approaching the east coast, it would allow me with a lot more puns, jokes and comments to make about it.  But Earl?  I got nothing.

Okay, now that I’ve completely distracted you with talk of hurricanes let me get back to my original point of this post.

Support.  I’ve been thinking a lot today about support.  Not child support, not life support, but Lyme support.  It never ceases to amaze me how many new “Lymies” are joining our forces every day.  Having such a great online support system is quite amazing, but it also comes at a cost.  Eventually you find that everything you come across has to do with Lyme disease, and you reach a point where you want to NOT talk about it.  You want your life to not revolve around Lyme disease (even though it does).

I’m so grateful that the support I get from the online community is not just about Lyme.  I’ve received text messages from 14 people today.  6 of those people are from the Facebook Lyme community, and I’ve never met them.  The other 8 are people I know in person, and 5 of them have Lyme disease.  Out of the 14 messages I’ve had today, only one even mentioned Lyme disease.

My relationship with many of these “Lymies” has turned into something beyond just Lyme disease.  They’ve become *gasp* friends.  That doesn’t change the fact that the support of this disease is so abundant on Facebook, Twitter and other social media sites.  But it also points out that many of the people in our circle of “support” with time become more than just another name with Lyme disease.

I encourage you all to take full advantage of the support that is out there.  But like anything in life, use your brain and your instincts.  We are just as much a target for people marketing their “cure all’s” or miracle remedy as anyone else with or without an illness.  I don’t trust anyone just because they have Lyme, know someone with Lyme, or have some involvement with the disease.  I trust those that give me a reason to trust them.

So please, take advantage and use the wonderful resources that are out there for us, but also use your brain (which I understand can be hard when Lyme has a hold of it).  I don’t know where I’d be without the friendships I’ve made along this journey with Lyme, through the resources and support available.  Now some of those friends are the ones who make my life so complete in this hurricane of a disease (and I think hurricane is a very appropriate description of what Lyme is like).

And now we’re full circle back to hurricanes.  I’d write more but I gotta get back to the Weather Channel and see what what’s changed in the last 2 hours.

I’m really bad about eating. I rarely feel hungry and it is often 11:30am or even 1:00pm before I decide I had better eat. I typically have lunch, dinner and sometimes an evening snack. I still eat plenty and I’m even starting to put on weight again (a good thing in my case).

The doctor’s response was not what I had hoped for.

“Ashley, you can not skip breakfast.”

That wasn’t all…

“You need to eat something protein based every two hours.”

Holy Crap! I’m going to need a personal assistant to make sure I eat all those times!!!

My not being hungry is apparently a mini-malfunction with my system. My brain isn’t getting the message that I need to eat. This makes a lot of sense when I think about it. It is usually symptoms not hunger pains that tell me I need to put food in my belly.

The prospect of eating something every two hours is daunting. What am I going to eat? I can hardly figure that out now and I’m only eating twice a day! First breakfast and second breakfast don’t sound very appealing when you are use to skipping breakfast all together.

I wonder if my Chlorella counts? It says right on the bottle; Chlorella is a natural food. Serve for snacks, dissolve in water for drinks.

Can you imagine your friends reaction if instead of a bowl of nuts or M&Ms you put out a little dish of Chlorella! I don’t even want to think about the reaction to their insides, which presumably are not accustom to the likes of Chlorella.

I have a feeling Chlorella isn’t going to fly with my doctor either. I am going to have to adapt to yet another challenge. I know that it is for the better, even if right now it just seems like a major pain in the @ss.

Be sure and check it out, and share with your family and friends.  We are continually updating it with new info as we get it, and our goal is to keep this as a valuable resource for the Lyme community.  We appreciate your support!!

Learn About Lyme Website

Right now I am in the San Francisco Bay Area. I come here at least once a month to see my doctor who I love and keep trying to convince to move to Tahoe. He loves the outdoors and skiing. It would be perfect an my life would be so much easier!

Getting to the Bay Area is the first hassle. It’s about a four and a half hour drive. I often have to drive myself because my husband has to work two jobs to not even be able to keep us afloat, poor guy has worked 27 days in a row this month already. When I drive myself I always do fine for the first two or three hours. After that, honestly I shouldn’t be behind the wheel of a car. My cognitive function drops dramatically.

I arrive exhausted and typically get greeted by my 18 month old niece, who I love to pieces, but that means a nap is not an option for Auntie. My family loves me and they understand that I am sick. They do not understand my needs.

Luckily for me I didn’t have to drive myself down this month. Unluckily that means I don’t have a car. I greatly appreciate my grandparents letting me crash on the couch. Their generosity would is astounding, my sister and her daughter also currently live here, as does a cousin who just started at a local college.

So that is two senior citizens, a toddler, a single mother who works ridiculous hours, and a 6′3″ 300 pound teenage football player. The refrigerator is full, but trust me there is nothing for a Lymie to eat in there. I’m not even going to share with you what I have eaten today, you would be horrified!

I am glad I got the ride but it also means an extended stay in the house of chaos. Teenagers go to bed late and grandparents wake up early! I’m scared of dinner, although it can’t be much worse than lunch.

When I have my own car here at least I can go buy my own food. In my grandparents eyes I am still a child who does not know better. Trying to convince them that I don’t eat anything they have would seem as illogical to them as my trying to convince them the sky is green not blue. Facts are facts and according to them their food is fine and healthy for everyone.

Have I mentioned that I can’t drink the water here? There is so much chlorine in it sometimes I breakout in a rash from taking a shower! I gerenally don’t bother taking my pills when I am here either. There is no where to put them, everyone has questions and opinions about what I am taking or should be taking and why am I seeing that quack doctor? I should make an appointment to see their GP, she is wonderful. Right thanks for the advice.

I brush it all off, cast it aside and wish that my brother lived closer. Visiting him is exactly opposite. He loves when I come, I do all the shopping and cooking. He sleeps til 10am too!

On the plus side when I come here I get to see friends. Last night I went dinner with five other amazing women, all Lymies. It was wonderful and makes staying in the house of chaos totally worth it. I also will get to go to my favorite support group meeting tomorrow night and see most of these ladies again and even more friends. Grandma gave me frequent flyers miles to book flights to New York for my husband and I to attend the Turn the Corner Gala in November. I also have to admit that I love seeing my niece, it makes me feel very special that she screams her little head off whenever I leave the room.

I suddenly have this theme song running through my head so I changed the title of the post-

You take the good, you take the bad,
you take them both and there you have
The Facts of Life, the Facts of Life.

And that seems to fit the way I am currently feeling perfectly.

Part of what Ashley loves to do is to help do fundraising projects for not-for-profits.  At this time neither Lymenaide or LymeBites are not-for-profits, so we joined forces with other Lyme organizations in May to raise money to do the PSA’s.  But beyond Lyme Ashley took up a cause in the past few months with the Gulf Spill.  She began working with Nani, another team member and craftivist, and began upcyling projects to raise money to help with the Gulf.  We are kicking off another upcycling project this fall to benefit Lyme disease, and we’re really excited with all she and Nani are doing for that.

Ashley created another persona for her upcycling projects, and you can follow her adventures on her upcycling blog Ash’s Upcycled Blog.

Right now she is in the middle of a very exciting giveaway, where you can choose your own bag!  You can enter as many times as you like, to find out how to enter and read more about it you can check out her post on the project Choose Your Own Bag Giveaway.  I encourage you all to check out her amazing stuff and enter the upcoming giveaway.  Her products are incredible, individual and make a great gift for your wife or girlfriend (for all you guys out there!!!)

You can also follow Ashley’s upcycling on Twitter @upcycledbyash as well as on Facebook at Upcycled By Ash Facebook Page.

Make sure to enter as many times as you can and increase your chance at winning the bag you choose!!

Way to go Ashley on such a great project and on the giveaway.  I already have picked out who I’m going to give it to if I win!