Archive for January, 2010

Nothing Can Stop Me Today

// January 16th, 2010 // 3 Comments » // LymeBites Blog

I set out this morning with a long list of what I needed to accomplish today.  What needed to be packed, what needed to be sorted and what needed to be cleaned.  A big day for me is 3 hours, so I gave myself a 5 hour window to get this accomplished, allowing sufficient breaks in between to rest my body. 

Within the first 5 minutes of beginning today, one of my knees gave out.  I could stand, but I couldn’t bend down or put weight on that leg.  After 8 months I’m beginning to learn to adjust to the curve balls (that’s a sports analogy for those of you confused) that Lyme disease throws at me.  My immediate thought was that I would get nothing done today if my knee wouldn’t work.  But I quickly replaced that thought with my new plan.  So I grabbed my water bottle, a box and a garbage bag, plopped my butt down in the middle of the living room floor and spent the next hour scooting myself around on my butt packing things from the floor. 

Maybe that’s why I got a surpring amount done in such a short time.  Perhaps walking is what’s been slowing me down all along!  I had to laugh though thinking of how we do adjust to the illnesses we suffer from.  While striving for healing, comfort or relief of what ails us we have to find ways to keep going in our daily lives. 

So what are some of the funny or crazy things you do, or have done with your illness to adjust and be able to maintain some form of normalcy in life?  Post a comment below and let us know, I’m sure we’ll get some good laughs from it.

I May Be Going Slow, But At Least I’m Moving

// January 15th, 2010 // No Comments » // LymeBites Blog

You know the old saying about the road to hell being paved with good intentions, so I have to say the absence for any posts this last week has been because I’ve been very busy paving.  At least my intentions have been good. 

As many with Lyme disease will tell you, the disease is very cyclical.  For the first 6 months or so, every 22 days I’d go through a week of pure stomach torture.  I’d be nauseous, get the spins, break into cold sweats and dry heave for a few days and then be back to my normal (sick) self.  As the disease has progressed (just as I progress in healing, it progresses through my body) the symptoms of these cycles changes with it.  What I’ve noticed lately is that my cognition seems to be cycling like that as well.  I seem to have one bad week every few weeks where the simplest of thoughts are too difficult to think.  Then there are days and times (like yesterday and today) where no matter what my body may be doing, my mind seems to be working.  And then every so many months you have a perfect storm of cycles where they all come together at once and you feel great physically, mentally and without any oppressive fog in your brain. 

The last week or two, until yesterday have been pretty rough cognitively.  My memory has been worse, the smallest of jobs becoming overwhelming.  If you’ve ever had a cat you know that petting them at some point they get overstimulated.  It doesn’t matter if it’s good stimulation or bad, at some point they’re going to bite you.  I like to compare Lyme disease to that.  It doesn’t take much to overstimulate a Lymie.  And when you do, whether it’s good or bad stimulation, chances are that Lymie’s gonna bite you.  When your brain isn’t functioning right this happens often and frequently. 

But the good news is that it always goes away.  It may come back again, but at least the symptoms and cycles rotate so no two days are the same.  I’ve learned during these “foggy” times to just put things aside until I can focus or deal with them again.  In the beginning of my illness I would put so much time and energy into fighting it that it would only work against me.  So now I feel like I’m coming out of the fog again, throwing myself into packing and moving (2 weeks from tomorrow I am moving back home to stay with my mother while I continue treatment and go on IV meds) and taking advantage of the time. 

I’m wrapping up a lot of the stuff I’ve been working on for the site, and in between washing cabinets and packing cat toys I will be working on that.  I appreciate all the great comments and feedback I’ve gotten on the site.  As I said in the beginning, the chronically ill is at the helm of this ship so things may move quite slow, but the important thing is that they are still moving.  As I work on my whole story, and other posts and articles about things over the past 8 months it seems so unreal that it has been that long. 

I think back to May, and how I was hoping that what was wrong with me would be something simple like Lyme disease and not MS, and I wonder what I would have thought if I were told of the possibility of STILL being sick 8 months later, with a long way to go before getting better.  In every struggle of life you will hear people saying they never would have imagined they could be strong enough to make it through that struggle.  I think that goes without saying, until we’re faced with it we don’t know what we can and can’t make it through.  And quite honestly, if you’re still alive you’ve pretty much made it through everything so far.  Having Lyme disease would have been the same to me if I were given a glimpse into my future.  I would have told you I would not ever have been able to get through it, at least not with my sanity in tact (and I’m sure the jury is still out on that one). 

But the truth is that I am here, and I have made it this far.  I’m resigned to the fact that I have a long journey ahead of me, with a lifetime of challenges caused by this disease.  But I’m more sure than ever at this point that it’s nothing I can’t handle.  I’ve adjusted to this disease so much already I’ve realized how easily I can adjust when necessary.  The future will be no different. 

With preparing for the upcoming move, having the PICC line put in and starting the IV meds I’m sure the next few weeks will be a bit bumpy, but I will continue to post as much as I can and continue with the development of the rest of the site.  Some of the guest authors will be appearing soon, and I’m excited for the things they have to say.  I will also be sharing information about the Ondamed treatment I’ve been receiving, with info from the nurse who I work with for that. 

I’ve talked to a few other people who have said they didn’t find any help with this treatment, and some who have said they did.  I have to say in my experience so far it has helped out tremendously.   I think the most important thing to know when starting any experience with Lyme disease is that no two people will have the same disease, and therefore no two people will respond to the same therapy.  That’s part of the journey one takes when they get sick with Lyme disease, finding out the many types of treatment, the many types of doctors and practitioners who work with Lyme, and to figure out what exactly is going to work for them.  From there it’s trial and error.  It’s frustrating there isn’t one simple cure or treatment, but the reality is that at this point all we can do is learn together and share our experiences so that others can be able to make educated decisions. 

Just a quick update so you all know I still exist, and where I’ve been with the cognitive stuff recently.  I’m counting on this clearing of the mind to last a while so I can pick up where I left off with my story and share more experiences of myself and other Lyme patients. 

Have a happy and HEALTHY weekend.  There is comfort in unity, and any form of chronic or invisible illness strips us of comfort in our lives, but together we can find comfort.

Virginia Lyme Legislation Introduced

// January 13th, 2010 // No Comments » // Lyme Legislation, LymeBites Blog

The following is a link to Sharon Rainey’s website and the info about Lyme legislation that would protect Dr’s who treat Lyme long term.  If you live in Virginia, or know someone who does, please pass this on to them so they can contact their representatives.  This is important and may help save someone from the torture of Lyme disease in the future. 

Lyme Legislation Introduced in Virginia

Happiness

// January 6th, 2010 // 1 Comment » // LymeBites Blog, Uncategorized

This will also be the year I reclaim happiness, something Lyme has robbed me of in the last year.  I’ve spent a lot of time grieving the things I lost, at times unable to focus on anything but the things I was missing out on by spending months in bed.  Through it all I’ve learned a new kind of happiness.  My level of appreciation for the things in life that really matter has grown enormously.  My relationships with family and friends have changed drastically.  When you fall so low with any kind of illness, the support given to you by those in your life really finds a way to strengthen those relationships.  I know many people who have lost family and friends on their journey with Lyme disease.  Hearing the stories of others in those circumstances has really made me evaluate the level to which my family and friends have stuck by my side through this. 

I haven’t had to spend inordinate amounts of time defending myself to anyone.  Nobody doubts my illness (at least not to my face).  Nobody says things like “just get up and you’ll be fine”, which is what I consider the cheer of the ignorant.  The love and support of the people in my life has been astounding.  From benefits to raise money for treatment, to daily phone calls to ask if I need anything, it has truly amazed me every step of the way.  I now value those relationships more than I ever have before.  With my family, who have been so helpful in so many ways, to my friends who have been more than willing to pick up the slack in our friendship as I suffer memory loss, periods of Lyme induced depression and quickly changing moods. 

There have been days when the pain and lack of sleep have exhausted me to a point where I didn’t think it was possible to fight any longer.  On those days, when I didn’t have the strength myself, I relied on the support of my loved ones to pull me through.  I couldn’t have made it this far without that support.  I now value the support and love of those around me more than I ever have before.  With a life so full of that kind of love, I can’t help but remain happy no matter how treacherous the journey itself may be. 

I’ve often heard people talk about how Lyme pushes you to the point where you have to really decide what it is you are living for.  It no longer is sufficient just to live.  You reach a point of being so uncomfortable in your own body, you really have to evaluate if it’s worth it to continue to live.  It sounds scary to have to face something like that, but in reality it’s an amazing way of taking a deep look at what life really means to you.  What is it that you love about living?  For me I began to realize the things about living that I really loved all involved what was inside of me, not what I had on the outside.  What is inside of me is a lifetime of experiences and people who have made me the person I am today.  What I had inside of me was a lot of things I want to share with the world, and with the people I love.  Things that I wanted to accomplish for, and with my loved ones.  What I accomplished in my life that made it worth living were all things that I couldn’t pack in a box.  As my life so drastically changed because of Lyme disease, I started to realize what was really all I need.  This self examination created a new set of eyes with which to see the world.  Getting up and doing the daily grind was no longer sufficient to qualify as happy, because I had to accept the true happiness in life in order to manage to get up anymore.