Archive for October, 2010

Year 2 Begins

// October 30th, 2010 // 1 Comment » // Eric's Blog

It’s the Saturday night before Halloween, a night full of fun, freaks and friends.  Unfortunately I’m left feeling too socially disabled tonight to do much socializing.  A haunted house full of kids, and a party in Woodstock both sounded wonderful, but when push came to shove I couldn’t push or shove myself to either of these functions tonight.  Dressing up was out of the question.  As it was I had a hard enough time putting on sweatpants and hospital socks just to go.  I was all ready to head out the door but just didn’t have it in me tonight to deal with socialization.  It’s okay, it happens.  I’ve know been diagnosed with Lyme almost 18 months, and yesterday was the one year anniversary of beginning treatment with a Lyme Literate Medical Doctor (LLMD).

So a year of treatment and I know myself a little better than I did when I first became debilitated by this disease.  I spent a good portion of that year making plans, RSVP’ing “yes” to things, wanting to be social.  That is my nature.  Before Lyme you could guarantee that on a night like tonight I’d be dressed up, out with my friends, having the time of my life.  Tonight I’m sitting home alone with my cats and 1000 channels of nothing on TV.  The difference is that I spent a good portion of the first year of being sick constantly berating myself for all I was missing out on.  But more than that was the constant disappointment I felt for my family and friends as I would continuously cancel plans at the last minute, be too sick to do what was planned, or else just end up rescheduling time after time.

The other option was I would force myself from function to function, then needing several days to recuperate from simple social situations.  But tonight, I understand the limitations of my body a little better.  It takes a long time for a caterpillar to turn into a beautiful butterfly.  It also takes a long time for a social butterfly to turn into a reclusive caterpillar.

I don’t need to point out what a trial it is for someone to be sick, let alone chronically sick with something so misunderstood and controversial as Lyme disease.  If you’ve followed my blog, or know me personally, then you already know what I’ve been through and the hell it has been.

What I think does need to be pointed out is that the disease not only wreaks havoc on our bodies and minds, but on our entire lives.  This includes socialization, family, friends, hobbies, interests and passions.  What I’m slowly learning is how adjusting to the hell we go through, really changes us.  That’s hard for family and friends to deal with and learn to understand, but more than that it really takes a lot for those of us with the disease to learn to understand.

I make a lot less plans now than I used to.  I understand now that many of the things I’ve tried to do while being sick were just out of my reach, because I was sick.  There comes a point when you have to accept that.  Missing out on all the fun is not easy, but neither is beating yourself up because you’re sick.  Being sick is out of our control, we don’t need to make ourselves worse by feeling bad about the things we can’t do.

When I first realized I couldn’t attend the functions on the calendar for tonight I immediately began a pity party, my natural reaction.  Cursing this disease and the wave of destruction it has left in my life.  But then I took a deep breath, made peace with my decision to stay home in my sweats with my cats and watch TV, read a book, or stalk my friends on Facebook.

It was shortly after that I realized I was okay with the fact that I had to stay home tonight.  I didn’t like that I couldn’t go and enjoy time with my friends, but I was okay with it.  After so many months of the inner struggle I’ve dealt with regarding the social aspect of being sick, I realized that slowly but surely I am making peace with this disease.

Now, don’t get me wrong…making peace with the disease and giving in to the disease are two totally different things.  I’m not accepting this for life in any way, shape or form.  I’m accepting it for right now.  I’m just now starting my second year of proper treatment, and I still have a long road ahead of me.  I’ve made a lot of gains in that time, and tonight I’m proud to say one of those gains is learning to work with the disease instead of against it.

I’m prepared to (continue) fighting for my life as I start the 2nd year of this journey, but I’m also learning to accept the limitations I’m confronted with right now.  It’s so hard to see progress with this disease.  It can be such a long journey that you can’t measure progress on a day to day basis, because progress takes longer than a day.  Every piece of progress I see I hold on to and cherish as a personal triumph.  I never thought in the beginning of my journey that I’d see limitations as progress, but learning to deal with and accept them is progress for me.

Ulster County Lyme Disease Support Group October Meeting

// October 24th, 2010 // No Comments » // Support Groups

Hey everyone, just so you know the Ulster County Lyme Disease support group meets every 4th Wednesday 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.

OCTOBER MEETING OF ULSTER COUNTY LYME DISEASE SUPPORT GROUP

Wednesday October 27th, 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!!

Empire State Lyme Disease Association – Capital Region Chapter November Support Group

// October 24th, 2010 // 3 Comments » // Support Groups


Capital Region Chapter

NOVEMBER SUPPORT GROUP MEETING

@

Guilderland Public Library

2228 Western Ave., Guilderland, NY 12084

(518) 456-2400

Saturday, November 13th

1:00 PM – 3:00 PM

The meeting is free and open to the public.  For additional information, please contact bjmeslda@yahoo.com orkameslda@yahoo.com.

The Empire State Lyme Disease Association, Inc. is a nonprofit charitable organization incorporated in NYS and dedicated to providing information on prevention, diagnosis, testing, alternative medicine and patient support for tick-borne illnesses including Lyme Disease.

I’m Chronically Infectious. Does it Get Better for Me Too?

// October 20th, 2010 // 3 Comments » // Candice's Corner

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This past September, in the wake of the recent gay teen suicides, writer Dan Savage founded a project that has miraculouslycaught fire and has begun to sweep our nation. He has dubbed it the “It Gets Better Project“. His aim was to provide lesbian, gay, bisexual and transgender teens with hope for a better future, one where being who you are isn’t so excruciatingly painful, and where happiness isn’t hard to come by. People from across the country have come out to write and make videos to tell their stories and to share how despite the treacherous times that come with being an LGBT youth, and despite the hardship that comes with being part of the LGBT community, they have led successful lives and have found love, support and happiness.

As I follow this project and whole heartedly support it as a straight alliance, a little voice has begun to speak up in the back of my mind. With each video that I watch, each celebrity that speaks out in support, the voice gets louder. I watch the LGBT community grow and the support for the community expand, and as I rejoice, I can’t help but think of the Lyme Disease community. My mind has become pre-occupied by the recent Late Stage Lyme suicides, and the little voice in the back of my mind has begun to shout:

Sue Baiata. George Strobo. Jonalyn Strobo. Bryan Jacobson. Lindsay.

These are the names of the individuals who took their lives in recent months after battling Late Stage Lyme Disease longer than they ever thought they could or would. No one answered that question for them, or handed them a sliver of hope when they started to lose grasp of their own. Out of respect for them and for their battle, I feel the need to speak out. I’ve always said that in order to overcome this horrid disease, one needs a village. The unfortunate reality is that at this point in time, most Lyme patients don’t have much more than a few family members or friends that care for them and the doctor that has diagnosed them. Many aren’t even that lucky.

Much like the doctors who were treating AIDs patients in the beginning of the AIDs epidemic, Chronic Lyme Physicians are under fire for what they believe and for how they treat. Not unlike AIDs patients once were, Lyme patients are mistreated, abused and neglected by most healthcare professionals. The disease is pushed aside, it’s the elephant in the room, and it’s the epidemic that no one wants to acknowledge. The disease is lacking in research, treatment options and treating physicians, and the lyme community lacks acknowledgement and support. Because of this and because of the roller coaster-like nature of the disease, Lyme patients remain ill for years, or even decades. As their world stops spinning and their lives are put on hold, the lives and worlds of their friends and family around them continue on and they are soon left to fight a relentless battle with just a few people by their side. Many face this battle alone.

There has been a trickle of celebrity support this past year, as actress Candice Accola stood up as an activist and a handful of well-known celebrities came together to film Lyme Disease PSAs. The Lyme Community was thrilled about this rare outreach and support, and we were eternally grateful for the compassion and the effort demonstrated by these benevolent celebrities.

But what about hope?

Dan Savage’s “It Gets Better” project was set into effect in hope to provide struggling members of the LGBT community with assurance that life does get easier. He hoped to be able to provide ridiculed, defeated LGBT youth with the ability to imagine a better future, in an effort to prevent future losses of precious lives. I think that in the aftermath of the Lyme Disease related suicides, the Lyme Community needs that to. I know that for us, due to lack of research, funding and treatment options, our futures are in question.

There aren’t any certainties in our battle. There isn’t enough information out there to be sure what the outcome is truly going to be. Will I ever be clear of this disease? Will I achieve remission? Will I be on medication for the rest of my life? Will I be able to hold a full time job? Can I have children? Will my body ever truly function like it once did?

Lyme-ribbon-on-black

I don’t know. There is something that I am sure of though. It gets better.

Things have been hard for me lately. I’m on a downward dip in this roller coaster we call Lyme. There have been days where I’ve found myself overwhelmed by symptoms and unable to stand steadily on my own two feet again, where the physical hardship and feeling of defeat slightly outweigh my sense of hope. Deep down though, I still know that it gets better. I want others to hang on to that too. I’m never going to stop fighting, and I don’t want to read about another fellow lyme patient who has ended their battle again either. So I’ve set out to make a list. A list of hope.

Late Stage Lyme Disease: It Gets Better.

1. You will find a doctor that that wants to, and knows how to, help you. I got sick at age 16. For 2 years I went in circles in a conventional HMO medical system where I was passed from doctor to doctor, each one either shrugged their shoulders or implied that somehow I could be causing the malfunction that was taking place inside my own body. The summer before my senior year in high school, I became so ill that I was hospitalized. My heart, digestive tract and liver all showed physical, incontestable evidence of being under dire distress. The doctors were alarmed by my physical condition and finally believed that I was afflicted with a physical illness, but still didn’t know what that illness was, nor did they have the desire to keep trying to figure it out. I was dubbed “chronically ill”, and they sent me home, despite the fact that I was 17 and weighed what I weighed in 5th grade, I couldn’t sleep laying down, I could barely stand up, my digestive system was at a standstill, my blood pressure was 70/40 and my liver enzymes had skyrocketed up into the 300s. By the grace of God, after a whole lot of hardship and physical decline, I ended up in the lap of a lyme literate physician. He wanted to help, but my condition was too complex and I my body was to ill to be able to handle the treatment that we attempted to execute. Eventually, the phrase “you’re one of my sickest patients right now”, or the statement “you’re an incredibly complicated case” became uncomfortably familiar to me, as I continued to decline to the point where I was unable to leave my house at all, shower, sit up properly in a chair, or often even rise from the couch.

5 years and numerous practitioners later though, I find myself with a doctor who gives me hope. When I met him, he looked me in the eye and and said to me, “Believe it or not, I have seen patients even sicker than you are right now, and they are now getting better. You can be a functioning member of society again, and I can help you get there”. It’s been an uphill battle ever since he spoke those words to me, but he hasn’t given up, and neither have I.

You will find a doctor that both acknowledges the magnitude of your sickness and knows how to fix it. It may take an excruciatingly long time to find that doctor, but don’t give up looking. It had been so long that I had begun to think there wasn’t a doctor out there who could fix me, or who would be brave enough to try. I was wrong. I still may not be able to venture out my front door, and I still may be a physical mess, but I am sitting up in a chair and typing to you, and I have hope. Someone will hand you hope too.

2. You will find a treatment that doesn’t just make you sicker. For me, 10 days of flagyl equated to a 10 day stay in the hospital. 3 drops of olive leaf extract lead to a night in the E.R. A full month of Sporanox caused Multiple Chemical Sensitivity so severe that I am now unable to leave my house. Thousands of dollars have been spent on pills, potions and powders that now sit barely touched in my hall closet. I have shopping bags full of 5 years worth of bottles that have just one or two pills missing. I was the patient that couldn’t handle anything. The one who’s digestive tract would come to a screeching halt with one wrong move, the girl that would have seizure-like episodes or erratic vital signs just because one supplement tipped her teacart. I tried to remain hopeful through it all, through each widespread rash, gall bladder attack, skewed blood result, erratic blood pressure reading, or emergency room trip, but deep down I wondered if I’d ever be able to handle treatment. Eventually though, I found the doctor that was able to appease my doubts, and I decided to trust him, and I plunged into a treatment that I am proud to say that I am actually carrying out. It’s not by any means easy, but he found ways to help me make it through the treatment that I require, and we discovered that there are things out there that my unstable body can tolerate.

I may have to go at a snail’s speed, and I may have to take it one drop and one pill at a time, but I’m doing it. Last night I stood in the kitchen, as I poured liquid medication into a glass, and marveled at my dose. 3 years ago I had tried this same medication and could only handle one drop at a time. I now take twenty drops at a time, and no one has to peel me off of the floor twenty minutes later.

3. You will meet others that understand. Yes, most of your friends will move on. You may receive balloons, get-well cards and well wishes for a couple of weeks after your initial diagnosis, but after a few years of being debilitated and continuing to be the missing person at holiday gatherings and social events, the person who’s too sick for visitors or long winded conversations on the telephone, friends move forward. They move forward while you’re stuck in place because it’s only natural, and undeniably inevitable. It isn’t their fault. When old friends do check in with you once in a while, it’s hard to know what to talk about since your life is so drastically different from the “norm”. It’s hard to find a family member or a friend to vent to when you feel like you’re dying, or you’re experiencing symptoms or side effects that sound like they could be from a planet that no one from earth has ever visited. I promise though, that one day, you’ll find someone. You’ll be sitting in a waiting room, waiting to see your doctor, and someone will pull your favorite brand of gluten free crackers out of their purse, or you could be lounging in the I.V. room receiving an intravenous cocktail when you and the patient next to you both break out in the same purple rash. You’ll find people to bond with, and they’ll connect you with other people via email or some social networking website. Before you know it, you’ll find yourself in the midst of a web of support, and people who just “get it”.

At first I was hesitant to put myself out there. I thought that it was odd to connect to perfect strangers over the internet or in the parking lot of my doctor’s office, and start divulging the details of my timultuous life. Eventually though, I got lonely. I needed someone who understood what it was like to be a young adult and have to ask your Mom to help you get to the bathroom, or wash your hair in the kitchen sink. I needed someone to talk to who watched as much television as I did, or who I could swap allergen free recipes with or ideas on how to wrap yourself in a castor oil pack without getting the goo all over the couch. Once I let go of all pre-conceived notions, I found myself engulfed in a community full of the most creative, loving, witty, smart and supportive people that I had ever met, and they just happened to be fighting a fight similar to my own. If you find yourself fighting this same isolating battle, don’t be afraid to reach out.

You’ll find someone who, on a hard day, will sit online and chat with you until your doctor calls you back. You’ll find someone who will text you when they know you’re about to undergo a procedure or receive a treatment, just to tell you that when they did it, they survived. You’ll find yourself a group of friends who don’t think you’re crazy for drinking brownish-green vegetable juice every morning, and who love you and accept you despite the fact that you can’t leave the house without a mask on, and you can’t stand up for more than 10 minutes at a time. You’ll receive cards from friends that know just what to say when things are bad, because they can actually fathom how bad it really is, and they know what “bad” really looks like. If you open yourself up to it, you will find support. You will find that even though you’ve been diagnosed with one of the loneliest diseases that exists, you are not alone.

I know it doesn’t sound like much. I’m not running miles or marathons. I don’t even leave my house. But it got better. And, it will keep getting better. One day I’ll visit the doctor and he’ll give me a positive report. One morning I’ll wake up and find that the medications that were causing heavy herxheimer reactions are now making me feel a little bit better. One day I’ll meet up with a few of these amazing girls that I’ve met, and we’ll go to the beach. I may even meet a boy that sees me through my illness, and loves me despite my battle. Maybe I’ll even get married. And one day, my disease will make it onto the map and there will be adequate research done that will both save lives and improve the quality of the lives of those infected.

It’s as Buddha said, “Nothing is permanent”. I don’t know what my future holds, but I know that it won’t look the same as the present day does now. Things will get better. Sure, I will still face hardship. Yes, I don’t know in what shape or form. All I know is that things will improve. Whether it’s in a small way or an earth shattering way, they always do.

So, I challenge you. If you have a story of hope, extend yourself and share it. Sue Baiata, George Strobo, Jonalyn Strobo, Bryan Jacobson, and Lindsay are a few of the sufferers that could have used it. You may not know it, but by reaching out and opening your hand and heart to deliver a slice of hope and a drop of compassion, you may be saving a life.

I also challenge doctors, medical facilities, and healthcare practitioners not to give up on patients like me. Please don’t turn us away. Don’t accuse us. Don’t abuse us. Please don’t pass us around. Don’t send us packing because you can’t figure us out. Family members and friends of those who are affected by this illness, please don’t walk away because things don’t appear to be getting better. Please don’t get frustrated if we can’t meet your healthy expectations just yet. Don’t lose faith in the fact that we’ll someday be back on our feet and standing by your side again. Maybe Sue, George, Jonalyn, Bryan and Lindsay were not the first ones to give up in their battle. Perhaps, along the way, someone gave up on them first.

Keep fighting. It gets better.

Information on the potential component of neurospychiatric lyme (provided by an informed reader):
Neurological, Cognitive, and Neuropsychiatric Lyme
Dr. Bransfield’s Research on Neurological Infection and the Brain

I Am Not A Victim, I Am A Control Freak

// October 18th, 2010 // 1 Comment » // Eric's Blog

I have no real plans for a post tonight, but felt like typing for a while so figured what the heck, I’ll grace you all with my words.  (Or bore you all, it’s a slippery slope.)

Today I met another Lyme friend from Facebook, someone who graciously donated items for auction for my benefit, and is now starting up with a LLMD here in NY.  It was a cool experience.  With each new person I meet that I feel like I’ve known forever, it reminds me how lucky so many of us are for the networks of support we have created through social media platforms.  I always say how lucky I am, with full support of family and friends.  But I know many are not so lucky, and for those I am so happy that there can be this supportive network of other Lyme friends and family who understand what each other is going through.

The past few days I’ve spent a lot of time in bed, and that along with crappy weekend TV selection has left me with a lot of time to think.  I’m pretty bummed looking back over the last 17 months how much of a downward spiral so much has been, leaving me where I am.  I worry about how much further down the spiral can take.  But I also grasp onto the hope that the spiral will eventually end and things will continue to work their way up, back into something I can consider a life.  But man, the waiting is brutal, especially for someone with very little patience for things like this.

But so much of all of this is out of my hands.  I think that is what is most frustrating to me, and I’m sure many of you.  The lack of control we have over this.  There’s only so much we can do ourselves, a lot is just what our body needs.  And when you’ve been sick as long as I have been, it takes a long time to heal.  That is just the way it is.  There is no way to get around it, and that is when that feeling of losing control starts to creep in.  Once we begin to feel we have no control, we then feel owned by the disease.

But we are not owned by the disease.  Limited, maybe.  But we remain in control, even when so much of our illness is out of our control.  As I lay in bed some days, too sick or weak to get up and do anything, I may not have a lot of control over what I’m able to do.  But I still control my mind and my thoughts.  It is still up to me if being stuck in bed is a negative, or something that can be positive.  It’s hard to have hope when you’re surrounded by negativity, and without hope we don’t have much.  So we still have that much that is ours, that we can control, to remain as positive as possible and hold on to the hope that we will get better.

It’s up to each of us to make that decision.  I used to say every day.  Lately I’m finding I have to make that choice more on a minute to minute basis instead of just for the day.  But this disease is brutal, it is life threatening, it is life draining, it affects everyone around you, and it’s tough.  We have to clear hurdle after hurdle on a daily basis, and with that keep on making the choice to believe in hope.

I have a long way to go, but I’m so grateful that I’ve gotten as much healing done as I have.  Talking and hanging with Shelly today I remembered and relived the beginning of when all this hit me, and how terribly sick I was, not knowing if I would make it from one day to the next.  What a blessing to have gotten the treatment I have up until now, and to know I’m being treated by someone who knows what they are doing and what my body needs to heal.

So I’m back in bed, recovering from a busy day and using more energy than I’m used to.  I’m frustrated by a lot of things, and the limitations of this disease.  But I still control things, I am not a victim to this disease, so I cling to hope.  Someday I will look at how sick I am right now and think “wow, I’ve come a long way since then”, just like I did today on the last 16 months of treatment.  I have to believe that, and the hope that gives me lends me the strength I need to get through another day.