Archive for May, 2011

Ulster County Lyme Disease Support Group May Meeting

// May 14th, 2011 // 2 Comments » // Support Groups

Happy Lyme Disease Awareness Month everyone!!!
This is to inform those in the Ulster County (NY) area, our monthly Lyme Disease support group meeting is scheduled for Wednesday, May 25th at 6:30pm.  The Ulster County Support Group meets every 4th Wednesday of the month at the address listed below.  A great group of people to come out and share your struggles and successes with as we fight this disease together.

Ulster County Lyme Disease support group meets every 4th Wednesday at 6:30pm at 84 Zena Rd in Kingston (Hudson Valley Sudbury School).  For more info please contact March Gallagher, the leader of this support group at march@hvc.rr.com.

MAY MEETING OF ULSTER COUNTY LYME DISEASE SUPPORT GROUP

Wednesday May 25th, 6:30 pm at the Hudson Valley Sudbury School

84 Zena Road

Kingston, NY 12401

Reminder: International Virtual Lyme Walk This Sunday!!!

// May 13th, 2011 // No Comments » // Eric's Blog, LymeBites Blog

Only been a few days since I posted about the upcoming first international Virtual Walk to Turn the Corner on Lyme which takes place this Sunday, May 15th.  To read my original post about the walk, you can find it here:  http://lymebites.com/blog/2011/05/09/1st-annual-international-virtual-walk-to-turn-the-corner-on-lyme/

Time is ticking and the walk is just 2 days away, so there’s still time to join the walk and make a donation.  The Turn The Corner Foundation is an amazing organization dedicated to helping the cause of Lyme disease through education, awareness and research.  To learn more about Turn The Corner and the amazing things they do, check out their website:  http://turnthecorner.org/

I am personally so grateful for this organization.  At a time when I was very lost in this disease, trying to learn as much as I could on my own and just finding more and more conflicting information, I was lucky enough to find this organization.  In addition, it is because of this organization that the film ‘Under Our Skin’ was produced.  If you haven’t seen the film I urge you to see it.  It is an amazing documentary about Lyme disease, the controversy behind it and the patients (like myself) stuck in the middle of it.  Many PBS stations are airing the film this May for Lyme Disease Awareness Month.  (Some PBS stations are playing in June too, each PBS station is different.)  Also, you can now watch ‘Under Our Skin’ on Instant Netflix.  To learn about the film visit:  http://www.underourskin.com/ For those of you with Instant Netflix, you can watch the film here:  http://movies.netflix.com/Movie/Under-Our-Skin/70118373#height1630

As you can see if you don’t already know, Turn the Corner Foundation has done amazing things in the fight for awareness and understanding of Lyme disease.  Without them and their help I wouldn’t have the resources I need available, and the lives of thousands of people would not be changed because of their work.

I urge you all to make a donation to this year’s first annual virtual walk to raise money for this amazing organization.  No matter what the amount, every little bit helps.  I’m honored to be able to be a part of this groundbreaking virtual walk, and ask that you help make this a successful fundraising event, in addition you will be helping to further the understanding of what those of us who suffer from this disease go through, as well as helping as we work towards finding a cure.

To join the Virtual Walk To Turn The Corner On Lyme, visit the fundraising page where you can make your donation.  http://www.firstgiving.com/fundraiser/turnthecorner/virtualwalk I thank all of you for your participation, and by doing so you help give me and hundreds of thousands of other people hope for a chance to get our lives back, and stop others from suffering the way we have.

Thank you again for anything you can do to support this wonderful cause with me!

When A Bad Day Is A Good Day…or When A Good Day Is A Bad day?

// May 10th, 2011 // 3 Comments » // Eric's Blog

I’m on day 7 of my first real break in symptoms in over a year.  Luckily about a month or two ago I had a 4 day streak that was AMAZING.  But until that point I hadn’t had a good day in almost a year.  And then I have this little reprieve here, and it’s been great.  I could go on and on about how great it is, but I also don’t want to sound like I’m bragging (na na na na na, I had a good day and you didn’t).  No….not my point in writing tonight at all.

I want to talk about the less good good days.  I rate each day on a scale of 0-5.  It helps me to track patterns in treatment.  It was so amazing this week to be able to put high ratings, the highest I’ve had like I said in over a year.  And then yesterday the excitement of my weekend caught up with me.  I still felt wonderful in comparison to the past several weeks…month…years actually.  But I was tired.  At the end of the day it was a bit of a let down that the day wasn’t as good as the last two.  Yet it was still better than anything I’ve known in a long time.

Today was another tired day.  Thanks to allergies I had my 3rd night of decreased sleep, and because of that I was overly tired when I had to get up this morning for an appt at the IV center.  So today is still part of the streak of good days.  But I peaked early in the week…and it’s interesting how I can be let down by a day that is better than all the days of the last year combined!

Thinking about this while hanging with my new “crowd”, my 92 year old former babysitter, I realized that I’m not used to fluctuations like this.  Most of my disease has been good or bad.  Not a lot of in between.  So when I have a good day, it’s usually just one day.  If I have a group of days, it’s usually just a group of days and I return to my bad state when  those days end.

This time it’s different.  I think mostly because I’ve made progress in treatment and with some new things I’ve tried.  But instead of having my good days and then crashing the 2 days I felt tired, I just felt tired on those days.  So it’s almost mind boggling after so much black or what when it comes to how I’ve felt, to have days that actually fall into a “gray area”.

After 2 years I’ve become accustomed to saying that any good day is just that.  One day.  And I can’t worry what the next day will bring, or be stressed that the good day won’t last.  Instead I have to get out and enjoy every single minute of that good day, while also not overdoing it.  I’ve managed to “grab the bull by the balls” so to speak (favorite line from movie ‘Never Been Kissed’) with each of these last 7 good days and take advantage of it.

But each day that I wake up and still feel better I am filled with gratitude at another shot of making a day truly count.  But because this change in the pattern of my disease has really thrown me for a loop, it blows my mind at how little we are really prepared for the weird things this disease throws at us.  From the symptoms and physical problems, to the psychological side of what I think of as “the dance”.  The dance between me and those damned little spirochetes that casing all kinds of havoc within my body.  I seem to be in the lead right now, finally getting a lead on those nasty little buggers.

I’ve had to slow things down a bit, not be quite so actively enjoying the good days.  Instead I’m appreciating the quiet times where I can enjoy it too.  Again, another thing I’ve never had to face.  Quiet time is always because I’m sick, or need to rest, or can’t do anything else because of how poorly I feel.  To make a choice to sit down and read a book or watch TV because it’s what I want to do, not my only option of what to do, is truly a blessing.

I share this with all of you so that you can understand when you ask me one day and I say I’m great and you ask me another day and I’m horrible, and you look so disappointed.  Having a good day no more means you are “better” than carrying a feather in your hat makes you a bird.  It’s such an important lesson for family and friends to learn.  But as I’m learning myself at this 2 year mark of treating this illness, I have to say it’s a lesson that even I have to re-learn.  Many of you reading this are years ahead of me, and probably understand exactly what I mean.  Perhaps you have some good ideas or suggestions on how to transition when your good and bad days start to change into something else as you progress with treatment.

Again I’ll say that tomorrow I may wake up as sick as I was a month ago, and that’s okay.  I may only feel half as good as I do today, and that’s okay.  Because I was able to enjoy what good time I’ve been blessed with.  The final thought of today’s ramblings is that.  ENJOY THAT WHICH YOU’VE BEEN BLESSED WITH!!!  Whether it’s a good day, a great kid or a mother who makes the world a better place.  Embrace and celebrate it when you can.  Don’t look back with regret on wasting your good days worrying about your bad days.  This disease is a fickle mess of nonstop changes  in how we feel and in our bodies.  We have to teach our heads to follow and adjust to the changes the way our bodies do.

On that note, I’m going to watch some TV.  Not because I’m too sick to do anything else, but because it’s time to rest now, and that’s what I want to do.  Now I go to bed each night with a strengthened curiosity to see what changes may take place during the night and how I will feel the next day.

Thanks for taking the time to read this, and hopefully share some coping strategies some of you experienced veterans of this disease have used as your good and bad day’s began to morph into something different.

Praying for good days for you all!!!

1st Annual International Virtual Walk To Turn The Corner On Lyme

// May 9th, 2011 // 2 Comments » // LymeBites Blog

The wonderful organization Turn The Corner Foundation is putting on the first ever virtual walk for Lyme Disease.  It takes place this Sunday, May 15th.  And anyone can be a part of it simply by following the link below and joining the fight against Lyme Disease.  I’ve already joined the walk and ask that those of you who are able also do so, by making a donation for this important cause.  To quote Teri Raser, recipient of one of the 2010 Courage Awards given at the annual fundraising Turn the Corner Foundation fundraiser:  ”Without organizations like them, there would be no hope for people like me.”  That is why it’s so important to help this organization fulfill their many missions and goals.  Please join me in this virtual walk and help make the changes to Lyme disease that are so desperately needed, through the amazing work of this organization on behalf of Lyme disease patients everywhere.

Thank you,
Eric

To join the virtual walk follow this link:  http://www.firstgiving.com/fundraiser/turnthecorner/virtualwalk

And So Begins An Excitement and Emotion Filled Weekend

// May 6th, 2011 // 1 Comment » // Eric's Blog

I’m taking a few minutes this evening from my planned activities to share some thoughts with you. Especially for my family and friends. Today begins a very exciting, yet emotional weekend. It was 38 years ago this morning that I became a part of this world. 2 years ago today, on my birthday, I turned to one of my best friends and said that something just wasn’t right with my body. The next day, which will be 2 years from tomorrow, will be the anniversary of the day I woke up sick, and I haven’t been well since.  Following that comes Mother’s Day to wrap up the weekend.

I had 2 Dr appts scheduled today, one with my Lyme Dr. I had just been in there on Monday, but have had a few days of feeling better and having some relief of some of the worst symptoms. Today, although I was sleep deprived, and being forced to sit up and ride around all day, I actually feel pretty good. In fact today may be the best I’ve felt in the last year. Truly a wonderful birthday gift, and a reminder on my special day to be mindful to be grateful for the blessings in life. Today may be the only day I have feeling this good, and that is okay, because I know that is how this disease works. But I am cherishing every minute of the day, not worrying if it will last until tomorrow. If I’ve learned anything in my 2 year journey in treating Lyme it’s that you have to take advantage of the moment you are in, because there are no guarantees for tomorrow.  The Dr was pleased with some recent changes and responses to treatment.  Everyone from the receptionist to the nurse said how good I look and what a difference they can see in me since I was last there on Monday.

I ended up having a really remarkable birthday. Enjoyed the day with my mom, cheating on my Lyme diet and having something yummy for dinner with her. I’m not ashamed to admit I am a Harry Potter fan, and because of being too sick I never made it to see the last movie when it was released. But thanks to my mom I now own it, and to rest up for this weekend’s plans I had decided to just have a quiet night tonight and finally watch this movie I’ve been wanting to see for so long. Will be a great way to end the day, after having what turned out to be a really nice day. Instead of stress and emotional Dr visits, it was nothing but good news, sunny skies and warm temperatures.

As tomorrow is the 2 year anniversary of my becoming disabled, I am working on a post to share my feelings about the past 2 years including some of what I’ve learned through my experience. That brings me to the second part of this exciting yet emotional weekend. It’s still so hard for me to believe that it has really been 2 years of hell to get to this point. And in all honesty I have to say that at many points in the last year I wasn’t sure I’d make it to see my 38th birthday. So just making it this far alone feels like a major accomplishment to me. It’s also an emotional journey to sit back and think about the past 2 years. With the memory loss I’ve experienced some parts of it are foreign to me, like reading my journal is reading a book I’ve never read before. But the 2 years have brought many things to my life. Many things that have been awful, draining and life altering events. Along with many wonderful things…those silver linings and glimmers of light shining through the clouds. While stuck in so much pain and suffering it’s very hard to see the proverbial forest through the trees. But dwelling on the negative does not help get your life back, and does not help the healing process. So as I’ve been reviewing the past 2 years of illness and treatment, I’ve been approaching it from the angle of all the good that has happened because of Lyme disease. I look forward to the post I’ll be putting up this weekend that delves into the side of illness that people tend to forget about because of all the pain and suffering involved with the illness itself.

And then comes Sunday, Mother’s Day. This year we are combining Mother’s Day dinner with Birthday cake with family. Being that Mother’s Day falls right after my birthday and my sickerversary, it falls right in line with the rest of the weekend and reflection. Besides the fact that my mother gave birth to me and gave me life 38 years ago today, she is also the reason I still have my life, and why I have hope for getting the life I lost to Lyme back.

A parent’s love is something that cannot be understood by anyone who is not a parent. I have 2 cats, but it’s not quite the same thing as having your own child. The one thing I’ve learned through my experience with Lyme disease, and in meeting so many other victims of this affliction, is the lengths so many parents and families will go to for their child or family member.  I have not worked in almost 2 years since becoming so sick.  I lost my apartment shortly after beginning treatment with my Lyme Dr because insurance does not pay for long term treatment. As I was facing horrendous out of pocket expenses, I had no choice but to move home, 18 years after moving out. Moving back home as a disabled adult is not easy. Moving back home and being healthy would not be easy on two people who are both very independent and used to living alone. But there was no question for my mother as to what would happen. In fact I remember the exact moment the decision was made, and at no point did I have to “ask” if I could move home. It was implied that the option was there, and facing what I knew was ahead it was the only answer.

From that day in October 2009 until today, everything in my mom’s life has turned upside down. The financial drain of treating this disease. Feeling helpless to help her child as he’s suffered. Having to sit back and watch the destruction this disease causes, as well as the ups and downs of treatment has got to be exhausting and mind boggling for family members, and especially for a mother.

As her house has slowly been taken over by me and my cats, as she has had to learn to change the dressings on my PICC line, as she has had to spend her future on my health, and as she has watched me day after day struggle for improvement and to reclaim my health, she has never uttered a complaint, shown any anger about the situation, or questioned me or my illness. She has done what needs to be done, no matter how difficult it is for her as a mother to face.

I talk to so many who do not have the support of their family the way I do, and so as Mother’s Day approaches I also take the time this weekend to be grateful for the wonderful support and love of my mother, to not take it for granted and to remember that so many do not have the luxury of family support the way I do. For all she has done, from trying to make me comfortable, to dealing with the grief and loss caused by this disease, she has never left my side or stopped praying for me day after day.

I also have to mention my other family members who do so much to help me. My aunt and uncle have been by my side through all of this as well. As with my mom I have never had to defend the fact I’m sick. They’ve never questioned the validity of what I’m going through, or doubted me as I learned the hard way about this controversial disease and shared what I learned with them. Instead they experienced anger, grief and disbelief at a medical system that would treat patients or a disease the way we with Lyme are treated and regarded.  In addition they’ve spent large amounts of money in helping towards my treatment costs.  From buying my supplements and vitamins for me, to replacing my new laptop for my birthday after my old one died, the love and support has been unconditional and unending, and I am extremely grateful to them for also being by my side through this.  (Not only did they get me a new, really nice laptop…but my uncle drove an hour and a half just to deliver it to me a week before my birthday, knowing that one week without a laptop feels like months to someone stuck in bed sick with no other way to be in contact with the world.)

As I return to the rest of my birthday evening, basking in the glow of the love of so many friends and family, a truly beautiful spring day, a Dr’s appointment with good news and a day feeling better than I have in many, many months, I also continue to reflect on the importance of the events of this weekend.

Celebrating my birth, while fighting for my life. Thankful that I was able to make it another year through this illness. Amazed at the 2 years that have passed, and astonished at the things I’ve done and survived that 2 years ago I never would have believed I could do. And finally, so thankful this Mother’s Day to celebrate a wonderful mother who so selflessly gives of herself on a daily basis to try and help me get my life back. My mother raised me by herself, a single mom who created a career as a computer programmer, and found a way to raise me with morals, faith, strength and strong values. Without the life skills and lessons learned from and taught to me by my mom, I would not be nearly as equipped with the tools that I need to survive this dreaded disease, and find a way to fight for my life and be grateful for each day that I am given.

I love my family and friends more than words can describe. I will talk more about the support in general I’ve received when I share my thoughts on my 2 year sickerversary. But on the bottom of that pyramid of friends and family that holds me up and supports me through this trial of life, is my mother. The woman who tirelessly faces day after day not knowing from one moment to the next what to expect from me or my body. I would have been lost a long time ago if not for the help and love of my mother. And only because of her do I have have a shot at getting some form of life back. So on this Mother’s Day weekend that mixes with my birthday and sickerversary, I am extremely thankful for the wonderful example and person that was entrusted with my life, and for all that she has done for me as a mother, but especially during these last 2 years of illness, for all that she has done to support and help me fight to get to the finish line.

Wishing all of the mothers a very happy and special Mother’s Day. Especially those mothers with Lyme who find a way to raise their children day after day while being plagued by this disease, as well as those mothers who have to watch their children suffer so needlessly with this disease yet never stop supporting or helping their children. Several times during my journey other “Lyme moms”, as well as those not touched by this disease, have told me a mother is only as happy as their unhappiest child. I have found this saying to be so true, yet all these mothers keep up the fight, not letting on to how much they suffer as they watch their child suffer.

To my own mother I wish a very happy Mother’s Day, and thank you for all you’ve done, all you’ve had to put up with, and all that this disease has put you through. To my family, a special thank you for the love of family and all the support that goes along with that. And to everyone reading this…I wish for you the blessing of unconditional love of  family. For those struggling for the support of their family, I pray for understanding and guidance as you and your family attempt to come to terms with this disease.  Thank you for taking the time to read this and reflect a little on the important events of this weekend to me and my life.  I also ask that you excuse any typos or grammatical errors.  While feeling better today allowed me to do more things than I ever expected on my birthday, my body is not used to it and extremely tired and just wanting to lay down.  But before the day ended I wanted to share some of my feelings with you all.  In addition I want to thank so many of you for the wonderful birthday wishes, emails, comments, texts, gifts, cards, prayers and packages.  At midnight last night my phone started going off with 23 messages wishing me a Happy Birthday.  As of 5 minutes ago I am still getting texts and messages.  Today my email is full of pages and pages of notifications from Facebook telling me of messages people have left for me.  I am truly touched by such an outpouring of love from all of you, so many of whom I’ve never met in person.  While Lyme has been a horrific experience, the wonderful people and their loving soul’s in my life has made me a better person.  Thank you again for making today such a special day.  No matter what I’ve lost to this disease, what I’ve gained and been given in return outshines any thing this disease has taken away.  Thank you all for helping me to see that, and learning to find that my glass is really half full through this disease, and then taking it one step further and filling my glass all the way so there is no question whether it’s full or empty, because I know it is overflowing.