Posts Tagged ‘Eric’s Journey’

Lymenaide – And Then There Were None

// April 16th, 2012 // 5 Comments » // Ashley's Blog, Eric's Blog, LymeBites Blog

I’m writing this post just to clear up a lot of questions and concerns and other issues. As is obvious I’ve been too sick for a long time to do anything. In that same time period the organiation Lymenaide which I worked with and was a part of helping to do make Paint May Lyme Green a reality, has become extinct. There is a better word for it…maybe retired?

Lymenaide Final Post is where you can go to read what Ashley has said about her time working with the Lyme community and her plans to move on. It was on honor to work with a great team of people who were very creative, passionate and committed. I hope Ashley finds all she’s looking for and has a wonderful, healthy life ahead of her.

I however am NOT better. I wish I was!!! But I am not. But I’m getting to the point where I can start to be active again. I’ve been under attack with so many emails and questions about Lymenaide going away and what that means for LymeBites and my involvement in the Lyme community. It means nothing.

Lymenaide was a wonderful organization that served it’s purpose and did a lot of good, and interested enough people to “take over” where Lymenaide began. The PSA’s were a major accomplishment, with help from many in getting the celebrities to do the PSA’s to Ashley’s work with her brother in actually filming them. Then the hundreds of volunteers who helped get them to the many TV stations. It was a success. And it was meant for it was meant for, served that purpose, and now that that has happened it is “retired”.

So best of luck to Ashley, as well as Nani and Candice in their endeavors. But I want to let people know that Lymenaide ending does not mean that all 4 of us in the organization are all ending what we have. LymeBites and Lymenaide often crossed over, but the purpose of LymeBites was always different than the purpose of Lymenaide. So the changes do not effect my involvement in Lyme disease awareness, my responsibility to it because I have a voice that can help others, or my commitment to make a difference.

So nothing bad happened. If you read Ashley’s post you’ll see she is very happy and finding her new life. That is wonderful and I hope she finds every happiness in the world. But in the meantime, I am not going anywhere, LymeBites is not going anywhere, and we are about to unveil a new and improved website as well as some great projects that are being worked on as we speak. (Well as soon as I finish this post.)

But with the way people speculate I was hearing horror stories of fights and problems…as if Lymenaide was like Fleetwood Mac without all the cocaine. Nothing like that at all. Just that we served our time and purpose together and that was meant to be, and now we all move forward with what is in store for us next.

I just wanted to put a little post out there to let people know that so they don’t think there was any form of negativity involved in any of the changes, and to let you know while I’ve been silent for a long time, I’ve been fighting like hell for my life and my sanity, so that I could get back to doing what I do best. Run around in circles and hope once in a while I do something right.

Health, happiness and peace to everyone.

Time Keeps Ticking – Tick Tock Tick Tock

// April 13th, 2012 // 2 Comments » // Eric's Blog, LymeBites Blog

I don’t know why but that title reminds me of being a child and the fear I’d have when Peter Pan was on TV once a year and I’d hear the tick tock of the watch eaten by the crocodile. (I have to admit, my brain is much worse than it used to be, my dyslexia is at an all time bad, and I’m not sure I have all the facts of Peter Pan right, but I don’t have the time to watch it now, so bare with me as I muddle my way through an attempt at an update.

It’s been over 4 months since my last post. In fact I think my last post was when I hit my 2 1/2 year “sick” mark. (Sick for many, many years before that, but the day I woke up completely disabled and never recovered is my “sick day”.) The 3 year “sickerversary” is coming up, the day after my 39th birthday. Hard to believe when I was 35 I was so sick and told my friend my body just wasn’t right, something was wrong. And now I’m getting ready to turn 39 and am still sick, living in a bed in my mother’s family room, fighting every day to have the physical and mental strength just to get out of bed and do what I have to do just to maintain being sick. Not even considering what needs to be done to heal, to find happiness in a life filled with pain and misery, to find a “home” in someone else’s home, and accept this as my life and my future.

I’ve more or less wiped out a good portion of my friends and family financially. The out of pocket costs so far are in the 6 digits, and I don’t know that I can even safely say I’m “halfway there”. Truth is I don’t think there is ever an ending point, so you can never truly have a halfway point.

That’s what sucks about being sick with Lyme. And I mean really sick. Not the lucky people who see a tick, get it taken care of and properly treated immediately and then are fine. I mean the other majority of us that went for years and years without diagnosis, only to end up so physically disabled by the disease that by the time we found out about it, it was too late.

It sucks. We know that. But what are you going to do with “it sucks”? I stopped going on the FB “news feed” because I was so sick of seeing so many depressing posts. I made a goal to keep my FB page nothing but positive and honest (sometimes honesty isn’t positive, so then I infuse it with humor to take away the bite). But so many people who just don’t accept that life has handed them. (If you’re expecting some kind of “if life hands you Lyme make margaritas” saying here you will be disappointed. Actually, I guess you won’t because I ended up using one anyway.)

I reached a point where I realized this disease took away my life. The life I had. It didn’t take away my ability to live. So yes, I have been “gone” a lot over the last year or longer, and there are many reasons for that. I hope to share some of them with you, as well as my journey to get me back to the point to be able to sit and write again.

Am I going to write I’m filled with hope and happiness and gratitude for an illness that has taken away the life I loved and left me with a life I have to learn to accept, let alone try and like? No. Because I’m not. I’m mad as hell about that, even 3 years later. And maybe will be for the rest of my life. But that anger is fuel, and I need to use it to fuel the right fires. And over the last 2 years, which have been pure hell for me (I never expected how far down bottom could be until I hit rock bottom….and then hit it again….and then once again….and you guessed it, once again), I’ve had to learn to direct the fuel of my anger into the proper channels. And slowly I’m finding a way to accept what life has handed me, be thankful for it, and turn it into something beautiful.

So what are you going to do with “it sucks” in your situation? What can you do to make “it sucks” be okay? Please share you ideas in the comments section to share with others your ideas. And over the next few months, along with some amazing projects and articles that are being worked on, as well as a general overhaul of the website, I will share with you some of my secrets. (Nothing that will keep me from being elected to office in the future, but I think you all have enough on me already to keep that from happening.)

Life is a gift. But that is it. It’s like an empty box. The contents of our life are not just handed to us, we have to create them with what we are given. So help others know how you “create” out of “it sucks”.

Happy Sickerversary to Me!!!

// December 7th, 2011 // 2 Comments » // Eric's Blog

`(quick note….as many of you obviously know, I have not been able to do much work on the website in quite some time. I have spent a good portion of the last year too sick to do much but survive. I also hit a point in treatment, and my illness where it became a “sink or swim” situation and I had to make the choice to swim, and in so doing all my time, energy and what little mental clarity I have had have gone into just making day by day with treatment, with making it day by day, and trying to not let go, or let go of hope that while maybe only halfway through this whole thing I can find a way to make it all the way through. But because of all that and how sick I’ve been I have not been able to write much. But today wanted to share this.)

Exactly 2 1/2 years ago right now I was returning home from a day of emergency Dr appts. It was 2 1/2 years ago this morning I woke so sick we were afraid I had had a stroke. By 6pm that Friday night I was told it was probably MS and to follow up with my primary Dr on Monday. It was 5 1/2 weeks later, after being told I was healthy and any pain I was having was in my head (and several specialist visits) that the one thing all the “great Drs” said it was not, but a random PA said “sounds like Lyme”. On a whim my primary did a Western Blot and it came back positive. Yet all those specialists were so sure of themselves they wouldn’t run a cheap standard test (which is only 33% or so effective per the NYS Dept of Health). I wish I could go back in time and warn myself what was ahead. But as one of my best friends said last night…I’m still here, after many close calls, including yesterday when I was really afraid I wouldn’t make it through the day. It doesn’t seem right that so many miracles would come my way making it possible for me to be treated for the last 29 months, and still be able to pay for it without mom losing her house or anything drastic. Thank you to all of you who have done the annual benefits to help, for those who pick up random bills, send me checks for no reason, or offer to pay for a month’s worth of this or that, to those who pay for my vitamins and won’t let me pay them back. With tears in my eyes right now I thank you all. Because somehow against all odds I’ve made it this far. And it doesn’t seem fair that the path would open up to get me this far for me not to make it to the finish line.

I’ve hit a rough patch in my treatment, making me a sick now as I was 2 1/2 years ago. Then I was calling friends and telling them what things to get out of my apt when I died before my family could find them (every single person’s nightmare according to sitcoms…and all my single friends)…today I rely on the love and support of literally hundreds of people. I am so blessed, with every intense pang of pain I remind myself this to forget the pain. God bless you all, may good Karma be yours…or may you find a case of girl scout cookies on the side of the road. Whatever it is…I hope you are all blessed for what you have done to get me this far.

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!!!

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.