Posts Tagged ‘Chronic Lyme Disease’

5 Things I Love About Lyme Disease (Repost from April 2010)

// April 18th, 2012 // No Comments » // Eric's Blog, LymeBites Blog

(I originally wrote this in 2010…and shortly after was a guest on a local radio show about Lyme disease and Lyme Disease Awareness Month, and the person doing the show was really impressed with this post and how anyone could “love” anything about this nightmare…but I truly believe there are silver linings in every cloud, and so many wonderful things would not have happened the last 3 years if I had not gotten sick. Would I choose to do it again? I can’t say I would…but I can’t imagine my life now without many of the people that Lyme brought into it, as well the life lessons I’ve learned along the way. Been 2 years so I wanted to repost this and give others an opportunity to think about things that they love about Lyme disease. (Okay…maybe just things you like or are grateful for, but what things came into your life because of this disease that you now count as a blessing? Those are things we wouldn’t have if we weren’t given the opportunity to get sick and through that to grow and learn and become a better person from the experience.) So read what I said 2 years ago about things that could make me love being sick, think about your own journey and share with us what you’re learned to love since getting sick (or if you have a loved one who is sick, what you’ve learned to love as you’ve gone through the journey with your loved one). I hope everyone can find a way to find happiness in everything, in all that is good and bad. This disease is BAD. But there are still some truly amazing things that have happened. I’m working on an update to this post, 2 years later we’ll see what I still love about Lyme disease!) *Also please note, my milkshakes eventually turned into daily functional food shakes as I went off sugar, yeast, dairy, gluten and pretty much everything else…but in the beginning I didn’t realize what an important role diet plays in your recovery

One of the top 5 reasons I hate Lyme disease is because I have heart attack symptoms every day.  If I ever actually have a heart attack I won’t know the difference.  Now I’m wondering what the other top 4 reasons are that I hate it for.  But then I decided there are more than enough reasons to hate Lyme disease, and thousands of places a day that are devoted to the reasons to hate it. 

So how about something different?

Can you think of 5 reaons why you LOVE Lyme disease?  Okay, okay…stop laughing, I’m serious!  I know we’ve all been affected either as a victim of Lyme, or the loved one of someone with it.  But the old saying that every cloud has a silver lining is true, so if you really think about it, what about Lyme disease can you find that you LOVE?

For me it’s pretty easy to come up with 5 things:

1.  As much as I hate being out of work because I am so sick, it has been kinda nice having the majority of the last year off.  Granted at least half that time I was too sick to even be able to enjoy the smallest part of a day, but as I slowly get better there’s more and more I can enjoy about the day while I am still out of work. 

2.  I have become so much closer with my family and my friends.  There are always casualties in the relationship department when chronic illness strikes, but I seem to be blessed with such amazing friends the losses have been limited.  However the ones who have stuck by my side have been amazing blessings to me and in supporting me to keep fighting to get better. 

3.  I have an excuse to always say ‘no’ when people ask me to help them do physical labor.  I am 6’4″ and over 250 lbs, most peopl expect a strong man to help them carry things, lift things or move things.  Between Lyme disease and my PICC line I always have an excuse to sit back and sip a lemonade while someone else does all the hard work. 

4.  I love the Lyme disease community.  If I had some other awful disease, I think I’d try to sneak over to the Lyme disease side of the party because it is quite an amazingly talented, compassionate and loving group of people.  I can’t think of any other group of people I’d want behind me in this struggle then the community with which Lymies have to turn to. 

5.  Milkshakes.  I have had more reasons than ever in the last year to have milkshakes, and to have them without guilt.  (Of course this is backfiring at the moment while I’m completely sugar free right now, but it treated me well for a good 11 months or so.)  And the truth is, I love milkshakes.  So if I’m gonna have to suffer with something like Lyme disease, then I’m glad it’s reason enough to have good milkshakes on a regular basis.  (Anyone can have bad milkshakes on a regular basis.)

See how easy that is?  So I want to know…what 5 things can you come up with that you love about having Lyme disease?  (If you can only come up with 3 or 4 I will not be grading you on this, so that’s okay too.)

The original post can be found here: 5 Things I Love About Lyme Disease April 2010 Post

Dr. Phil Addresses Lyme Disease

// April 14th, 2012 // 2 Comments » // Eric's Blog, Lyme Media, LymeBites Blog, Medical Info

I probably should have posted about this BEFORE he did the show on Friday the 13th (really…that’s a good thing) covering Lyme disease. I’m posting about it now because he said he knew it would be a big thing on Facebook and Twitter and the Internet. So let’s prove him right, and thank him first of all for addressing such a tough and controversial issue. And secondly, to ask him to do follow up shows.

If you missed the show, it was aired on the 4/13/12 (in case you want to order the DVD or look for it on other channels). I’m including a link where you can see 4 YouTube clips of the episode, as well as ways to leave messages asking for a couple forms of follow up. If you could take a few minutes out of your day to help me, and the hundreds of thousands of others like me around the world it would mean so much to us, so much more than you can imagine the difference your few minutes can make.

I am copying and pasting this directly from Facebook and at the end will include the link for the Dr. Phil website:

This is a major breakthrough for Lyme Disease Awareness. Please, Please, Please, watch the following … and post on the message boards thanking THE DOCTOR PHIL SHOW and asking for follow up shows!!!!

Dr Phil Show On Lyme Disease

Dr Phil – After Show Discussing Politics of Lyme Disease

To Contact Dr. Phil Click Here
Dr Phil's Facebook Page

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!!!