A Decade With Lyme

Today is a huge day for me in my journey with Lyme Disease. Ten years ago today, as I was undressing to get into the shower after a full and busy day, I discovered a large, oval shaped rash - raised, solid, bright red and 6-7" in diameter on my upper right hip and thigh, in my groin area. I had returned less than a week earlier from a trip to Boston, Massachusetts with my Mother, who was suffering from a rare form of lung cancer called Mesothelioma. September 11th, with all it's horrible implications for our Nation, is also a day I mark, now a decade ago, as one that has proven to change my life forever on a personal level. I had no idea at the time, but this was the day that Lyme Disease first reared it's ugly head in my life.

Ten years ago, I had traveled with My Mom to Boston, where she would be seen at Brigham and Women's hospital, considered leading authorities with this rare, and unfortunately at the time, always fatal cancer called Mesothelioma. My Mom and I had spent several weeks in Boston, and on days that she was feeling good, we had taken the opportunity to travel around New England, doing day trips to New Hampshire, Maine, Cape Cod and other places. While it was under extremely difficult circumstances, it had been a good trip where we were able to make many memories that I will cherish forever. Obviously, I had no idea about Lyme Disease, it's many controversies and how it would potentially impact my life. But even had I known, there was simply too much on my plate at the time, for me to spend any time thinking about or processing any of it right then.

On September 6th, 2003, after weeks of tests at Brigham & Women's hospital in Boston, my Mom underwent exploratory surgery to establish whether she would be a candidate for a much more invasive and aggressive surgery to remove her right lung, the lining of her lungs and heart, and a portion of her thoracic diaphragm. The hope was that she could have this surgery and possibly prolong her life for a few years. It wasn't a pleasant picture, but it was our only hope. Following an intense and extremely long wait at the hospital that day, the doctor came to discuss with me the results they had found, and I received the heartbreaking news that the cancer was now in my Mom's liver, meaning that she would not be a candidate for the surgery. What the doctor didn't say, but what we both knew, was that my Mom was dying, and cancer in her liver meant she didn't have a lot of time.

As I sat with her in recovery that evening, I tried to put on a smile. She would occasionally wake up and ask what the doctor had found. Holding her hand, I would explain that I didn't want to discuss the results with her until she was more fully awake - truthfully I had no idea how I would tell her. It was a terrible day, and a horrible time in my life. The next morning I packed our things at the house we were staying in a few blocks from the hospital, then went to the various areas of that vast hospital to get my Mom's records, films and other pertinent paperwork, which I would hand deliver to her doctor back home. Then I worked with the nurses on getting her discharged. A few hours later we were at the airport boarding a plane back to Coeur d'Alene, Idaho. We both cried most of the flight. I'm crying right now remembering. My Mother did eventually die from Mesothelioma, on December 24th, 2003. It was a horrible time in my life, and while I feel I have worked through it emotionally enough to have moved on with my life in a healthy way, it's something I've never really gotten over. I don't care how old you are when you lose your Mother, it's a huge loss for most of us. I miss her everyday, and I'm not ashamed of it. You grieve for a person to the extent that you loved them. I love my Mom, and she continues to be the single most influential person in my life.

It's sometimes hard for me to put all of this into perspective, since my trip to Boston would have such a huge impact on my life...the scope of which I truly had no idea of at the time. So, as the story goes, several days after returning home, on September 11th, 2003, a friend of mine suggested we go shopping - he took me out to lunch and to a mall an hour away in Spokane, Washington. I needed to get out of the house, away from the heartache and emotion of the situation, and it was good to think about other things. It was that evening that I first discovered that horrible rash, and it was that fateful day that my crazy odyssey with Lyme Disease began. You can read a little more about my story with Lyme before I knew it was Lyme here.

I'm not sure exactly when I got bit - I have my theories - but it's hard to know with ticks the size of poppy seeds. I just know that this is when I mark the formal beginnings of my journey with Lyme. Sometimes it's hard to believe that ten years in, we're still dealing with it in such profound ways. Despite the length of my journey, I consider myself lucky and blessed, for so many reasons. It's crazy to me that my Mom never knew that I had contracted Lyme while we were in Boston, and it's been really hard that she hasn't been here to help me in my journey with it. But I know that somewhere in Heaven, she's been doing all she can to help me in any way that she has been able to. That thought brings me comfort and strength.

So on this 10-year-anniversary that I'd really rather not be celebrating, I'm going to focus on my blessings. That I have a wonderful husband, two beautiful children, an amazing and supportive family, lots and lots of wonderful friends, and I'm getting effective treatment that has given me my quality of life back. Life is a journey, not a destination, and I'm determined to find my joy along the way. The last decade has brought amazing challenges, accomplishments, successes, heartaches, failures and the biggest blessings of my life: my husband and our two healthy babies. Did you know that I met my husband as a result of Lyme Disease? That's a story for an entirely different post, but it's a great one. The reality is, in spite of the difficulties, I wouldn't trade any of it away - not for all the tea in China! It's a wonderful life I am living with my family, and I am grateful for each and every second of it.

Sharing Our Lyme Disease Stories

Here's a little reminder about where we're at, and why I'm so open about my story with Lyme Disease. This blog that I've been keeping over the past four years, isn't anything special. My pageviews are a drop in the bucket compared to many other Lyme bloggers. But that's not why I've continued blogging about Lyme. These are the countries where visitors to my blog have come from so far this week. To little old me, this is pretty amazing. Some of these visitors might just be curious, and perhaps others stumbled across me by accident. But most of these have come through specific internet searches - like Google and Bing - because they are desperately looking for information that might help them in their quest to discover what's happening to them, and how to get help. I like to look at things like this and remind myself why it's so essentially important for all of us to start sharing our stories.

Many times Lyme Disease can be isolating. It can make you feel like you're all alone. Alone to figure out what's wrong with you; Alone to find a doctor that will take you on as a patient; Alone in figuring out how to pay for it all, since it's usually not covered by insurance; and alone to figure out how to participate in and keep your life running as you're watching everything crash in around you. I've been there, and it's not a fun place to be. It can be incredibly dark and terribly isolating. This is why I believe that each of us who has been there in that horrible place, needs to start to stand up. We need to stand and provide others who are still in that place with a light on their path forward. My hope is, that the people within my circle of influence, mostly my immediate family and friends, understand enough about this illness that they can avoid it. But if they haven't been lucky enough to avoid it, I hope that in sharing my story, (sometimes et nauseam,) that I will be able to help someone else avoid this terrible journey of searching - sometimes for years - to find help, and hope.

The other reason that I share my story is that each of us with Lyme Disease can take heart. There are literally millions of people, all over the world, who have walked and are currently walking this path. They know what we're going through in all of these areas, because they've been through it themselves. And the good news, if there can be any good news, is this: the truth is beginning to come out. As each of us, in our circle of influence shares this information, the "truth" about Lyme Disease that we have discovered for ourselves - in the hardest way possible - the actual size and scope of this terrible illness, is going to be fully revealed. I have great hope of that. But we've all got to start talking about it! When I started this blog four and a half years ago, it was to keep a record of this journey for myself, and for any of my family and friends who might be interested in "updates." It's crazy to me that these days, people all over the world are reading my blog everyday. While I don't have huge numbers of readers, I'm hopeful that for the people that do read this, I've done my small part in being a resource, or hopefully pointing them in the right direction to find that help and hope.

These are a few of the reasons that I will continue to try to tell my story to anyone who will listen. I will be forever grateful to my friend - herself a fellow Lyme survivor, along with her husband - who shared her story with me, and suggested that I be tested for Lyme. I believe that she literally may have saved my life. This is why I've chosen to be so public about a fairly private matter. Because the organizations and people that we are taught to trust with our health, well being and very lives, (the NIH, CDC, and mainstream medicine) have NOT taken this seriously, and for the most part are refusing to talk about it, I believe it's up to those of us directly affected by it to get the word out. Think of all the millions of individuals and families dealing with this terrible illness. How many people could we inform and help or protect if each would tell someone else?

The major announcement by the CDC a couple weeks ago - acknowledgement that they have vastly underestimated the number of annual NEW Lyme cases - and that they now estimate new cases of Lyme Disease to be upwards of 300,000 each year in the U.S. alone - was a major step in the right direction. That information is nothing new to those of us in the Lyme community, who have been talking about that number for years...I believe that the acknowledgement is partly due to pressure by all those millions of people suffering with this illness. But there's still so much to be done in fully acknowledging the size and scope of this problem, like the geographic prevalence of cases across the U.S., instead of the isolated northeastern problem it is painted to be. Let's continue to move forward by spreading the word! Who have you talked to about Lyme Disease today?

The Adventure Continues at West Clinic

Hello friends and fellow Lymies!

I have to start by apologizing that I haven't been as diligent at posting over the summer, but the good news is, it's because I've been out living my life! I was reminded by my husband  however, that it's important for me to continue to document my story, even when I'm feeling better. I'm going to try to be better at doing this. Lyme is a marathon, not a sprint, and it's something that we have to learn to live with...my plan is to kick it back into remission, so my body's in control, instead of being controlled by this illness. I feel well on my way to getting there, and I am so grateful to the wonderful staff at the West Clinic, and Dr. Jason West, for all the help they have provided me in working towards that goal.

Several weeks ago while I was at the clinic for my weekly treatment, I had the privilege of meeting 5 amazing fellow Lyme Warriors from several different states who have been following my blog! I consider it an honor to meet anyone who is currently doing battle or who has battled with this illness, and it is wonderful to be able to connect with fellow travelers on this crazy journey.  It makes me so happy that in some small way, I may have been able to offer help or encouragement to someone who is in the midst of the chaos that Lyme causes. I have been there many times over the last ten years, and I'm so glad to be in a position to offer hope and encouragement that you CAN get better, and life can return to normal once again. It was while I was visiting with these wonderful people, that I was reminded that I haven't updated my blog recently. The truth is, I haven't been blogging much lately, (as I mentioned above) because I haven't been spending much time lying in bed or on the couch...I have been busy getting out living my life, and it has been fabulous!

We have had a wonderful, busy, happy summer with several camping trips, visits with family, BBQ's, parties and lots of other normal summer adventures and activities that most young families participate in. I am so grateful, and feeling so blessed. When you have experienced Lyme Disease, NORMAL is a good thing! I wanted to give a quick update about our summer, followed by an update on how treatment is going.

Outdoors enthusiasts from the beginning, it was great to go hiking again!

Exploring Minnetonka Cave - something unimaginable just 2 mos earlier!

Going out for my birthday - first time in three years!

Playing with my kids at the water park!

Family time outside, so happy to be strong enough to do this!

An afternoon at the American West Heritage Center

A great day of pony rides and lots of fun!

Swimming with the kids at the family reunion

First, my husband and I started the summer off by taking a week-long camping trip in South-eastern Idaho. We left the kids with Grandma, loaded up the car and the dogs, and headed for Pocatello. Before we left for our camping trip, I did my weekly treatment. My husband and puppies waited anxiously for me out in the car while I got my IV's and then we were off! Our trip included several days of hiking, something that I love, but wouldn't have been able to even consider doing over the last five years. This was the first "aha!" moment, where we stepped back and said, "I'm really getting better."

The summer adventures continued with so many wonderful activities. A camping trip with friends, an annual family reunion, where I was able to WAKE BOARD and swim and enjoy so many little things that so many people take for granted! I'm including some pictures, in no particular order, so you can see some of the fun we've had. It has been amazing to feel my body becoming stronger and healthier. That's not to say that I don't continue to have occasional "bad days" or familiar, lyme-related aches and pains. I still wake up sometimes with stiff joints, sore muscles or feeling tired. After chasing my kids around all day and trying to keep up with maintaining our household and family, I often crash into my bed at night feeling exhausted. But it's a great feeling. It's great to feel exhausted because I've been doing things.

After 10 years of dealing with this illness, I'm a realist, (or at least I try to be realistic) about how I should be feeling as I'm "getting better." I would love it if there could be some point where I don't have to deal with any effects of this illness - but I don't think that's very realistic. I'm thrilled to know that for now, I can have three months of good and great days, couple with only 4 or 5 "bad" days. The truth is, on those handful of bad days over the summer, even though I didn't feel real great, I was still able to get out of bed and function - take care of my kids, clean up various things around the house, cook dinner, etc. In the past, on "bad" days, I wouldn't have been able to do most of those things. This illness can be incapacitating, both physically and cognitively, so I'm extremely happy with all the progress we've made over these past four months of treatment.

4th of July Campout

So the adventure continues. I'm currently doing treatment one day a week - my first two months I did two treatments a week. My treatments consist of IV and other therapies, usually an injection and other fun stuff. It may not always be fun, but for me, it has always been worth it. One of the things that I really enjoy about going to the West Clinic is the support and empathy that you are able to share in the IV room with all the other people that are there for Lyme. Some days I don't feel like being social, so I'm not. Other days I am more engaged and participate in conversations with other patients or just listen as other people talk. So many are there for Lyme treatment, and while we get our IV's we're able to swap stories, share insights and provide comfort and encouragement. I believe that's a big part of the support and understanding that so many of us with Lyme have a hard time finding.

The stories are always SO similar but never any less heartbreaking: most of us have dealt with this illness by ourselves for YEARS; most of mainstream medicine has relegated us to the "head case" category, or given us a label (chronic fatigue, fibromyalgia, auto-immune issues) then handed us an Rx for pain or anti-depressants and sent us on our way - leaving us to fend for ourselves with our ever declining health and/or abilities; if you've been lucky enough to find a doctor who really wants to help you, your insurance has probably refused to do so; and many times family and friends get tired of hearing about the constant, but ever-changing list of ailments and maladies, and they themselves begin to think you're a hypochondriac, or in the very least, overly dramatic. While I believe that in order to truly enjoy life, you've got to find a way to let go of all this mental and physical pain, frustration and disappointment, (it's certainly easier to do that once you've been correctly diagnosed and are finally getting proper and effective treatment!)  I also believe that once in awhile, it's good to talk to other people who have experienced the exact same things. Getting treatment in this type of setting helps facilitate that element of healing.

For myself, I feel so blessed to have a good support system, friends and family who are trying to understand what we're dealing with, a loving and understanding husband, who has been, over the past almost five years, my advocate and champion in this battle. Someone who is a true partner in life. I also consider myself so blessed to have found effective treatment, that is allowing me to have a normal and wonderful quality of life. I don't feel like I'm ready to end my treatment, but I'm more than happy to continue to be able to experience life on my terms. I will be wrapping up my current round of treatment in October, and we'll see what we find out during my re-evaluation. But for now, I'm so, so happy with the results that we're seeing!