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!