Megan's Two Year "Lyme-iversary"
I realize it has been awhile, and by awhile I mean nearly two months - yikes! Anyways, I don't want to take up too much of your time as I am incredibly excited for you to read Megan's story, and because I don't want to extend my tardiness any further.
So, without further ado...
Two Year "Lyme-iversary"
Written By: Megan (Salo) Breimeier
Today is April 15, 2016 and it is my 2 year “Lyme-iversary.” When I think of the word anniversary, I automatically think of a celebration, a great milestone, an exciting day, but today is just a typical day of the life I’ve been living for the past 2 years. I was diagnosed with Lyme disease on April 15, 2014, after almost 1 year of being passed around from doctor to doctor and enduring countless tests. Despite significant brain fog, I remember the moment clearly. I was driving home from work on a sunny day with the sun roof open. I had reduced to working part time due to a rapid decline in my health. I probably wasn’t safe to drive at the time, nor should I have been checking my phone. I remember seeing a message from my new doctor in Seattle. My heart started beating faster. This was it, the moment I was waiting for, my last resort, my last strand of hope. As I listened to the message, a smile came across my face when I heard that I tested positive for Lyme disease. I finally had an answer, I wasn’t crazy, and my persistence in finding out what was wrong with me had paid off. I could now tell people that I had a diagnosis, it will all make sense, and they will understand. Little did I know what was in store for me. I quickly learned that this was going to be a very long battle and that Lyme disease comes with an endless list of symptoms, judgment, controversy, and a mountain of insecurities.
Sometime during my journey with Lyme disease, my mom told me about the More Than Lyme blog and I have been a fan ever since. I am inspired by Chloe and can relate to everyone who shares their stories. I decided to email Chloe and ask if I could share my story and she responded quickly saying yes. This was on Nov. 16th, 2015, talk about procrastination. Every time I tried to get started, I had no idea how to put my thoughts and experiences into words. So I continued to put it aside and tell myself “when my brain gets better, then I will write it.” Prior to Lyme, I was a pretty decent writer and I wanted to wait until the perfectionist in me returned and when I felt like the “old me” was back. I waited and waited...One morning, I was routinely watching Kelly and Michael who had Sara Bareilles as their guest. She played the piano and sang a song called “She Used to Be Mine.” As I listened, I burst into tears. I cried because the song described how I felt, the words that I couldn’t come up with were right there in her song, along with the pain I felt. Then as any “sane” person would do, I looked up the lyrics, bought the song on iTunes, and listened to it over and over again. After I exhausted myself from crying, the idea sparked in my head that I could use the lyrics from Sara Bareilles’ song to help me share my story. I started writing here and there over the past many months. Today on my 2 year Lyme-iversary, I’ve decided it’s time to face my fear of dealing with my true emotions and finish writing my story.
“SHE USED TO BE MINE” song by Sara Bareilles
“It’s not simple to say, that most days I don’t recognize me…It’s not easy to know, I’m not anything like I used to be…I still remember that girl” - Sara Bareilles
Many times when I look in the mirror, I don’t even recognize the person staring back. I see sad eyes, resting above purplish bags that never seem to go away. This stranger looks tired, frail, and I can’t believe it is an image of myself. However, most people do not look at me and think I look sick. Lyme disease is also known as an “invisible illness.” Over the past year, I have gained a few pounds and I don’t look as frail as I used to. Makeup and a cute outfit can do wonders, but by the time I’m ready to go somewhere, I am exhausted. Thank God that yoga pants are in! When I do meet up with friends or am out in public, I have learned to put a smile on my face for others. I have become very good at covering up pain and other symptoms. I smile in majority of pictures and no one would know that I am sometimes screaming and miserable inside. I was told this past summer by a photographer at a wedding that I have the nicest jaw line he has ever seen. I couldn’t help but laugh to myself and think “well anyone could get this look if they get Lyme disease and lose an unnecessary 20 pounds.” Despite others thinking I look fine, I can see a difference, feel a difference, and am still working hard on self judgement and to stop wishing that the “old me” would come back. The truth is she isn’t going to. I’ve been working on embracing the “new me” and trying to stop living in the past. It is much easier said than done.
So who was the “old me?” A few years ago I would have said, Hi I’m Megan Breimeier (aka Salo to some) and I’m a Physical Therapist, my husband’s name is Adam, and we have a puggle named Reggie. We have a nice house in Gig Harbor, WA. I grew up in the Upper Peninsula of Michigan (shout out to all Yoopers) and went to college in Duluth, Minnesota. I ran cross country in college, have ran 5 half marathons, work out regularly (love Jillian Michael’s DVD’s), I ski and my husband has been teaching me to snowboard. I think you get the picture…I was very active. I also like to travel to warm destinations (Maui is my favorite), have date nights, and go out with the girls.
All of these things came to an end very quickly and I felt lost in a whole new world. I became a homebody who was very sick and wanted to avoid interaction with others. When I was able to socialize, there were 2 questions that I hated being asked and am still not a fan of. First question: what do you do for work? Me thinking: Do I say I am a Physical Therapist, or I was? I plan to return as a PT, but I am not working now. How do I answer the question briefly without telling the entire story of how Lyme disease has changed my life? What is the person thinking, do they believe me, do they understand? After trying to answer this question over and over again, I started to get very annoyed that most of our culture defines who we are by our jobs. Being a PT is just one thing about me, but it does not define me.
The second question: what do you do at home all day? I dislike it because of fear of judgement from others, but it is mainly judgement from myself. I truly do everything I can to get better and that involves a lot of rest and sleep. Now that may seem like a dream come true to others, but it is only nice when you choose to do so, like when you are on vacation. Try doing it for 2 years without being able do something else when you get tired of it. I can read for a short time, watch a lot of Netflix, meditate, play brain training games like Lumosity, and I have been working on a paint by number and a few other, I hate to say, sedentary activities. Pain and fatigue limit the duration that I can do these activities. If I overdo it, I pay the price.
Some days I’m able to get outside and walk up to 1.5 miles, which is a huge improvement compared to when I could barely walk one block. I am so grateful to be able to do this. I go counseling 1x/week, which has helped significantly. I should have started much earlier than I did but that was delayed due to denial and my stubbornness, thinking I could do everything on my own. Every day I cuddle with my amazing dogs and look forward to when my husband gets home from work so we can hang out and watch our favorite TV shows. Then I go to bed at 10 pm. And get this, I have a daily planner for each eventful day. Forgive me for the sarcasm, but sometimes I just think it all sounds pathetic. There I go being hard on myself. I know it is not pathetic and I have worked incredibly hard and made so much progress. Even so, it is exhausting to give 100% every single day for the past 2 years, trying to reach a finish line that is not in sight.
After a 4 year career as a Physical therapist, the tables have turned and I have switched roles from a PT to the patient. I go to PT 2x/week and have felt embarrassed that I can’t remember all of the knowledge that is trapped somewhere in my brain. It took me awhile to realize that in order to make the best progress, I needed to allow myself to take on the patient role and trust the people helping me. I started with relearning proper posture and body mechanics because after spending so much time curled up on the couch, my body had forgotten how to move properly. I remember using the arm bike for the first time. I made it to the 3 minute mark and had to stop. Afterwards, I slept for like 17 hours! That is what I mean when I use the word fatigue. Now I can do resistance exercises and my strength and endurance continue to improve.
This is a very unique experience and the positive that comes out of it is that I’ve experienced both the professional and patient sides of PT. When I am able to return to work, I will be able to relate to my patients in a way that I wasn’t able to before. I will be able to connect with people on a different level, to understand what certain symptoms feel like and what it can do to a person, to be more compassionate, a better listener, and someone they can count on and trust. I am still discovering the “new me,” and over the past 2 years I’ve learned and continue to learn that I am a loving, kind, compassionate, and driven woman. Oh and I am still stubborn and a little feisty, that will not change. I am determined to regain my health and I will never give up. I try to be as positive and present as I can each day and I will not let Lyme disease define me or take over my life. I have great memories with the “old me” and am looking forward to how the “new me” continues to evolve.
“She’s imperfect but she tries, she is good but she lies, She is hard on herself, She is broken and won’t ask for help, she is messy but she’s kind, she is lonely most of the time, she is all of this mixed up, and baked in a beautiful pie, she is gone but she used to be mine.” - Sara Bareilles
In the beginning, I was very stubborn and didn’t want to ask for help or accept my limitations. I worked as long as I physically and mentally could. I have my Doctorate in Physical therapy and there came a point where I was putting my license on the line, and was no longer safe to work with patients. I actually got lost a few times on the routine drive home from work, and I had a GPS! Talk about scary!
My stubborn self has pushed the limits many times. One day my husband and I took the ferry to Seattle for my doctor’s appointment. Afterwards, I said we should walk to the ferry docks from my doctor’s office instead of taking a cab. We started walking and Adam could see that I was exhausted and told me that we needed to stop and flag down a cab. I refused and continued to walk while crying and feeling like my body was going to shut down at any minute. Well I learned the hard way and pushed myself so hard that I actually broke my foot from walking, yes walking. This was the wake up call that I needed to accept help from others, to learn my limitations, and understand the severity of Lyme disease.
For the first few months, I refused to let my parents come visit me from Michigan. I did not want them to see me like this, and I know it broke their hearts. Accepting help from others is never easy. For as long as I can remember, I have viewed myself as an independent person. Over time I learned that it was ok to ask for help. I needed to practice what I preached as a PT. I am blessed to have the amazing support system that I do. My husband Adam stepped up while working full time. He did the laundry, grocery shopping, prepared all of my meals, and makes homemade organic chicken soup on a regular basis. I have a ton of food sensitivities so that adds in extra work. He still drives me to Seattle for doctor’s appointments, gives me his shoulder to cry on, answers questions I repeatedly ask, and so much more. He is my hero. Now we can laugh about things like when I used to lose my cell phone in the house 10x/day, hoard cardboard boxes and toilet paper roles for an unknown reason, and my online purchase of horrendous magenta high top shoes that I would never ever wear. We were a few years into our marriage and this could have destroyed us, but we are closer than ever despite everything that has happened.
Eventually I had to let my parents visit, which I should have done in the first place. They were able to actually see what Lyme disease had done to me, meet my doctor, and help in any way they could. I know it wasn’t easy for them to see me struggling so much and not act like myself. I had sound sensitivity and ringing in my ears so the extra voices in the house were overwhelming. I would cover my ears and I literally told them to “stop talking” at times because I was so overstimulated. I felt terrible acting that way, but they continued to be there for me and love me unconditionally. My dad would set what looked like overflowing plates of food in front of me to help me gain weight and energy. I ate what I could despite nausea and zero appetite. I was so grateful for their help, however, I had difficulty showing it because I felt so miserable. During the first year, I had a few setbacks and I had to call my parents and ask them to fly to Washington because I needed help when my husband was at work. There was no hesitation, they came to my rescue. My in-laws are also so supportive and have done the same.
Anyone going through a chronic illness or tough time will say that you will find out who your true friends and supporters are. I am so blessed for the people in my life who have shown me love, support, and encouragement. I have received care packages and cards from friends and family near and far. They ask questions if they don’t understand things, and even if they don’t understand they have stood by my side. You all know who you are and I love you guys so much. Sadly to say, this is not the case for many, which breaks my heart. A lot of people lose friends and family members during chronic illness. Some people are afraid to see others suffering and would rather avoid it. Some just don’t understand. I encourage anyone out there who knows someone who is suffering, to show that person you are there for them. Even the smallest gesture helps, a card, text, or watching a movie with that person. Let them know you care and if you don’t understand, ask them questions to help you understand. If something were to happen to you, wouldn’t you want to know that you could count on your family and friends to be by your side?
Adding to my support system are my two dogs. I really don’t think I could have gotten through this without them. They know when I’m having a really bad day and stay by my side no matter what. Reggie will follow me around the house to make sure I am ok. Sometimes he freaks me out because he stays extra close to me. I ask him if I am going to have a heart attack or something and he just wiggles his tail…very reassuring! Walle shows me his “I love you” eyes, and dances on his hind legs to make me smile. I am very attached to them. In the fall of 2015, we adopted a cat who had started following me when I would go for walks in my neighborhood. He would walk by my side and follow me home. I guess he adopted us, and we named him Dexter. I called Dexter my “little healer.” If I was ever having anxiety, crying or my heart was racing, he would come running to me and lie on my chest and purr. I became attached to him quickly, however, he only lived with us for a short 8 months due to congestive heart failure. I didn’t want to let him go, but he was suffering. Dexter will always remain in my heart. That left me and Reggie spending our days together until we adopted Walle, who fit in with our family right away.
Despite my amazing support system, I have felt very lonely spending majority of days at home when Adam goes to work. I spend a lot of time thinking. It’s very difficult to have a disease that has no cure, where the answers to the questions I want to know aren’t there, that I have to have faith that God put me on this journey for a reason, and that thinking of the unknown future won’t do me any good.
On the other hand, there are good things that come from spending so much time with myself. People have to work, they don’t have time to sit and think about their lives, what is important to them, to figure out who their true self is and what that really even means. I do believe that the greatest lessons you learn in life is through the obstacles and challenges that appear. I have fallen, gotten back up, been knocked down again, and right now I’m standing the tallest I have ever been. It is a physical, mental, and spiritual battle and they are all equally important. Although it is not easy, I think that trying to improve and balance all three can help improve everyone’s life. The “old me” would never have thought this way and was living a very distracted life. To me that shows that something beautiful can come from the ugliness of Lyme disease.
“it’s not what I asked for, sometimes life just slips in through a back door and carves out a person and makes you believe it’s all true. And now I’ve got you, and you’re not what I asked for” - Sara Bareilles
I’ve never asked myself why me? I grew up and went to college in the Midwest, which is a high tick populated area. I was outside a lot and it wasn’t uncommon to find a tick on you, even though I don’t recall a bite. The awareness in these areas is lacking about the dangers and severity of Lyme disease and I never thought a tiny tick bite could change my life.
So like I said, I don’t remember when I was bit, and it doesn’t really matter anymore. I tested positive for Lyme disease, had a high likelihood of being bit, and demonstrated signs and symptoms that my doctor all took into account when diagnosing me with Chronic Lyme disease. I was also diagnosed with inflammatory and toxic neuropathy, and much later down the road with heavy metal toxicity. So basically, I am full of bacteria, toxins, and other lovely things. I began treatment for Lyme disease on April 17th, 2014, and the next day I had my first herxheimer reaction which continued for what seemed like an eternity. Imagine the worst flu you have ever had, add in your worst hangover, plus some neurologic symptoms, and don’t forget pain. I was extremely weak, nauseated, my heart felt like it was beating out of my chest, I had difficulty breathing and swallowing, bladder problems, constant tingling in my hands and feet, I was dizzy, lightheaded, and my entire body hurt. It was a pain I had never experienced before and had difficulty describing even though I was a trained PT. My muscles were spasming and twitching out of my control. I was so tired, but couldn’t sleep. I had night sweats and nightmares, had trouble getting out of bed, and my legs were so heavy it felt as if I were walking through mud. I felt like something had taken over my body and brain. I was no longer me. I had difficulty following conversations and could only read maybe a few paragraphs if I read out loud while sounding out what were once easy to pronounce words. I was trapped in this unknown body, and unable to speak, act or physically move the way I used to. I felt as though I was disappearing and was fearful that I may not return. The next few months were a roller coaster of up and downs. I could no longer work, I couldn’t drive for months at a time, I was down to 94 pounds, starting having major anxiety, and found out that in addition to Lyme disease, I also had 2 coinfections called Bartonella and Babesia (similar to Malaria).
Treatment for Chronic Lyme is very difficult and has to be individualized for each person. My doctor uses both Western and alternative medicine and I have taken many different antibiotics, other prescriptions, and herbal supplements to find the best combination that my body responds to. I never in my life thought I would ever take as many pills or weird sounding things that I have, but when you get this sick, you get desperate and are willing to try anything to get better. The good news is, I have continued to make slow but steady progress over the past year. I wish it would speed up, but I’d rather move forwards than backward, so I just need to focus on moving forward at whatever rate my body will allow. My doctor and I both think that I have killed off Bartonella and Babesia. Seriously, the thoughts and words I have for those coinfections are...I’ll let you fill in the blank. Just think of the worst things you could say or call something and that is what they are. I have defeated them, and they are not welcome back. So that leaves me vs. Lyme, and I’m putting my money on me. I will win.
“For a chance to start over and rewrite an ending or two, for the girl that I knew. Who’ll be reckless just enough, who’ll get hurt but who learns how to toughen up when she’s bruised…And then she’ll get stuck and be scared of the life that’s insider her” - Sara Bareilles
I know I can’t start over and I hope that someone finds a cure one day, but until then the only thing I can change is how I am going to approach each day. Somedays, I feel like I have no control at all.
Here is a journal entry dated Jan 27th, 2015: “I feel trapped in a body that something else has taken over. I picture the colonies of bacteria in my blood, brain and body trying to suck the life out of me. I feel like one little thing could completely shatter me and the glass is ready to break. I am scared and terrified about what this disease will do to me. The words that I want to say won’t come. This is my life.”
I definitely was in a dark place that day. I have been there many times, but I can’t forget the good days too. I’ve been able to attend some of my closest friends’ weddings. I didn’t care that I needed a wheelchair for long distances, took extra pain pills, and spent weeks on the couch afterwards. My husband and I went to the U.S Open in WA. Adam bought tickets before I was sick and I wasn’t going to miss out because I couldn’t walk far. So I rocked a power scooter and rolled up beside the couples in their eighties with a front row seat to the 18th hole. My body completely shut down afterward and I had a full blown panic attack, but I choose to focus on positive memories of that experience. Lately, I’ve been having more good days than bad and it is my choice to decide if I’m going to make the best of it or not. I have to give myself some credit and say that I’m tough, maybe even badass at times, but I have a fear that lingers within me. My biggest fear of all is a major setback, something that brings me back to the beginning, having to relive the darkest, scariest, and most miserable days of my life. I know I will get through it if it happens, because I’ve done it before. The problem is, no matter how hard I try, I can’t seem to erase this fear.
“Growing stronger each day, ‘til it finally reminds her, to fight just a little, to bring back the fire in her eyes that’s been gone but it used to be mine.” - Sara Bareilles
Today I am the strongest I have been in the past 2 years. I try to focus on daily achievements such as emptying the dishwasher, doing laundry, and going to PT, which reminds me to keep fighting. I was so excited the day I started using weights and resistance at PT. And I think I am the only person who does a happy dance after grocery shopping, something that at one time seemed like an impossible task. I was scared about my upcoming “Lyme-iversary” because it is a remembrance of the most challenging and life changing journey that has been full of every emotion possible, suffering, pain, anxiety, and fear; but after reflecting I realized that it is also full of love, hope, strength, faith, happiness, and laughter. A journey full of life lessons that have changed my life for the good. It is an anniversary of personal growth, strength, a new me, a new meaning to life and love, a reminder that I can turn any situation into something positive, and that my comeback is so much stronger than any setback.