Obviously, at that time I had no idea what I was in for, nor did I know what Lyme disease was.
I remember that day like it was yesterday. There I was sitting in the doctor’s office waiting as she reviewed my labs, watching as she shook her head indicating she knew what the numbers on the page meant.
Finally, she said, “Well, you definitely have a Lyme infection, and based on these numbers (pointing at the labs) you’ve had it for quite some time!”
After hearing her words, a sigh of relief came over me and I was actually happy. For two years I had bounced around to different doctors, had labs drawn multiple times and practically lived at the physical therapist’s office.
During this time, each doctor evaluated me according to their specialty and either said they didn’t know why I was so sick and sent me to another specialist or they would diagnose me as psychosomatic, which means they thought the cause of my illness was in my head and caused by STRESS.
I was livid because I was really very sick. I knew what stress was, I had grown up and worked in the Washington DC area. I knew that what I was experiencing was not stress. Honestly the only thing that was causing me stress at the time was their misdiagnosis and lack of compassion.
At the end of the two-year mark when I finally had a positive lab test for Lyme, I initially had an appointment with my primary care physician who stated in a matter of fact way, “Your test is positive for Lyme but I believe this is a false positive and that you’re just stressed out because you have 4 children, 1 being a new baby and you’re trying to homeschool!”
Can you imagine being told that? I couldn’t walk without intense pain, every time I turned my head I strained my neck muscles; my shoulder, elbow and hip felt broken, my entire body throbbed in pain. I slept for 14- 20 hours a day, I had no memories of past events or conversations and could not process simple thoughts and tasks. I had a long list of other symptoms that none of my doctors could explain.
I verbalized my disagreement and frustration with this doctor and I stated that I would be getting a second opinion. She recommended the doctor down the hall who had been treating people with Lyme.
A few weeks later it was confirmed that I did indeed have Lyme.
I was so happy that I finally had a diagnosis, someone actually believed me and I felt that now I could begin to heal.
Most often, Lyme disease goes undiagnosed or misdiagnosed and can be confused with almost any other disease including cancer. It can affect every part of the body and every system and can cause inflammatory markers on lab tests to make doctors believe you have a different disease or condition.
Never settle for the “stress” diagnosis if you’re really sick and have multiple unexplained symptoms. Listen to your gut and get as many opinions as you can until you are satisfied.
Knowing what I know now through research and experience, I always think tick-borne infections first and then work my way backwards. Many doctors believe that other biting insects like flies, spiders, fleas and mosquitoes can transmit these diseases and that they are more common than previously thought.
The CDC states that each year 300,000 people are diagnosed with Lyme. This number is grossly understated because approximately 70% of those tested for Lyme are missed.
I always say, know your Lyme facts, educate yourself and be prepared before you need to.
Read more about why you can’t trust a Lyme test: Testing for Lyme Disease
Want to know how to find a doctor? Check out Looking for a Lyme Doctor
Here’s a handy print out to take the doctor with you if you’ve been bitten by a tick: Tick Treatment
Learn how to recognize Lyme disease in your child. Recognizing Lyme in Children
Healing From Lyme Disease, Co-infections and Adrenal Fatigue
Being the wife and mom of a household full of Lymies has been a hard road for sure. For years I have spent countless hours in research, taking myself and my children to doctors, filling prescriptions, ordering herbs and supplements, organizing medicine boxes, keeping pain journals and charts, homeschooling one-on-one, and doing everything else I could to help get us all better from Lyme and co-infections.
For years I have spent countless hours in research, taking myself and my children to doctors, filling prescriptions, ordering herbs and supplements, organizing medicine boxes, keeping pain journals and charts, homeschooling one-on-one, and doing everything else I could to help get us all better from Lyme and co-infections.
Early on I was able to focus on my own healing and healthy living but as we diagnosed each family member it became more and more difficult to find time for self-care.
My 2nd daughter was very ill and spent much of her time in bed not able to lift her head, some nights she was up all night vomiting, she was weak, fatigued and filled with pain.
By the time my 3rd daughter was overcome by psychiatric symptoms I found it was impossible to take care of myself.
My daughter needed my attention and care almost all day and much of the night. Every morning I was greeted with her screams of anxiety and pleas for me to come help her get out of bed.
I was living on a thread; overloaded, frustrated and stressed out. I could feel the desperation deep inside; I was desperate for answers, for help, healing, and peace.
My whole entire life was consumed with caring for my family and while I made the effort to eat as healthy as possible and took small bits of time here and there to take breaks when I could, it wasn’t enough.
I knew that my lifestyle would eventually catch up with me and that I was living with way too much stress.
I could feel my own anxieties and exhaustion on a daily basis. I was an impatient mom until I learned that my impatience and anger made my daughter many times worse.
I was forced to take deep breaths and wait quietly for the tantrum to end. I was forced to patiently and gently speak to my daughter, to walk her through her therapy techniques.
Little did I know that learning this calming behavior was helpful for me too, it taught me to calm myself and not take on all of my daughter’s stress and chaos.
Now everyone has gotten better and my daughter no longer needs me 24/7. The only thing she needs from me now are a lot of hugs, help with school, and to listen to the new songs she wrote. I like my new responsibilities.
I’m no longer living in a constant fight or flight mode but I discovered recently that because I lived this way for so long my adrenals are fatigued, my emotions are raw and my body is exhausted.
Many of my initial Lyme symptoms have returned with a vengeance and I have a deep longing to hibernate along with the rest of nature.
So now it’s my turn to care for myself, to be gentle with myself, to allow myself to rest, to heal and to seek the care that I need.
It’s really hard for me to kick my feet up and read or take a nap, I always feel guilty.
What I’ve discovered is that my kids and my husband are always happier when I’m taking care of myself. They actually like to see me rest.
The day I stayed in my PJ’s all day gave me a glimpse of that. My husband kept telling me he was proud of me for taking the day to relax. My daughters walked by, smiled and said, “Mom I like how you changed into new PJ’s for the day,” my son kept walking by me smiling and he told me he liked me sitting.
The other day I told my son we were doing school snuggled up in a blanket because I didn’t feel well. His reply was a happy “Yes!” with the whole bent arm thing going on. He said he loved when I sat and relaxed because we could be together.
I hope you’ll find time to take care of yourself even if you have to take care of others. It is really important.
As I learn more about my adrenals and what it is I need to do to heal and recover I’ll share with you. You may have already walked this journey and have great advice for me. I ‘d love to hear from you.
In some ways, it seems so long ago when I first began getting sick and having intense pain from Lyme disease. It’s hard to remember details of those difficult days, pain and fatigue can do that to you.
One thing I clearly remember is the love and care my family showed me when my health was declining.
It wasn’t just my husband and children but also my parents and other extended family members. I realize how chronic illness can negatively affect relationships and especially a marriage so believe me I know how blessed I am.
When my symptoms were at their worst my whole life was impacted. I couldn’t keep up with my daily routine and most of the time I didn’t even realize it.I was in severe pain all the time and was completely wiped out with fatigue.
I was sure I had early onset dementia, I missed doctor appointments, didn’t know what to buy at the grocery store and couldn’t remember anything, including conversations that took place 5 minutes ago. I didn’t recognize where I was when driving on roads I had traveled for over 10 years. It was a very scary thing.My husband recognized that my health was declining and went into action mode.
He helped me figure out what I needed to do each day, encouraged me to make specific doctor appointments, helped in the evening with the kids, dinner, and cleaning and he prayed with me and for me.
Now please don’t get me wrong, not everything got done. Dinner would often be prepared processed meals or take out. The house didn’t get a good deep scrubbing and only the really important things got done.
I know this was a really hard time for my husband, after all, watching your spouse’s health deteriorate while not knowing why can be just as difficult as being the one who is sick.
I really didn’t think much about it until the other day when I read an article about someone’s experience with how they had been treated badly by family and friends when they shared the news of their illness.
While I didn’t realize it at the time, my husband showed great love and care for me and has continued to do so through my illness even as he was later diagnosed with Lyme and coinfections.
He believed me when I explained my pain and fatigue. He rallied our children together, made a chore chart and encouraged the children to help Mommy as much as possible.
My children were young but they helped as much as they could. They would get things for me, helped care for their new little brother, rubbed my neck, made me soup, and prayed for me.
When I finally got a diagnosis of Lyme Disease we didn’t know what that meant at the time but we were relieved that there was a reason for my declining health and felt that now we could address it and I would get better.
I remember telling extended family and friends who were also very supportive.
My extended family was empathetic and encouraging. They listened, they hugged me, they told me they’d be praying for me and that they were sorry I had to go through this. They asked me what this meant, what the treatment was and what my symptoms were.
They continue to be supportive and loving even still. I can’t visit as often as they’d like and sometimes I wouldn’t be able to make a special lunch we had planned but they’ve always been patient and supportive.
Close friends responded the same and have always been supportive and caring even though they didn’t really know what I was going through.
There have been those along the way who say that Lyme disease really isn’t that bad because after all so and so’s child had it and went on antibiotics and they’ve been just fine.
There are also those that continue to tell us that we focus too much on Lyme disease and it’s really not a big deal. They tell us that they’ve been bitten numerous times through the years and have never had problems.
Sometimes I hear that a spouse or parent is the naysayer or gets angry because their loved one “acts” sick all the time. Most of us have already experienced this with a physician or two and I’m sure many of us have heard, “well at least it’s not cancer!”.
There will always be “those” people in our lives who are not compassionate or supportive. There will always be those who don’t believe that our illness is real.
I’m hopeful that the more information we get out about Lyme & tick-borne diseases, about what it’s really like to live with it; how it affects a person, their job, their relationships, their life, that just maybe people will be more understanding and caring to their loved ones and maybe our doctors will believe us.
Sometimes loving others comes in the form of being there, asking questions, listening and helping out even when you don’t understand. We should all learn to love one another and appreciate those who love us.
Exercise is essential for good health and a strong body. Everyone knows it’s good for you, but what do you do when you’re too fatigued or it just hurts too much?
Before getting chronic Lyme Disease I loved to exercise. I loved how I felt afterward and the benefits of having a strong healthy body.
Eight Years ago when I began having chronic pain and fatigue I could barely walk around the house. Every step hurt, every movement hurt and every time I tried to do anything I’d injure muscles. My exercise habit came to a screeching halt.
As I began to slowly regain my health I knew that I had to begin exercising again but I just didn’t know what to do. The problem with those of us who have inflammatory conditions is that we’re more susceptible to injury. It seems to be the law of the land or at least in my land, that when I start to get into the habit of exercising something will happen that throws me off course.
In the early stages of my illness with Lyme Disease, I went to physical therapy. I didn’t know I had Lyme Disease and the options my doctors gave me for my chronic pain were either steroids or physical therapy. I opted for physical therapy.
My therapist had a hard time keeping up with my migrating pain. No sooner did she put together a schedule to work my legs and feet, then my neck, shoulders and back became the problem. She was patient and persistent but I didn’t find relief until I was properly diagnosed and had been on treatment for several years.
Since then, I’ve tried to stick with gentle exercises such as walking, stretching and mild strengthening exercises with bands.
Last summer, I woke up at a O’ dark hundred every morning to get in a nice long walk. I loved walking in the early morning. I enjoyed the sounds of the earth waking up, hearing the birds, seeing the deer and the beauty of the early morning sky all seemed to refresh me and give me the start that I needed for my busy days. I loved that I felt better throughout the day and even though I was still tired, I knew I had more energy than if I hadn’t exercised.
It was really hard for me to wake up every morning, I was already fatigued and just wanted to sleep. My body hurt in the morning and I could barely move. I have to stretch practically every muscle group before I can even walk down the stairs.
I pushed myself anyway because I am determined to not allow Lyme Disease or any other illness get the best of me. I refuse to stay in bed, to allow Lyme to take any more than it already has or to give up! I have a family to take care of and things to do. Lyme has already taken so much from me and as long as I am able I will push through.
By the end of last summer, I was stopped in my tracks by a terrible sinus infection that lasted 2 months. This thing would not go away and my head felt like it was going to explode. Well, that was that I stopped exercising and when I needed to exercise the most, which was through the dark and dreary winter, I didn’t.
I lost all of the stamina I had built up, I lost my energy and worst of all lost my motivation. My excuse was that I was busy, I didn’t feel well, I was in too much pain. I made the choice to not do that one good thing for myself.
When Spring came, I still didn’t want to exercise but one day I listened to Jamie Boggeln on a webinar. She was discussing healthy family habits. Jamie motivated me to get back up off my duff and do something good for myself. By taking care of myself I’m able to better care for those I love. She put her finger right on my excuses and said that I need to write down at least 3 solutions to every excuse.By taking care of myself I'm able to better care for those I love. #exercise #eatright #rest… Click To Tweet
I asked my husband to hold me accountable and to make sure that I exercised, he’s been trying anyway but now I gave him permission. I started out motivated and determined but as my pain started coming back I began to lean on my excuses again.
Thankfully, my husband is serious about helping me out and he doesn’t give into my excuses. Even when I hide out in the bathroom he tells me through the door that I’ll be glad I exercised, I need to do this and let’s go. He pretty much drags me out each night to go for a good walk. I’m not talking about the sweet, romantic let’s hold hands and go for a walk kind, this is walking at a good pace and going up the hill kind of walking.
It’s still very hard, it hurts, and I really have to push myself but in the end, I really am glad that I went.
What kinds of exercise do you do? How do you motivate yourself and how do you stay motivated so that you don’t quit? I’d love to hear your thoughts.