Lately I’ve been struggling with honesty. Not honesty like lies, but honesty in putting forward personally what having Lyme is like. I don’t like to be negative, play a victim, or be that person that has nothing else to contribute but there’s so much more to Lyme than feeling bad and to pretend its all about positivity and strength isn’t telling the whole story.
Today, I had to watch my Mom head out on a road trip by herself that was planned for the two of us. All I had to do was get to Pennsylvania, attend one dinner and get home and I had to admit that I could not even do that. As she leaves, she assures me that she is not mad or upset in any way but as she drives off the overwhelming familiar feeling of being a failure is as strong as ever. These feelings come when I lost my job, I lost the ability to drive safely, every birthday I’ve missed for friends, every family event I’ve forgone, etc etc. All things that were not a choice but I had to admit.
People who don’t live this ask me why I’m not used to this yet. Honestly, I don’t think anyone can get used to feeling like a failure. No matter how many advances in Lyme you make there will always be a certain amount of things you can’t control. Instead of getting easier, its more like rubbing salt in a continuously opening wound. I think Lyme patients can all agree that the emotional pain from losing control over your choices is far worse than the symptoms.
Why I love people with Lyme and fight so hard for change is because these people still stand up and fight back after days to years of this. While I can be honest that I will always fight back and I believe I have done everything I can do to live the best life I can, I also have to be honest that I feel like a failure every time Lyme takes a piece of my life.
I’ve been struggling to write about how this week has gone without it sounding like a pity party, but I think I just need to be honest and admit it kind of is.
The goal was to return to my city, socialize with friends for my birthday and see how I held up trying to return to a somewhat normal life, then go to Pennsylvania for a cousins wedding. At this point 90% of those plans were cancelled, not a birthday thing was done. I was not feeling great coming off an antibiotic round so I waited to see my friends. My birthday night I started into what was the beginning of a brutal herx paired with severe stomach pain. After a few days the herx ebbed but the stomach pain was more intense. Finally Friday morning, I woke up in screaming pain and almost threw up just trying to get water down. It was time for a hospital. After a very long wait and more than a few tears, the ER doc diagnosed me with a intestinal bacterial infection and sent me on my way with a script for more antibiotics. He was enough to check with my Lyme Doctor that this was the right move for me.
Its been 5 days of treating the stomach infection and the pain is down to mild discomfort but the gastro issues wont leave and the heavy antibiotics are making me dizzy. On the plus side I’m sleeping about 14 hours a day so I can avoid some of the symptoms.
Now that I’ve missed most of my plans I have to decide tomorrow if I will miss them all and cancel my plans to go to PA. I very much want to go see my family, but it really is miserable to feel awful and try to fake it.
As most people who are chronically ill know, its a constant game of guessing how bad you will feel. Do you push through or forgo the chance. I think I will sleep on it and try to think optimistically. I am a warrior, but even warriors need recovery.
Between being on the road to see my doctor, visiting my friend in the process, Lyme Warrior and Beautycounter, its been a busy few weeks! I find myself in the vicinity of working 10-14hr days from my computer but I can’t stop because of all the fantastic feedback and motivation I am getting from Lymies!
I am so appreciative of every purchase, repost, volunteers for projects, etc. I really should be taking more breaks but it makes me so happy to be working with everyone to change the face of Lyme. We have started the ball rolling slowly but it is defiantly rolling.
I can’t wait for each of the new projects to share them with you all and then the world.
With all your voices, we are undoubtedly going to put an end to the silent epidemic of Lyme. Thank you so much to everyone who has supported this and made it possible!.
Lyme Disease is toxic. What was more toxic to my health was taking away my reasons to wake up in the morning. For so long I spent every day in bed, feeling bad for myself and watching days of my life pass. One day I woke up and realized enough was enough.
Lyme Warrior was born from the frustration of my limitations. Ones that still exist but with technology and some spirit I’ve found a way to circumvent. Every day I log online to work and interact with my awesome team who want to make a difference even while they are suffering. The ability to work and contribute has helped my healing more than any pill, supplement or tincture ever could. Lyme Warrior may not be a national success in its first 2 weeks, but it gave me my fight back.
Further, this is what I want Lyme Warrior to give to others. The chance to channel all the knowledge, education, and special talents of all the warriors into a voice to fight back. In the numbers that we clearly have we can unite and create change. I hope anyone who has that fight will reach out to me so we can work together to change the face of Lyme and prevent others from knowing the hardships we live daily. Sitting in silence is no longer an option for me.
In my hometown, we had a ton of quilts, at craft shows, fairs, etc they were everywhere. I never thought much of them. When I thought of the “Share A Heart” campaign for Lyme Warrior I figured how hard can quilting be.
I bite my tongue now, quilting is a lot of precise work. From my very short experience in quilting to create Lyme Warrior’s heart pillows I now have an extremely high appreciation for people who can make squares, much less a quilt. So from this inspired a wonderful woman to reach out and offer to make a quilt for Lyme Warrior. Now I’m hooked and I want to have an exhibit combining these two new things I love.
Lyme Warrior is accepting lovingly made Lyme Warrior quilts. Quilts can be any shape, size, or color. We just ask that they have a warrior or Lyme theme. Quilts will be put into a gallery event or exhibit to gain awareness. Once the events and viewing are over, quilts will be auctioned with proceeds funding research for Lyme Disease.
Further if you are a Lyme patient and can just make squares, I will be accepting those and putting together a quilt of just squares from Lyme patients.
If you know anyone who quilts, please reach out to them to see if they would be interested in helping us with this project. We are getting started now with the hopes of having this event next May for Lyme Awareness Month 2017. Thank you so much to everyone who has shared and contributed. ❤
The first time I saw this article it annoyed me. After the millionth post, what the fuck. Yes, I understand that raising children must be very hard and draining. However, when she says should I really throw out $30 of sunscreen, one she is now aware is toxic to her child’s health. THE ANSWER IS YES. Your child’s health is worth $30. And again, I can commiserate with money being tight but , don’t just pick stuff out of the bargain bin at Walmart. Take 5 minutes to google safe options that you can make at home for less. You want time with your kids, teach them to do it.
When you chose to be a parent you take on the responsibility of all these choices, hard, time consuming, etc. But what above all makes me so frustrated is all this complaining and not a thing being done about it. We know our skin care products are toxic, we know vaccines are causing health issues, we know processed foods are making us sick. DO SOMETHING ABOUT IT.
Join a company fighting these things, use your article complaining to put out a petition, JUST DO SOMETHING! Instead of whining at the injustice of living in a toxic world do something to make it less toxic for your kids and their kids. The most toxic thing in this world is people not standing up against what is wrong.