A Woman’s Journey with Lyme Disease

 

 

journey with Lyme disease

I ‘m honored to have the privilege to interview Kami Lingren from Living Grace Blog. She is going to be telling us about her journey with Lyme disease. This is the fifth installment in a series of interviews. You can see 1,2 and 3 here and 4 here. I really love Kami’s inspiring articles. I’m glad I get the chance to know her and her story better.

My Fruitful Home: What is the name of your illness and how long have you had it?

Kami: I have chronic Lyme disease and we believe I’ve had it since as early as age 6 or 7. My symptoms first began then, but my health took it’s first big turn in 2010. I’ve been disabled since 2013 and was officially diagnosed with Lyme in 2014.

My Fruitful Home: Wow! I can’t believe it took so long to get diagnosed! That’s a long time to have symptoms. That must of been so tough.  Are you married, and do you have children?

Kami: I married my husband, Trevin, in 2012. We have one sweet baby in heaven, who we miscarried the summer of 2015. My heart goes out to all the women who have experienced this heartbreaking loss. For now, we have big love for our four-legged fur baby, Tooka. She is a great dog and one who keeps me company and offers some of the best entertainment on my long days home alone! 😉

My Fruitful Home:  I am so sorry for your loss. It is one of the hardest things to lose a child whether that be through miscarriage, still birth or after they’re born. My first child, a daughter became seriously ill at six weeks old with a virus that may contribute to Chronic Fatigue Syndrome. She later passed away at the age of two. We were blessed with two more children, a daughter and son, who are now teenagers. We will never forget her. I am glad you have a furry companion to keep you company. They can be a great comfort. I have a toy poodle who is my shadow. Now that my daughter is in college and my son a senior I hardly see them, so it’s nice to have someone who needs me.  How does it affect your daily life?

Kami: My illness has drastically changed how I am able to live my life. It limits how much activity I can engage in on a day-to-day basis – and by activity I mean: doing dishes, taking a shower, taking the dog out, etc. Quite the change at any age, let alone when it first began in my late twenties. I’ve had to adjust my expectations of myself and have been learning how to set healthy boundaries for myself when it comes to making plans, having guests, travel, and so much more. I make it through every day and many nights I marvel at just how much strength that takes!

My Fruitful Home:  It does take a lot of strength. I think it’s hard for people who don’t deal with a chronic illness to understand how daily tasks can take their toll on us, not to mention extra activities. I commend you for you being able to adjust your expecations.  How do you financially support yourself?

Kami:  My husband has been the primary breadwinner of our home these last few years and I’ll forever be grateful for his unbelievable support and dedication to working hard. I have made an effort to contribute in small ways over the years, but recently opened a brand new design shop on Etsy (eightfourteendesigns.etsy.com) that I’m really excited about. I offer wall art printables, Etsy shop design, and blog headers for websites. I also have smaller side businesses and affiliate programs I belong to that will also help with financial support. My treatment costs are very high and insurance covers little to nothing of medical expenses. So I am doing whatever I can in my sick state to help us stay afloat! My goal is to channel everything I’m learning into helping other chronically ill women and men start their own online businesses and I plan to do so through my blog, Living Grace.

My Fruitful Home: I can’t wait to see the work you’ve done. I’m glad you have a husband who is able to support you. I’m grateful for my husband as well, for all the hard work he has done and the long hours he puts in to make sure we have insurance and other necessities. It doesn’t seem fair that the things that will usually help our illness are not covered by insurance, but we’re to sick to work the hours to pay for them. Do you have any hobbies?

Kami: I love to write and do anything creative. In the past I’ve crocheted, made handmade cards and canvas wall art quotes, and now design for businesses. I used to love to read, and though I still do it has become much more difficult in recent years of sickness. So listening to podcasts has become a newer fave!

My Fruitful Home: I love podcasts! Sometimes I don’t have the energy to read or even watch tv, so I can sit and close my eyes and listen. Here are some of my favorite podcasts. I would love to know what your’s are. You can tell us in the comments if you like. How do you cope daily?

Kami: I have found such comfort in online community groups as well as friendships I have made with others who fight illness. It’s so important to have a “tribe” who gets it, or who at least tries hard to be understanding and compassionate. My husband is a huge support and honestly my dog offers something unique through simply being in the home with me when I’m alone. I feel a little less isolated. Writing, either on my blog or to others who are sick, helps me process this life and all the very real feelings and grief that come with it. I am so thankful for those connections and that safe space to unpack the hard of illness.

My Fruitful Home: I definitely agree that it’s important to have a tribe. I find that even though I’ve had this illness for a long time I’m still creating my tribe. My parents have been a huge support. They don’t live that close, but try to help in any way they can, and most importantly they just listen. My husband is there for  me too. I’m fortunate to be able to get to church once in a while and have friends there that I get together for lunch with on occasion.  On days that’s not possible we’ll talk on the phone. I also have met so many wonderful people online as well. How do  you manage your blog with an illness?

Kami: I am still learning to balance this! I typically do my best when I have a running to do list and carve out a set amount of time for tasks with a timer. Catching up on emails, responding to comments, scheduling blog posts and social media engagement, creating graphics – it all takes time. And if I want to do my best at each thing I have learned I need to compartmentalize each task so I don’t get overwhelmed and distracted. I also have to allow myself to say “I can’t do this today” when my body is struggling extra hard or I have other things vying for my time that are going to take all my energy for the day. My health and well-being come before any growth or tasks I want to accomplish for my blog.

My Fruitful Home: I’m glad you have made your health a priority. I notice I get very distracted and if I don’ have a plan I’m kind of all over the place.  What  is one thing you want people to know about your illness?

Kami: Lyme is preventable. Which means anyone can get it. It breaks my heart to think about the thousands of people who are currently misdiagnosed (as I first was, with multiple sclerosis) and could be treated appropriately. It only takes a few extra seconds to spritz on a natural tick repellent spray for you or your children, so I urge you to take that extra precaution when outdoors. Check your pets over for ticks before letting them inside your home to avoid any contact. It’s worth it to spare yourself and your family from this awful disease!

My Fruitful Home: Thank you for reminding us about protecting us from this devastating illness. A few months ago my son woke up to take a shower and noticed there was a tick attached to his leg. It must of been there all night which freaked me out. It then happened again about a month later. He likes to take walks in the woods. I told him he needs to be careful and wear long pants and apply bug repellent. Now, whether he’ll do it or not is another question. It can be nerve wracking having teens because you can’t control what they do. My husband got a little kit for him with stuff to apply. We were fortunate that nothing came of it. Do you have a support system or outside help?

Kami: I have some great friends and family as well as an amazing community I’ve connected with on Instagram. Though I’ve never met some of the friends I’ve made there, the relationships are so dear to me. Our parents have been a huge support, as well as some other family members. While there have been many relationships that have faded or disappeared altogether in this illness life, we are grateful for the ones who have dredged through the hardest parts of this life with us. We know not everyone has even a small group of people who do that for them so we know we are blessed.

My Fruitful Home: Yes, exactly. I am grateful too for the people that are able to give me support. I have one more question. Do you have a favorite inspirational quote, scripture, or song that helps you get through the day?

Kami: One of my favorite quotes is the following by Ijeoma Umebinyuo. It’s a reminder to me that healing, of any kind, is a process. 

Healing comes in waves
and maybe today
the wave hits the rocks
and that’s okay,
that’s okay, darling
you are still healing
you are still healing.

My Fruitful Home: That’s beautiful Kami, and so true. Thank you so much for taking the time to answer these questions. I’m sure you have encouraged and taught many people what it’s like to live with Lyme disease and ways it can be prevented. Please go check out her blog and new Etsy shop!

You can find more ways to connect with Kami on her social media channels: Facebook: http://www.facebook.com/kamilingren19 ,Twitter: http://www.twitter.com/livinggraceblog , 

Instagram: http://www.instagram.com/kamichristina

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10. Do you have a favorite inspirational quote, scripture, or song that helps you get through the day?
One of my favorite quotes is the following by Ijeoma Umebinyuo. It’s a reminder to me that healing, of any kind, is a process. 
Healing comes in waves

and maybe today
the wave hits the rocks
and that’s okay,
that’s okay, darling
you are still healing
you are still healing.

Comments

  1. says

    What a wonderful interview! I completely understand and relate to Kami’s challenges. My two sons and I all got ME/CFS in 2002-4. One of them recovered after 10 years (yay!) but the other is still sick, 12 years later (and me, too). I had Lyme and thought I got rid of it, but it still flares up a bit every few years. My son wasn’t so lucky – he has 3 different tick infections which went undiagnosed for over 3 years because we thought it was “just” his ME/CFS.

    I admire Kami’s strength and persistence and hope the treatments help her!

    Sue

    Living with ME/CFS

  2. says

    How interesting to read your interview with Kami! I’m sorry for her challenges, yet as followers of Jesus, we can always praise God and thank Him for all things. Only then do we have that peace that protects our mind and heart. (Philippians 4:6-7

    • Tanya says

      I agree that we should always praise God. I think we can thank him in all things not necessarily for all things. But there is always good that can come out of it that we can be thankful for. Just the way I look at it. Thank you for sharing.

  3. says

    What a wonderful interview! Kami is such an inspiration to me. I also have late stage Lyme disease and can identify with her struggles and life so much. I truly enjoyed reading this. Sharing! =)

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