It’s the Little Things…and the Big

“‘The Lord bless you and keep you;
the Lord make his face shine on you and be gracious to you; the Lord turn his face toward you and give you peace.”’ -Numbers 6:24-26

Recently, while trying to cope with the profound fatigue that plagues me and other challenges of living with chronic illnesses, my childhood best friend reminded me… it’s the little things. So, in an effort to look for those little things…

I may not have the energy to go for a jog, but I can walk the block with my family.

I may not have the stamina to run full speed ahead in a family game of soccer, but some days I am blessed to kick a soccer ball around with my kiddos and play the goalie in a shorter soccer match.

I may not be in a fast-paced career anymore, but my body is more at rest and moving at the pace it needs to be right now.

I may not know the future, but I have the present.

I may not think the most positive thoughts at the moment, but I have His Word to give me hope.

I may not always be able to calm the storms of anxiety that afflict me, but I have a God who is bigger than my fears.

I may not see the sun shining, but the Son is always shining down on us.

I may not be living the life I imagined, but God has a plan for me-and His plan is far superior to mine.

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. -Jeremiah 29:11

Vaccine Anxiety

Dear God,

Last Tuesday, was one of the scariest moments of my life. For a year now, I haven’t so much lived, as I have survived, in a little bubble, not really exposing myself to the outside world for fear of the dreaded Covid. Tuesday of last week though, took me for a spin. You told me to do something I wasn’t expecting and it turned my world upside down. I was to get the Johnson and Johnson vaccine-something I hadn’t even decided if I wanted. Not only was I afraid of what I would be injecting into my body, and the lack of long-term studies, I was very concerned with how my chronically ill body would react. And just when I said “yes”, I sure wasn’t prepared for the steps I would have to take to get the vaccine.

I would have to go get an Alaskan State ID at a hole-in-the wall establishment that had no regard for mask wearing. Not only that, but I would have to risk my life by taking off my mask with several non-mask wearing people in the room in order to get my photo taken. Sitting outside in the parking lot, watching person after person stroll into this tiny building with no masks, made me angry at them for their selfishness and lack of regard for those of us with underlying health conditions. I was fearful for my life-so fearful, in fact, that I was in tears. Doubting that this was what I was supposed to be doing, I heard “go in”. Was this me? Was this really You? I wrestled. Then, I felt it. I felt Your peace wash over me-the type of peace that settles like a blanket of freshly fallen snow-the type that only You can give. You told me to put my entire life in your hands and it was incredibly frightening. I was wrestling with anxiety and with You, yet, I did it, shaking in my boots.

When I walked out with temporary ID in hand, I broke down. A few minutes later, I got the gumption to continue on the path You were taking me down. There was no turning back now. It was off to get the vaccine. Anxiety still present, I kept telling You I was choosing to trust that this was what You wanted me to do, but deep down, I was still scared. Going through the motions, doing my best to be obedient, I filled out the required paperwork and then the vaccine was given.

It was done, or so I thought-done, until the symptoms hit-body aches, nausea, headache, chills. I felt like I had the flu. Anger welled up inside of me. I had been feeling so much better lately. The chronic fatigue had improved some and the Lyme disease had felt more under control and now, I felt awful again. I was mad-mad that I was sick and was losing yet another day of my life and who knew how many more to being unwell. It triggered the years I’ve spent in bed due to chronic illness and missing out on life and on my family. Again, I wrestled with the anger and the feeling of little control.

Putting my fears aside, what I realize now, is that You were blessing me with protection. Not only that, You were giving me an invitation to live-which I haven’t done in quite some time. You were asking me to trust You with everything in my being-which I again, wrestled with. You were teaching me that You are in control and You know what is best for me-far better than I do.

I’m sorry for doubting you, Lord, and for struggling to trust You. Please forgive me for fearing and wanting to have control, when You are the One who has the ultimate control. You know best, God, and so I put my life in your hands.

Fresh Juice on Squeezin’ Lyme

*Fresh Juice on Squeezin’ Lyme will consist of post updates I will write on occasion regarding what I’m learning while battling persistent Lyme disease and other chronic illnesses.

Praise the Lord, my soul, and forget not all his benefits— who forgives all your sins and heals all your diseases, who redeems your life from the pit and crowns you with love and compassion, -Psalm 103:2-4

Having health is an incredible blessing. As someone who lives with persistent Lyme disease along with other chronic illnesses that go hand in hand, I have my good days and I have my really, really terrible ones. (In a previous blog post here I shared my backstory and my journey of motherhood battling persistent Lyme disease) My quality of life has improved in the past few months, due to some new treatments. It has been such a long time coming-twenty-seven years long, and recently I’ve had more good days than bad, which I am so very thankful for. I still have to pace myself throughout each day, but I’m able to do much more than I was. When I am feeling well, I need to remember though, not to take those precious present moments for granted, because they aren’t guaranteed.

The other day, was a stark reminder that I am still living with these insidious illnesses. Not only are Lyme disease and these other conditions complex, Lyme is especially stealthy and symptoms will hit when I least expect them. Feeling like I had the full-blown flu and bedridden the majority of the day, I could hardly stand to be in my own body. It’s days such as these, that I can’t forget how truly blessed I am when the fatigue has subsided and hasn’t sucked everything from me and my joints aren’t aching constantly, when I can smile and laugh because I am able to live somewhat, rather than just survive. These aren’t illnesses for the faint of heart. Fighting persistent Lyme disease, along with other chronic conditions requires the endurance of a warrior, but more importantly, it requires God’s strength. Lyme disease is tricky to treat and often needs a multi-faceted approach.

Trying to describe life with Lyme to others who haven’t gone through it themselves, is an extremely difficult task. Just touching the surface of this illness, it would best be described as “pure suffering and misery”. To say the very least, it can be unbearable. It’s a kind of bodily torture where thoughts arise as to whether continuing to exist with these symptoms is even possible. The fatigue and weakness is incomprehensible to those who haven’t experienced it. The I-don’t-know-if-I-can-even-crawl-out-of-bed-the-few-feet-to-the-bathroom-and-back-to-bed, kind of fatigue and weakness, could be mentioned, but is an understatement. There have been days in the past, where help was needed and it seemed like death was sitting on my doorstep waiting to devour me. And on more than one occasion, I have actually thought I was dying. Those were the times I couldn’t fathom how anyone could continue to endure that amount of agony day after day and still be alive. While there are many other symptoms, fatigue and weakness are two of the biggest I’ve fought on a daily basis for as long as I can remember, until more recently.

I thank God for the new treatment regimen that has made my life and those around me a little easier. And while I don’t ever want to experience the debilitating symptoms I’ve gone through for years with these chronic illnesses, the really awful days do help me to remember that the present moment is just that-a present from My Father. Health is easy to overlook and not think twice about, until it’s gone. It’s those days though, when my symptoms let up and I feel healthier that I can see just how rich I am. To have health, is to live, not just survive. And that is a huge gift.

So let’s remind ourselves to live wisely and cherish each moment we do have, thanking Him for the present, because we will never have those same moments again.

Be very careful, then, how you live—not as unwise but as wise, making the most of every opportunity, because the days are evil. -Ephesians 5:15-16

Illuminate Me, Lord

Here’s a not so pretty poem I wrote about chronic illness in July of this year. I was really struggling, y’all. Having persistent Lyme disease, I don’t always know what each day will bring. It’s the nature of this beast. Thankfully, the past few months have been significantly better than the day I wrote this. This last summer, I was hanging by a thread of hope.

Waves of hope ebb and flow
as thoughts of death come and go

Held hostage to weakness
Pushing to merely exist

Fatigue the enemy 
Sucking life from this body

Beaten-slammed to the ground
No energy to rebound

A system waging war
No fight left here anymore

Pain shoved so far deep down
No longer can I be found

This illness has battered
My life long gone and shattered

Broken pieces of me
Shards of who I used to be

Nothing left but a shell
from days lived in brutal hell

Black as dark as the night
Alone, in bed, out of sight

Too frail to stop these thoughts
Into the abyss I drop

Undertows drowning me
A hope-filled heart now empty

Illuminate me, Lord
Fill me with Truth from your Sword
Copyright © 2020 Aimee Phillippi

Life with Lyme

*I wrote this back in May of 2019 for Lyme Disease Awareness Month. This is a big piece of my story, so I thought I would share it again on my blog in hopes that it might help those living with similar struggles. I still have my good and bad days, like many surviving chronic illness, however, the past few months my health has been slowly improving.

Being chronically ill requires a strength that I can’t explain. Although our bodies may be weak, those fighting this battle are among some of the strongest souls I know because each day we are at war with our bodies. Pushing just to exist, let alone parent our children, we climb mountains everyday.

I’ve been climbing mountains for 27 years and this is my story. It’s a story of surrender and acceptance, survival and perseverance. It’s a story about living with persistent Lyme Disease.

Prior to my diagnosis a year and a half ago, I was working as a Social Worker with Child Protective Services. My plate was extremely full, I was under a ton of stress and drinking up to 12 shots of espresso per day to combat the neverending chronic fatigue. 

Profound fatigue was something I have struggled with since I was thirteen years old. Before having our two daughters, I dealt with numerous “crashes” over the years. My body would give out and I would be bedridden for 18-24 hours a day, up to three months at a time. Doctor after doctor left me with no answers though, so I would eventually peel myself out of bed again and push through the fatigue in order to live life the best I could. That’s when caffeine became my best friend. But caffeine only masked my symptoms. The underlying fatigue remained. And as my tolerance grew, I had to increase my intake. I knew I had to stop, but wasn’t sure how I would function.

It wasn’t until I got off of the copious amounts of caffeine I consumed each day, that I could see how truly dire my condition was. Continuing my search for answers, I fought harder, yet still there were no concrete answers. I left each doctors’ office with a little less hope than when I walked in. 

Two years ago, I saw a Naturopathic Doctor who took the time to dig into my medical history and test me for Lyme Disease. The standard test which is often inaccurate, came back negative. Showing little improvement, she looked over my tests again and referred me to a Lyme Literate Naturopathic Doctor who encouraged further testing.

It was at this point that I finally had an answer: persistent Lyme Disease. As I sat in her office, my ND asked me how I felt about the diagnosis. I had a lot of mixed feelings. Having known in my heart that there was something very wrong, I was so relieved to finally have an answer. After the relief, came anger-towards the 20+ doctors I saw who missed this. Then, fear set in when I began researching Lyme Disease, learning just how complex and difficult it is to treat, that medical insurance covers little to no treatment, and that the few doctors knowledgeable in Lyme Disease are usually not covered by medical insurance. 

It’s been a year and a half since my diagnosis and the fear still comes in waves, intensifying on my worst days, days when I am so weak that I can hardly move my limbs or even my mouth to speak, when just brushing my teeth or taking a shower feels like I’m climbing Mt. Everest, when my joints are aching like I have the flu, and I feel like my brain is out to lunch because the thoughts I had the second before, have completely vanished, when existing feels like it’s stealing more energy than my body can produce.  

One of the hardest parts of this journey is the treatment. As treatment works to kill the bacteria that causes Lyme Disease, there is a die-off reaction in the body, called a “Herxheimer Reaction” or  a “Herx”. A “Herx” can make a person much sicker, before there is improvement. “Herxes” happen often for me during treatment and intensify my already debilitating fatigue and weakness.

But, it’s not just the physical symptoms and fear that take its toll. It’s other emotions too. There is the grieving of dreams I once had for myself and my family. There is the depression that settles upon me when I’m at my sickest, wondering if the unbearable fatigue and weakness will ever end. There is the guilt I carry from not being able to meet my own or my husband’s expectations for our family. 

Yet, despite the roller coaster of physical symptoms and emotions, I have learned to manage as a mother and wife. Some of the tools that I use on a daily basis are:

  1. Surrendering and leaning into God, first and foremost, by reading His word, Bible journaling and memorizing scripture. I’m not strong enough on my own to survive this illness. I need Him every moment of every day. 
  2. Pacing and prioritizing-Because the fatigue is often so severe, I must constantly pace myself, prioritizing and choosing between daily tasks that most people take for granted. On my worst days. I may have to decide between a shower or making my kiddos lunch. Of course, my shower is what waits because my kids always come first.  
  3. Patience-One of my toughest lessons has been patience with myself and with my family. When my symptoms flare, it’s easy to become grumpy with the ones I love most. I am still learning to have patience with my husband when he’s struggling because the weight of my illness and extra household tasks are wearing on him, patience because he will never be able to fully comprehend the relentless fatigue, patience with my kids because they’re being kids and patience with myself and the recovery process, because despite doing all I can to heal, I still feel awful much of the time.
  4. Gratitude-I count my blessings each day in order to stay positive. 
  5. Acceptance-This is ongoing. I’m learning to accept where I am and that what I’m doing is enough-even though it’s nowhere near what I want for myself and my family. 
  6. Setting alarms multiple times per day. I do this because my short-term memory has been affected and I forget things often. 
  7. Acting-I sometimes feel like my own puppeteer, forcing my arms and legs to move when by body is telling them not to, or laughing and smiling, when inside I feel like I’m dying. I “act as if” because my will to live is stronger than my will to die. I “act” and push because I want my family to have some sort of normalcy. I don’t want to be sick and I don’t want to wallow in my illness and pain-I want to live, not just survive, so I “act as if”, hoping that one day I won’t feel the way I feel. I “act” because being vulnerable and letting people see the real pain and struggle is sometimes just too much. I “act as if” because accepting that this is my life and my life for my family is really, really hard. And I “act” because on the outside I look fine, even though on the inside, I feel so far from it and people just don’t understand this. 

So if you know someone with an invisible illness, be that person who takes the time to really listen. Show kindness and compassion always. We are fighting battles you may not be aware of and you likely may never fully comprehend. Try to see the mountain we are climbing every day.