chronic lyme disease with a taste of nut
Long time, no write, my friends! Sorry to have taken so long to get back in the saddle, but I’ve been sicker than usual since my last LLMD appointment on September 10th. Throw in two new antibiotics, an anti-convulsant that tried and failed, and the new symptoms of Babesia showing up with a vengeance. and I have not been able to get on the laptop to write. But…this is an important week – it’s Invisible Illness Awareness Week (September 28- October 4) and as a blogger I have been waiting for this week for a while. Thanks to the amazing Lisa Copen of Rest Ministries, the call for blog entries about invisible illnesses and #myinvisiblefight was made and I have eagerly stepped up to the plate. Pardon my mixed metaphors. Sleep eludes me; you understand. Part of IIWeek2015 is blogging the following list: “30 Things About My Invisible Illness You May Not Know.” Perhaps you know my answers, perhaps you don’t. I hope that it enlightens you to human suffering at large – we never know the battle someone is facing. The person you are kind to – you never know if that is the only kindness they will receive that day. I write this, advocate for this illness, not so my voice is heard, but so that this illness may be better known and understood and, Lord willing, accepted by doctors, scientists, and everyone.
1. The illness I live with is: Chronic Lyme Disease (aka Multi-Systemic Infectious Disease Syndrome, coined by Dr. Richard Horowitz. I like the latter name because this involves every single system in your body)
2. I was diagnosed with it in the year: 2015
3. But I had symptoms since: I have had Bartonella (co-infection of lyme) symptoms since I was a child but the severe symptoms came on in July of 2014 in the forms of fibromyalgia, chronic fatigue syndrome, and neuropathy
4. The biggest adjustment I’ve had to make is: Feeling like my brain is betraying me by losing memory and ability to speak and think coherently. Also, losing the ability to do things I took very much for granted
5. Most people assume: I’m exaggerating my symptoms, though few have come right out and said it
6. The hardest part about mornings are: sitting up in my bed and beginning to move around
7. My favorite medical TV show is: I don’t have a favorite medical TV show. I am a frequent medical web site searcher, though. And blog reader! My favorite blog for lyme is Will There Be Cake.
8. A gadget I couldn’t live without is: pen and notebook – that will forever be my answer, illness or no
9. The hardest part about nights are: my increase in fever, chills, drenching sweats, nausea, severe depression and despair and also – insomnia! Ugh!
10. Each day I take _36_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: think that it is vital with chronic lyme/MSIDS to consider all options as a treatment option because so much needs to be hit from every conceivable side. I foresee myself using more herbal treatments in the future (and lymphatic drainage massage)
12. If I had to choose between an invisible illness or visible I would choose: I really hate to answer this because, of course, I would choose to have neither. Because it’s important to answer this, however, I must say I’d choose to have a visible one. Between not being believed and being judged by people you don’t know, doctors, loved ones, and friends – all who genuinely mean well – “looking fine” while being severely ill is one of the most heart-wrenching things I have ever had to go through.
13. Regarding working and career: My illness has wrecked my job and inconvenienced my co-workers, to say the least. I struggle with being able to work and realizing new limitations daily. Regarding my dream of writing and teaching, I have had to put that on hold as well.
14. People would be surprised to know: I am a lot more hopeful than people think and fight a lot harder than they realize. Those closest to me might think I dwell or ruminate, but because I’ve spent my worst illness moments alone in my room, I’ve realized just how much fight I have in me. Chronic lyme has killed many by suicide as well as other complications from what it does to your body. I understand why some see no way out. That is hard for me to admit, but it’s true. That doesn’t mean I agree with it. If I was not fighting with every fiber of my being, I would have succumbed already. I’m a lot more determined than I knew, myself, and I don’t think many know just how deep this battle goes.
15. The hardest thing to accept about my new reality has been: Forgetting common words, people’s names, and the next thing I want to say. More than that, though – letting down my children and the dynamics in my family changing. Having them see the very worst of me and how my limitations directly affect their growing years. Also, the level of isolation this has created is staggering. I also see these challenges as some of the deepest blessings and things that can teach me as well as my family. I’m being taught humility and grace and my family a level of compassion they wouldn’t have known otherwise.
16. Something I never thought I could do with my illness that I did was: Continue to write coherent blog entries! Though talking is a whole different matter and looking at the computer screen is becoming harder to do, I’m so grateful to find that writing prose is still within my capability. My prayer life has also become a lot deeper.
17. The commercials about my illness: What commercials? Never in my life had I heard about chronic lyme disease. Sure, I heard about lyme disease, as in “bit by a tick? Oh, that stinks! Go get some antibiotics!” but I never knew such a treacherous and political beast could come out of a tiny tick. And I certainly never heard of the millions of undiagnosed, misdiagnosed, and turned aside people suffering with this.
18. Something I really miss doing since I was diagnosed is: Going out to eat, going to church, singing at church, taking walks, riding my bike (I didn’t do it that much before but boy do I miss it now! ha!), being at a busy event, traveling. We were supposed to take the kids to House on the Rock – that can’t happen now. Maybe in the future, Lord willing.
19. It was really hard to have to give up: the easy answer is giving up yucky processed food (that tasted amazing and was what most everyone else eats). The harder answer is my independence.
20. A new hobby I have taken up since my diagnosis is: returning to collage-making. I’ve recently been gifted with a year’s subscription to my favorite magazine from my dreamy teenage years, Victoria Magazine, (squeeee!! Thank you, Karen!) and I look forward to lazily creating cozy collages of gardens, tea, and lace.
21. If I could have one day of feeling normal again I would: take my family to England and Ireland and bask in the beauty I always wanted to show them
22. My illness has taught me: to not take one single thing for granted. Not blinking, not eating, not walking, not thinking, not talking, not lying down, not sitting up, you get the picture.
23. Want to know a secret? One thing people say that gets under my skin is: “You look so good! Glad to see you’re all better.” Looks are deceiving. On my “good days” I am in much pain and confusion. I love receiving compliments and never want to be ungracious, but each day is a fight for to be seen and heard. Though I am thrilled to look good and seem fine, it’s hard to not be known on the inside. I know that God knows me, though, and one of my big lessons is that that is enough – to be known by Him.
24. But I love it when people: notice something I’m doing and mention it or notice a need and ask about it (thank you Nic, Holly, Karen, and so many others). Also, when someone takes the time and researches chronic lyme/MSIDS a little and asks me a question about something they read – that means so much to me.
25. My favorite motto, scripture, quote that gets me through tough times is:
When I am afraid,
I put my trust in you.
In God, whose word I praise,
in God I trust; I shall not be afraid.
What can flesh do to me?
Psalm 56:3-4 (ESV)
26. When someone is diagnosed I’d like to tell them: Find a balance between becoming your own advocate and leaning on the Lord for everything. Seek out people with the illness and befriend them. They will become wonderful friends, mentors, and teachers. You will learn to care for yourself because you will be forced to. Get ready to be wrecked. This can be a good thing. It is a good thing. Being pruned, while painful, ultimately yields much fruit. Ok, I don’t really tell them all that but it’s what I believe and wish I could tell them in one fail swoop.
27. Something that has surprised me about living with an illness is: How much I have learned about the human body – I know words that I would have never known existed! I’m also surprised at how slow life has become – by force. Lastly, I always heard of suffering bringing great blessings, but when suffering knocked on this door, I wanted to say, “I know that already in theory, thank you; I don’t need the first-hand experience.” Though I am very much in the middle of this process and in the beginning of this lyme journey, I recognize the enormous blessings that are blooming from these ashes (did that mixed metaphor make you as dizzy as it made me?).
28. The nicest thing someone did for me when I wasn’t feeling well was: one family brought over surplus stuck from their church’s food pantry. Another woman who I had not met before volunteered to bring me one meal a week for a few months. This woman became a good friend and is someone I never would have known had she not volunteered to help out a stranger. The most touching thing was what my husband did when he was recently at a complete loss as to what to do or say when I having severe symptoms: he reached for the Bible and began reading. Instantly, I felt calmed and soothed.
29. I’m involved with Invisible Illness Week because: Everyone wants to be seen and heard. Those with chronic lyme fight a specific battle. We not only battle the spirochetes, bacteria, etc, but we battle a backwards medical system and community that denies the existence of chronic lyme, despite the obvious existence world-wide.
Many have died from this and those voices go unheard. If you go into a traditional medical practitioner’s office and say you have a broken arm which shows up on an x-ray, they are quick to patch you up and provide you with the care you need. But walk in and say you have chronic lyme/MSIDS and you will be belittled, scoffed, even yelled at. I’m involved with Invisible Illness Week because I need people to know about this illness so they don’t have to go through this, too. There are so many illnesses that fall under the larger umbrella of chronic lyme and people don’t know it. I don’t want the spotlight to be on me-being-sick, but rather what this illness does and what you can do to prevent it in your lives and in the lives of those you love. Reaching even farther beyond that, however, is the truth that in our most broken places God resides and there our strength and beauty can shine ever so much brighter than any circumstance of suffering. God makes beauty out of ashes. He’s a good, good Father. It’s Who He is.
30. The fact that you read this list makes me feel: seen and heard. And I can’t begin to thank you.
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