I have been quite overwhelmed with all that I have to do and remember for my treatment protocol. I can’t keep it straight. I feel awful and the daily B-12 shots don’t seem to be doing their job. I am beyond worn out fighting this battle. I am switching up my meds soon and I hope the next antibiotic will work better for me. I want more good days. This is not the road I want to be on… it seems never-ending.
Some days, I don’t know how to fight.
Some days, I absolutely loathe talking about Lyme Disease.
Some days, I want people to look at me like they used to and not with the sympathetic, “I feel so sorry for you” look… I hate that look.
Some days, I don’t make many plans because I dread that I will have to cancel them.
Some days, I desperately miss the body and mind I once had that was strong and capable, sharp and dependable.
Some days, I want to think about anything but how my body is failing me.
Some days, I just want my old life back… I miss it more than usual today.
God knew the groanings of my soul this week. I heard this song, for the first time today, and the words fell deep into my heart and gave me peace. I hope it encourages you, no matter what you are facing on your journey. I am thankful that the rest my Father gives is better than any medication, natural remedy or treatment protocol. I am turning my eyes upward and with fragile, trembling hands I cling to the hope that only He can give.
“My prayers are wearing thin. I’m worn before the day begins. I’ve lost my will to fight. I’m worn so, heaven come and flood my eyes…”
I thought I would post a “love” post today since this is Valentines week, so please bear with the sentimentality… I don’t do this very often. This month is pretty special to me… not because of Valentines Day, which to be honest – I’ve never been a fan, but because my husband was born on February 28th. We were born nine days apart in 1979, just hours away from each other in Texas. I am thankful he was born.
I came to a startling revelation the other day… well, two actually. The first one hit me on a rainy, dreary day as Ryan and I were sitting in a doctor’s office in Columbia, Missouri. Ryan had just driven me to my first LLMD appointment, all while he was suffering from the worst flu he has ever had. While reviewing a temperature log that I filled out prior to my visit, the doctor asked if my temperature had always been relatively high or if it had changed with my illness. I shrugged my shoulders and started to say that I had no idea, when Ryan interrupted and said, “Her temperature is usually 97.9… when she was healthy, it always ran around 97.9.” I stared at him in disbelief. I didn’t even know what my temperature was when I was healthy, how in the world did he know that?? I kind of dismissed it as being married a long time, but later during the visit, I noticed that he knew my blood pressure, every medication I’ve been on for the last 10 years, and he even answered questions for me when I couldn’t think of certain words or examples to give my doctor, he immediately knew what I was trying to say, and he explained it for me.
I don’t know what your definition of love is, but on a cold, wet day while sitting in, yet another doctors office with Ryan by my side – I can tell you my definition of love changed. Even after ten years of marriage, I am still trying to define love and figure out what that means in marriage. I still struggle with how to communicate effectively and more lovingly. I still fight my selfish tendencies. Everyday I make a choice to love and to let myself be loved, and sometimes I don’t do that well at all. I know I am an unbelievably strong-willed, stubborn person, and I’m sure it can’t always be easy to love me. When we were dating, Ryan used to call me his “little enigma, wrapped in an enigma.” I realize this is not your typical lovey-dovey nick-name, but it is very true. I can be confusing, moody, and terribly independent. This disease hasn’t made that any better. It’s no surprise that marriage doesn’t get easier with time, and in difficult seasons of life, it is significantly harder. Married life can become routine, even taken for granted.
But, on that January afternoon when I reached for my husband and his hand was there, his presence was stronger than it had ever been. He was there for me, he was cheering me on, he had been through these grueling years of pain and fatigue with me. He, too, has mourned the loss of life I have felt, he has been frustrated along side me, and joyful during the good days.
That is love, isn’t it?
The love letters and romantic gestures are great, but I have learned that presence speaks much louder than roses or exotic vacations, fancy dinners or expensive gifts. Last night he told me I needed to start trying to get to bed earlier to help with my treatment, but I told him that would only give us an hour together after the girls go to bed and that, for sure would be a detriment to my recovery process. Our time together is worth more to me than an extra hour of sleep. Even if that means watching Sherlock or HGTV side by side, yelling at the refs during a Mavs game, or sitting in silence… it’s time well spent. It is needed and necessary, and I think I had forgotten just how necessary.
The second “revelation” came when Ryan couldn’t get over the flu he had been battling for over a week. I was telling a friend that I had never seen him this sick. I began adding up the years so I could say that I hadn’t seen him this sick in ____ years. It was almost 18 years to be exact. Eighteen. I counted the years again…and one more time. (Numbers are not my strong-suit, so I thought I had made a mistake.) I have known Ryan since 1995. We were friends in high school, lost contact for several years and “re-met” thanks to Classmates.com. We began dating in 2002 and got married in 2003. That’s a lot of time to know someone. The startling thought hit me… I have known Ryan longer than I have not known him. Boom. Mind. Blown. I had never thought of our relationship in those terms before, and it kind of changed the way I saw our life together. I think it’s good to step outside of ourselves now and then and see the bigger picture. It’s easy for me to get caught up in the day-to-day, the busyness, our girls, the responsibilities of living and forget to notice each other.
I guess, all I’m really trying to say here is that I think I have a new definition of love. “Love is… giving your wife an injection – when it’s the last thing you want to do.” Ryan conquered – or more accurately – controlled his fear of needles because I was unable to conquer my fear of self-inflicted pain. He did it like a champ and is willing to do it a few times a week for as long as I need it… for me. Love.
On April 12, Ryan and I will celebrate 10 years of marriage, 11 years of being together and approximately 6,445 days of knowing each other. I’m thankful to call this man my husband, my best friend, my second brain, my care taker, my pill bottle opener, my weekly Tom Ka soup deliverer, laundry folder, OCD dishwasher, in-house IT genius, fun daddy extraordinaire, the voice of reason in a house full of drama, Thai food sharer, fellow obsessed Dallas Mavericks fan, expert trivia knowledge brainiac, and my ever-present shoulder to lean on, cry to, and laugh with.
So, what do you get when you add 18 years with someone who knows your regular temperature, as well as your resting blood pressure? You get a husband – a best friend – who is there for you through everything.
Happy 10th Valentines Day together ~ Happy Birthday ~ Happy 18 years of knowing my best friend!!
My Lyme symptoms and the side effects from starting my new treatment are kicking my butt this week but I’m thankful I have these medications. I know they are doing their job but I yearn to be on the other side of this. I see the bottles sitting on my kitchen counter, my nightstand and on my bathroom sink and I know it’s nothing short of a miracle that they are there, but sometimes it sucks that the meds have to be there in the first place. It feels like a full-time job just to fight the discouragement and depression that comes on so strongly with chronic pain and disease.
It hurts. It’s hard. It’s lonely. But I’m praying. I’m waiting. I’m sitting in expectancy… because I have hope. Hope is a big word that we can cling to when we have nothing left. It’s full and deep, whole and healing. Hope shouts over the negative whispers with life affirming bursts of joy. Hope covers the dark places with light that restores our peace and replaces the fear. Even when my faith wavers and I forget – hope lingers. Even when I lose the strength to try, the Lord gently reminds me He is there as he opens my heart to His hope. No matter how many times I call on Him, no matter how many days I get discouraged and question his ways…or doubt his sovereignty, He is there and I am covered in His love.
I heard this song recently and I wanted to share it. It struck quite a chord with me but I think anyone can relate to the lyrics. We have all been there…whether “there” is chronic illness, past wounds, death of a loved one, a deep regret, a colossal mistake, a tragic season of life… or simply being human in this fallen world – I think this song can apply to all of us. We all get tired of holding on. Sometimes it can be easy to get stuck between not being able to let go but not being willing to move on. How many times have we cried out to him for relief? For answers? For help? How long must we do that? We want to see what God is up to… yesterday! We want to know why He’s not taking the pain away or providing the miracle that we are so desperately crying out for. This world loves quick fixes and instant remedies. We want our wounds healed – STAT. Sometimes, the answers may not come the way we want them to or as quickly – maybe never, but He gives us the strength to keep breathing through it all. He walks beside us – giving us a way to make it through one more day, one more doctor visit, one more hard conversation, one more grieving process, one more goodbye – because that is where the hope lies. We must take one more step and turn over one more stone. Maybe we won’t know this side of heaven why things happen the way they do, but it will develop our character, change our focus and bring us closer to our Father. And that… well, that is worth it.
“Well, everybody’s got a story to tell. And everybody’s got a wound to be healed. I want to believe there’s beauty here. ‘Cause oh, I get so tired of holding on. I can’t let go, I can’t move on. I want to believe there’s meaning here. How many times have you heard me cry out, “God please take this?” How many times have you given me strength to just keep breathing? Oh, I need you. God, I need you now.” -Plumb
What is your story? Are you crying out to Him? He is there for you. He is there… in the mess and in the hope.