My neurological problems that come along with Lyme and the co-infections I have (Bartonella and Babesiosis) cause an overwhelming amount of anxiety. I can't control my emotions or the directions my thoughts go in, not to mention that my brain feels like it is going 90 miles an hour at all times. This makes things very difficult when trying to prepare for any type of change. Especially when that change is getting another PICC line put in and starting IV treatments again. My doctor sent in the order for my PICC line last week and the date for the procedure is tomorrow (well technically today as it is past midnight as I write this) at 1:30.
However, the orders for the home infusion company have not been sent in yet. This is important because the day after the PICC line is put in a nurse has to come here and do a proper dressing change for the line. Not to mention that I have to have supplies delivered like the kit for the dressing change, the IV bags, the lines to connect my bag to the PICC line, saline flushes to keep the line open, gloves, alcohol wipes, etc. I have to have everything that a hospital or doctors office would have to do this at home. So, I have to call my doc's office as soon as they open to make sure all of this gets set up. Otherwise, I end up having to reschedule the procedure for a later date and I am ready to get started now!
The night before I scheduled the appointment, I didn't get to sleep until after 5:00 a.m. despite the many medications I take to help me sleep. That's what anxiety does...it keeps you guessing, keeps your mind rolling, and ends up leaving you zapped. Of course, the overall body pain I experience keeps me awake as well, but I know if I could control my emotions more that sleep would come easier. So, I'm not in the best mindset right now.
I feel so frustrated about having to go through all of this again. I feel like the past 9 years have been stolen from me, because I had to quit work at 30 and I'll be 39 this spring. This was when I had been planning on having kids and being a stay at home mom. My college degree is in Human Development and Family Studies with a focus on both early childhood development and marriage and family therapy. Basically, I majored in how to be the best wife and mother I could possibly be. It's what I always wanted to be and a dream that has so far been unfulfilled. That is hard and heartbreaking.
Today I was trying to clear out my bedroom to make room for the mini-fridge that has to be put back in to keep the bags of antibiotics chilled. So, I took a lot of stuff down to my storage closet downstairs. I had to reorganize some things and I ran across all these children's books I have kept/collected over the years. I started buying children's books that I loved back in high school. I added to the collection when I taught preschool and saw which books the kids really responded to. I kept college textbooks about all things kid related...titles like "Painting and Arts for Children", "How Play is Important in Childhood Development", "Discipline Techniques for Young Children"...the list goes on. I don't know what God's plan is for me in that area. I know He could bless me with a child, or push me in the direction of adoption. Yet, being human, I can only see the realities of the difficulty of having a child at an older age, having only one ovary due to losing one from these diseases, and the scariest being passing these diseases to my child during pregnancy. Lyme can also cause women to miscarry and I think of how hard that would be on me emotionally. However, when I look on what I've been through, I end up thanking God for not giving us children before all of this happened. Why? Because if I can't even take care of myself how on earth would I handle a child? With my sound sensitivity how could I deal with the noise that comes from a child playing, crying, or throwing a tantrum? The answer is I couldn't and I would beat myself up endlessly if I couldn't be the mother I always wanted to be. So, I try very hard to see my childless lifestyle as a blessing for right now. But, as I said, my brain is not working normally so it makes it very difficult to control my emotions about these things and I often cry over what I see as unfair. Anxiety makes me focus on what I feel I've lost instead of what I have.
Right now I feel the need to count my blessings. The biggest being how I have grown in my faith, even when I question things I remember God is in control. Another HUGE blessing is my wonderful husband who is my best friend, my biggest advocate, my confidant, my caregiver. The immense love he shows me daily by bringing my food to bed without even thinking of it as a chore is just one example. He listens to my ramblings, my questioning, my worries and he gives me such wonderful advice on how to cope with it all. Honestly, his love truly humbles me as he never complains about anything and assures me that we were meant to take this journey together. His view is that God knew this would happen to me changing his own life as well and that he sees the positives in how it has worked in our life together and even worked to make our marriage stronger. I named this blog, "Our Life In My Words" for the specific reason that it is OUR story, I'm just the one writing it. I am blessed with an amazing family who make sacrifices for me all the time. My mom is definitely my second biggest caregiver as she comes here at least three times a week to help with laundry, grocery shopping, and cooking meals. She selflessly gives and shows her love in countless ways. My dad would truly do anything to make me well! He wants to know every detail of how I feel, what the doc says, what we are trying next to hit this, and he gives up time with my mom so she can be here for us. I have support, love, and continual prayers from my in-laws who often deliver meals and try to find any way they can to help us. My sister, brother-law, nieces and nephews love me and pray for me even though I rarely get to see them. My husband's brother, my sister-in-law, and their two wonderful girls live in another state but they pray for us constantly. I count these as huge blessings because I know many devastating stories of Lyme patients whose families don't believe in their illness, some whose spouses often leave because the pressure is too much for them. Sometimes worse are the patients who can't even get treatment because of the lack of Lyme doctors and the fact that most aren't able to accept insurance because insurance companies don't believe in treatment for chronic Lyme. They seemingly ignore the abundance of studies showing long term treatment is key in getting people their health back. Many patients have lost all they have to pay for treatment and others have to quit before they're well because they have no money left to continue.
After typing all of that out I now see that I am truly showered in all the blessings that count. Those blessings outnumber the things I just wrote about being stolen by this disease. I may not have children right now, but I have no idea what the future holds for us and I cannot dwell on what I don't have if I focus on all the amazing things I do have. Honestly, this is why I write this blog. I do hope it reaches others, helps them deal with their own difficulties, but God reaches me through my writing to change my heart and my mood. Many people praise me for going through all of this with such strength, but that makes me very uncomfortable because I am weak and human and prone to selfishness. What may come across as my strength is really only the strength that God gives me. I write what is going on, I often whine, and yet He comes along and turns me around to show me His glory in my story. How can I not be in awe of that? If you truly knew the mood I was in when I started typing and the peace I now have in my heart, well, you would see God at work. There are so many people going through things much harder than this. How can I complain when I ask for peace and strength and God graciously gives it to my whiny, frustrated, anxiety filled heart. I do nothing to earn that. He gives it freely and I cannot adequately express my extreme gratitude for it.
I'm sorry that these entries are sometimes so very long. I wish I was the type of writer/blogger who could be more concise and to the point, but I'm not. As I said, this is written for me as God seems to teach me many things through my rambling writing style. I can't change the length of these entries, because sometimes it takes that long for God to grab my heart and change it from doom and gloom to hopeful and thankful. I appreciate all of you who take time out of your day to read this. I hope something I share helps you in your life, that God uses me reach others and show them how powerfully He works in my life. I pray today goes smoothly and everything falls into place, but if it doesn't I refuse to get upset over circumstances beyond my control. I choose instead to believe God's plan for me and my life is better than the one I had mapped out in my own head. I choose to trust Him because that is where my strength, peace, and much needed patience comes from. I shudder at the thought of going through this without His guidance. I pray He touches your life and you feel His guidance as well. Sometimes the best thing for anxiety that abounds is to realize you aren't in control of everything. You can only do your best, but without Him I know my best falls so short.
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2 comments:
Love you Karen. So sorry you are still fighting this. God is using you to show His Glory. We missed you at the family reunion, but I believe there will be many more that you will attend when you are healed.
You're my hero, Karen. You show me what selflessness looks like. Praying for you.
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