Friday, November 3, 2017

The Chapter I Would've Chosen to Skip

Looking back on 2017 I find that the month of October just doesn't fit. It's in it's own category. It doesn't fit into my life..and maybe that's the point.
I started PT this week and had to start from the beginning and tell the whole story. So I thought I'd document it before I forget the details, before I lose the story.
On October 3rd I had a pretty minor procedure done in outpatient surgery. The next day back home and rested I was feeling great. Friends visited and I was sure I would be recovered in no time. That afternoon I loaded my kids up in the car commenting on how wore out and achy I felt and thinking I've overdone it and probably should've taken a nap. By the time I got to town dropping one kid off and headed to my next location I began to feel like my skin was burning and I was struggling to drive. I got to our gym and lay down in the lounge. I was shaking and crying and curled up in a ball by this point. My husband came and said he was taking me home. He left his classes and took me back to bed. He checked my temperature and it was 104. He called my doctor's office and talked with them about all of this. They wanted me to come back and start iv antibiotics but was worried about me making the 2 hour drive. It was decided I was going to the ER instead. There they ran the usual tests and blood work, started an iv with fluids and Tylenol and decided I should start taking antibiotics. My white blood cell count was only slightly elevated so the antibiotic was said to be in case it was an infection. I got home and ate so that I would not be taking it on an empty stomach and went to bed. Within the hour I was violently ill. I could not keep anything down. My stomach hurt all night and my temperature peaked and broke over and over. It was a long miserable night and I got very little sleep.
 We had made an appointment with a local doctor for the next day so I stayed in bed until it was time to go. They ran more tests & sent me back to the hospital for more blood work. My temperature was running around 102 now with alternating Tylenol & Motrin. I had tried to eat but had no appetite. My blood pressure was low and my white blood cell count had lowered. This doctor gave me a rocephin shot and started me on a new antibiotic & something for nausea. As we were leaving they told us to watch my blood pressure getting any lower.
We got home and I took more meds & went back to bed. By this time everything hurt and I was very adamatly not getting out of bed again. I vaguely remember my husband & my mother-in-law checking my blood pressure and stressing over it. Apparently he drove back to town to buy another blood pressure cuff and back home to check it again. Having a bad feeling he kept checking it. When he loaded me back up in his truck I told him I've never been this sick my whole life. He got me to the ER where they said I was septic and admitted me into ICU because my blood pressure was dangerously low. I had actually pleaded with the doctor that I was able to keep this new antibiotic down so surely I could just go home and sleep. This doctor informed me that would not be happening.
 Things started moving quickly then. I was started on bags of fluids, iv antibiotics & pain meds. I just remember not being able to open up my eyes without pain and feeling so dizzy and disoriented. I remember being rolled around in the wheel chair and wanting to throw myself out of it. I couldn't answer the doctor's questions. I was despondent.
My parents had driven 2 hours to meet us at the hospital. My mom & husband spent the night in recliners in my room. It was now Oct. 6th. I was getting chest x-rays, an EKG, ultra sounds on the belly & chest, and more blood work done. Different doctors came in to discuss different scenarios and no one really seem to know what was wrong with me. Friends & family were coming to see me now and I was starting to feel a little better.
By Saturday I was puffy & swollen and could barely bend my fingers. I was sore from all the bedrest but my fever was staying down finally. I was so ready to get out of there. I tried my best to eat and walked some around the nurses station. I had some nerve issues but I figured that would fade once I got home. I wanted the iv out most of all. After I'd received my 9th bag of fluids along with some magnesium, potassium, morphine, and one last round of antibiotics the doctor visited with me about my desire to go home. She'd said I was to be resting at home, taking a new antibiotic she was prescribing me, getting tons of water and to come back if my fever returned. I was then set free and we felt like we'd made it to the end of this crazy ride and were so relieved. I laid in the sun in my backyard just thanking God for getting me through all of that because I sure hadn't done anything.
My mom had decided to stay a few days and do all those wonderful things that moms do. Family & friends had sent flowers, food, messages & prayers so I was feeling the love. I rested and let all the amazing people in my life take care of me, which is no easy task for me. Things were going good and then I discovered I was running a fever. We started watching it. When it hit 101.6 my mom called my husband at the gym and we met him in town at the ER. This being my 3rd ER visit and after all that had just happened I was not happy to be there. The ER doctor told us I'd probably just caught a cold and that I didn't need to come to the ER just because I had a fever. He said my hospital doctor who'd told us that was new and being overly cautious. He checked me for strep & the flu, drew blood and sent me home. This was my breaking point. I was mad. No, I was livid. I continued to run a low grade fever and we all stressed over what that could mean and my people prayed.
Then a miracle happened. I got an appointment with the right doctor. This doctor sent me back to the hospital for more blood work and blood cultures and tests and talked to the other doctors involved. He discovered the specific infection we 'd been battling against, likely introduced into my body from the surgery and it was in my blood. He told us the severity of my condition and that we weren't done yet. He explained the levels of things in my blood and that my low blood cell count was actually an indication that the infection was winning. My body could not fight it off and had given up. He ordered a week of iv antibiotics at the hospital twice a day as well as an oral antibiotic 4x a day. This all felt insane but we were just relieved to finally have some answers.
I went back to the hospital to get my first round of antibiotics in ICU which just happened to be my old room and scheduled to have a midline placed in my arm so that I wouldn't have to get a needle stick each time. (This sounded good to me because I'd definitely had my fill of being a pin cushion.) The next morning it was placed and I got through that reassuring myself it was my last experience of a needle digging around in my sore arms.  I had a tube taped to my arm which was as conspicuous as it was uncomfortable but it sure made the experience a little quicker to already have a port for them to hook into. Spending an hour in the mornings at the hospital and then again every evening plus the car rides back & forth to town was so exhausting for me. It seemed to be all I did each day besides take pills and force myself to eat between naps. I gave up completely and let everyone take care of me and all my daily tasks and take care of my kids and their activities and I just focused on being a good patient.
Then my mom drove me to the hospital one morning and a wasp stung me on the neck. Whoo that hurt. This was my breaking point. I was so ticked off I couldn't see straight. Like are you kidding me?! Being allergic to bee stings it also was a little scary. Luckily the hospital nurse called my doctor who ordered Benadryl right into my iv. With that, Motrin and an ice pack we had it under control.
My days continued in this way until the midline became so painful I wasn't able to sleep at night or move my arm around. I still had 4 rounds of antibiotics to go and I thought I could tough it out. But as the antibiotics were supposed to be going into my arm it burned so much worse than it had that morning and the nurse came back discovering it wasn't really going in well so she removed the 10" long tube from my vein. It was such a relief. I went home that night and finally got to take a shower. It was amazing.
The next morning with my husband and back at the hospital was not amazing. It was now Oct. 17th. My veins were toast. A nurse finished her third attempt to get an iv in and went to get another nurse to take her turn at digging around in my arm. Meanwhile labs had come up to take more blood & cultures. I was so beyond angry at what I was having to endure. I felt so weak and helpless. When the fifth try finally held I was in complete tears at the nurses apologizing. Trying to remember to breathe I had once again reached my breaking point. Then the vein blew. (This is two weeks later that I'm typing this and my arms are still bruised.) It was time for my doctor's appointment so I refused the suggestion of putting an iv in my chest and said they could try that later when I returned that night. Which I didn't.
My doctor took one look at my arms and said that was enough. The blood work looked good and the levels he was watching had declined to within normal range. It had worked. I was to continue on my oral antibiotics and return again the next week. I had a women's retreat scheduled that weekend and he gave consent for me to go. I couldn't believe it. I'd been scared to even hope I'd get to attend. I packed my bags and we left. Surrounded by loved ones I spent more time resting and found my spirit renewed by such an incredible weekend. God had held me through the hard stuff and now He was blessing me with more love, joy & peace than I felt I could hold. He is so good.
Returning home I was finding my joints bothering me more and more and my nerve issues were not going away. My doctor said my body had been on full defense mode and was attacking everything so I guess this isn't surprising. He ordered an MRI, more blood work & consultation with a neurologist. Back to the hospital registration process, back to labs, and another test.
The next week was more appointments and treatments and me attempting to enter back into my crazy life that I'd missed 3 weeks of. I was now driving kids to activities again and teaching a few of my yoga classes. (God bless my partner for handling it all on her own while I was out.) I was blown away at how weak I was. I was discouraged by how easily fatigued I'd become. I saw the doctor again and he tested my strength. That was embarrassing. I have lost weight. Not just the fluid weight I had gained in the hospital but weight from before I got sick. This is so disheartening to someone who fights like crazy to build muscle and was in the best shape of her life just a month ago. Doc is keeping an eye on me and ruling things out so I am grateful.
Now I'm working in PT to feel good about the 8 minutes I went on the bike improved from only 5 the session before. I'm attempting to stretch thru my tight stiff body and not think about how much flexibility I've lost from all this. I'm trying to accept myself the way I am now and not feel the loss of where I was. It doesn't even feel like my body. I'm trying to focus on strengthening little by little. Taking it one day at a time.
It's now November.  I smile when people ask if I'm feeling better because then I can say emphatically YES, SO MUCH BETTER! But once in awhile I get asked if I'm back to 100% and I hesitate. Deep down I wonder if 100% will ever come, or if I just have a new 100%. My doctor says it could take months before I'll feel back to normal and longer to feel as healthy as I was before this hit so I'm trying to be patient. I'm at the struggle of knowing how far to push myself and when I need to rest. I am so wiped out from this experience it's like my legs were kicked out from under me and I smacked hard on the concrete straight on my face. Picking myself back up and starting to stagger forward again has been the most humbling experience of my life. I've found myself incapable of 'toughing it out' or 'pushing through' or even multitasking. It has been a month of not handling things or being on top of my to-dos and just depending on others. My natural inclination is to jump out of bed each morning and hit the ground running because I have a lot of catching up to do. Each day I find that not happening. I have sure been shown how loved I am though. Loved by my people, and loved by my amazing Heavenly Father. I have felt surrounded in prayer and that is an amazing feeling.

If I were in charge of writing the book of my life this is likely a chapter I would've chosen to leave out. I don't like pain and it was hard. It didn't show me strong and competent and achieving things. But the truth is it's not my story. It's not about me. The story is about Jesus. This is what I claim and pray so this is me living it out. I know God has a purpose and a plan for everything and so I trust Him to make straight my path. I don't need to understand it. I just need to keep my eyes on Jesus. And so I follow, and turn the page..ready for the next chapter.

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