Friday was a toughie. I woke up in the morning feeling as though I was going to pass out, weak, exhausted, like I had never slept to begin with. I’ve felt this way all day long for 3/4 of the last month and it’s nothing new to me; we just don’t yet know WHY I feel this way so often. I had a long list of things that I needed to get done during business hours before the holiday weekend made it impossible for me to reach doctors’ offices. But first I had to get myself moving.
Whoa, come on girl…you’re not allowed to fall over; pull it together. I wobbled precariously as I walked with my walker from my living room to my kitchen to check my blood sugar. 84. Not bad, but I sure don’t feel so hot. I checked my blood pressure; slightly low, which is usual for me. I stared at the contents of the fridge. Hmm…nothing breakfast-like here. Give us this day our daily “bread”…. So I made a quick breakfast with bananas and eggs in the frypan, my favorite breakfast food. I sat down to eat it and put my head on the table. I’m too exhausted to eat now. God, will you help me? I need help to eat. So many people say the opposite prayer each day, asking God to help them NOT eat. I was too tired to note the irony. Man shall not live by bread alone, but by every word that comes from the mouth of God.
As I finished eating, I heard the lawn maintenance men start cutting grass. I wheeled my wheelchair outside to ask the guy weedwacking if he would clear the weeds out of my “garden” because I am too sick this year to grow my garden as I have in the past.
He was walking by JR’s apartment and before he saw or heard me, he started weedwacking a plant that JR and his wife Judy had planted years ago. I watched in horror as he hacked it up, unable at first to yell “STOP!” because I didn’t think he would hack the whole thing down…but he did. After this I called out but he didn’t hear me. There was one other plant on the side of that apartment which JR and Judy had planted, and he was going near to it with his weedwacker. I yelled at the top of my lungs “STOP!!!! Don’t touch that plant!!!!!” I nearly had tears in my eyes. He heard me this time as I yelled and he turned around, baffled. I guess it’s not every day he gets yelled at bloody-murder style by some wheelchair chick.
I told him those were JR’s plants, and JR had died but that was one of the few things I had left as a reminder of him, so PLEASE DON’T CHOP DOWN THE PLANTS!!! He said he was only going to take out the smaller one. I don’t know why he had to take that one out to begin with. Good sense makes one slow to anger, and it is his glory to overlook an offense. I asked him to take care of my weeds, then, too exhausted to breathe well, I went back inside my apartment and cried both because watching the plant get hacked was emotional and because I was frustrated by having such a strong reaction ABOUT A PLANT.
I felt like I’d hit my limit for what I could handle in a day…. *tears*. It was only 9:50am. Oh God! I can’t do this!!! I’m emotionally, physically, and mentally spent. I just can’t fight one more thing today. I don’t know how I’m going to get this to-do list done and I NEED YOUR HELP!! The tears kept flowing; a floodgate had been opened and bottled up emotions and pain spilled out as I cried out to God.
Then I phoned a friend and spilled my guts out to her. I cried as I told her how badly I missed JR, then I shared some of my memories of times he and I had shared and some of his jokes. There’s still a gaping hole in my life since he died; I loved him…in a way, I guess I still do love him. And this commandment we have from him: whoever loves God must also love his brother. I cried about a bunch of different issues and drenched my compassionate friend in my woes. I needed a Jesus with skin that day, a friend to help me bear the load. Bear one another’s burdens, and so fulfill the law of Christ. I told her how afraid I was of the hallucinations/night terrors, how I wasn’t sleeping at night and even when I was, it wasn’t restful and I often felt like I was going to pass out. And about how I was afraid of living with terrifying hallucinations night and day like I did for several years and that I didn’t want to go back to that again. The sun shall not strike you by day, nor the moon by night. I told her how scared I was of people or things touching me and how scared I am of gluten when I’m outside my house, and how avoiding all these things makes leaving my house feel like a monumental task each day. My grace is sufficient for you, for my power is made perfect in weakness. I was becoming an anxious mess all over again when I’d finally made so much progress in dealing with anxiety as my gut became more manageable. I’m not sure if I’m more anxious because of the Lyrica and its side effects or if it’s because of all the things I’m trying to balance. Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus. I shared my deep burden for my neighbors and those who don’t know the Lord, how I wanted to share the Gospel and I was brokenhearted over those who have heard with their ears but not with their hearts. I told her I wanted to focus on other people more, as opposed to being trapped in my own little world of thinking about myself with every moment of every day being focused on avoiding pain or sickness – it’s worn me out. Do not neglect to do good and to share what you have, for such sacrifices are pleasing to God. Just because my CRPS/RSD has become so much worse doesn’t mean my other diseases which require strict self-control have magically disappeared. No…they are still there and I still have to manage them just as diligently as ever, but now I have the huge added stress of managing CRPS/RSD. If nothing else, the pain itself wears me out. I still have to trust that His grace is sufficient. There are many decisions I have to make in the next few months and years, and advocating for myself, spending hours each week making phone calls and managing my medical paperwork, required wisdom and strength I did not yet possess.
As I cried into the phone, my friend Julie cried as well. She was there for me, carrying some of the weight. And you know what? That’s exactly what I needed. I didn’t need someone with all the answers – nobody but God has the answers anyways. I didn’t need someone who could quote every Bible verse listed under “help in troubles…” in “The Bible Promise Book New International Version” (though I do appreciate such resources at appropriate times). I just needed a human who could weep with me, and Julie did that quite well – she was probably just as snotty and tear-stained as I was, but I could feel the genuineness of her heart. If she had shed no tears, I still would have felt her care. She did give me some useful Scriptures, and she did so without that “you just need to be more faithful in trusting God” attitude. Anxiety in a man’s heart weighs him down, but a good word makes him glad. She encouraged me by giving me a few examples of how God was using my life and testimony and how it positively impacted her and others. I felt better, as though some of the weight truly had been lifted off my shoulders when we were done talking. Poor Julie now had more weight on her own shoulders, but she told me she didn’t mind, and I appreciated her kindness and willingness to listen with her heart and not solely her head/intellect.
I wasn’t done crying. I cried for another two hours on and off, but I felt better after crying and letting some things out. Mike stopped by and wanted to chat and check in on me. “You look like you’ve been crying” he said. “I have been, a lot,” I answered. “Don’t cry, don’t be sad Sarah,” he said. I asked him for a hug. “I need to cry, and I AM sad,” I said quietly. “But…why? I don’t like to see you sad,” he stammered, trying to find some way to comfort me. “Oh Mike…there are so many things, so many things on my mind and in my heart. I’m so tired. I know I’ll be okay because God has brought me through so much before, and He will again.” I told him about the plant and missing JR, but didn’t elaborate about anything else and didn’t really share details about JR either. “But you just have to get over it and move on; that’s in the past,” he said. Because I love Mike and know him, I didn’t take offense; he meant well. “It’s been one year since he passed, but I loved JR. He was a close friend and I miss him. Sometimes I still need to cry.” “Would you be upset if I died?” “Of course! And then I’d cry too.” “I hope you wouldn’t,” he said, “I don’t like it when you’re sad, and we’re all going to die some time. Me too.” I pressed my lips together, figuring there wasn’t much I could say to explain my thoughts. After a minute I said, “Mike, you’re right. JR’s death is in the past, and I AM moving on and I think I’ve done pretty well, all in all, with accepting this loss, and it has been a deep loss. But I AM sad still, AND that’s okay; I trust God.” For the last year that Mike’s known me, he’s typically seen me in my semi-bubbly (though tired) state, so I’m sure to see me sad is hard. “I never cry, in front of people at least,” he said. “It helps me to cry with a friend sometimes and to cry to God,” I said. “It makes me feel better afterwards. You should try it sometimes!” I smiled just a little. “Nah,” he said with a head shake. I gave a single chuckle, my little smile going a bit crooked.
There was another knock on the door. The mailman left me a package. “Ooo, it came!” I announced. Mike wanted to know what was inside so he helped me open the box. I wouldn’t tell him what was inside because I wanted to surprise him. I pulled it out and unwrapped my golden yellow kite with red kite tails. He said it was pretty and we read the directions and put it together. I needed to get some phone calls done and felt like if I didn’t get a nap, I seriously would collapse, so I told Mike we might fly it later in the afternoon if I felt up to it. “Are you sure you want to fly today?” he asked, “You look very weak in your eyes and you can barely walk.” “Yes, thanks for the reminder,” I joked, “I won’t have many days that are a good temperature outside for me to enjoy my kite, so I had better take any chance I can get.”
I began updating my medical ID and medications lists, then paying medical bills and filing them away. I listened to six messages from doctors and wrote down all the callback numbers. I got back on schedule with my home visit psychologist, then I got a sleep study and neurology work-up scheduled, set up an appointment with my second orthotist/prosthetist to problem solve my compression stocking issues and talk about sandals, left two messages for the UNC psychiatry resident program and took down notes, called two other doctors and responded to four medical-related emails.
I had a woman named Angel from Carolina Pain Institute, Dr. North’s office in Winston Salem, call me back. She told me that she’d probably call me by Wednesday afternoon to get me schedule to see Dr. North for a consultation to see whether or not I’d be a candidate for IV ketamine infusion. This practice is the only place in my state where one can get the ketamine infusions for CRPS/RSD. In the past, and I can’t remember all the details right now, but I was told that they didn’t accept my insurance. When I spoke with Angel, however, she told me they now do! This means that if I’m a good candidate for the treatment (and thus far Dr. Z thinks I am), it may be more within my budget and it could be a very real option! Lots of folks who’ve had these infusions have had tremendous success in pain relief and improved function. You do have to get booster infusions every few months, but that’s a small price to pay for real relief. The treatment doesn’t come without some risks, and given how sensitive I am to many medications including ketamine, I wouldn’t make this decision lightly. It’s just great to even have the option, however. An Angel had brought me a ray of sunshine. When we hung up, I cried AGAIN! I was both happy and overwhelmed by decisions to be made and work to be done (getting from my home to Winston Salem for an appointment is no easy task and requires planning for my dietary needs as well).
Getting these things done took over two hours and I was spent. I laid down and took a nap. I felt guilty for taking a nap when there were so many other things to do and I wasn’t going to get them done before business hours closed, but I just couldn’t do one more thing and my thinking and writing were so slow I was afraid to make any more phone calls because I may have sounded either drunk or I may not have remembered or been able to process any more phone conversations or information. So I tried to rest.
When I woke up, my phone rang and it was Mike. He wanted to know if I still wanted to fly the kite. “Yes, I do!” I said. It was now past business hours and I felt more free to step away from my work and try to enjoy something. I just needed a mental mini-vacation. He came over and took one look at me and said, “You don’t look good. Are you SURE you want to go out today?” “Yes,” I said; I’d already made up my mind. “I’m not sure it’s a good idea,” he said. After a few more affirmations that I wanted to go, I said, “If I wait for a day I feel good, I may never fly this kite! I’ve decided I want to go fly this kite and I’m going with or without you, but I’ve made up my mind. I’d love it if you came with me. Are you coming?” I saw a hesitant smile creep across his face. “YOU DON’T PLAY AROUND, BOY!” he exclaimed. “No, I don’t.”
I work hard and sometimes I just want to play hard too. We went to the park with my kite and a $3.50 penguin kite – I figured if it cost more than $1 and I didn’t buy it at the dollar store, there might have been some hope in actually flying the thing! It took a while for me to walk with my walker from the car to the area where we wanted to fly our kites, but I wanted to walk rather than roll. We did bring my wheelchair in case I became too weak to get back to the car and because it’s more comfortable than sitting on my walker when I need to rest.
It didn’t take long for us to get our kites up in the air this time; the wind was just right! Mike ran around with his kite a lot; I think he burned off a lot of calories. I just stayed put because I wanted to relax and, well, for mobility reasons as well given that walking on uneven terrain is extremely difficult. When he came closer so we could talk, we tried to keep our kites from experiencing a collision! 😀
I was enjoying the moment and grateful to break away from all the thoughts of the past week for an hour or so. Finally, I smiled and got the first picture of myself that day which I felt was post-worthy. My lovely sunglasses hid tired eyes. Mike said, “Isn’t it amazing how high they fly?” I agreed. It was amazing and made us both want to shimmy up the string to see what our kites were seeing. I suppose if I was to get really geeky I could someday find a way to attach a small “kite cam” so that we can actually see what our kites see! That would be cool, wouldn’t it?! Oh, I guess someone has already done that already.
When it was time to go home, we packed up the kites and I dropped Mike off at a meeting he needed to attend then headed off to the gym for a hearty workout, then to Walmart to pick up a few items. It was dark when I came home and I noticed it was a full moon. The moon seemed to direct me home; it was pretty and big. “Oh, that would make sense” I said with a crooked-lip expression. No wonder I’m feeling so emotionally all-over-the-map – its a full moon! Haha. In any case, I felt comforted by the moon’s presence and as soon as I got home I hit the sack, grateful to have found a few bright spots in a difficult day and to no longer have to fight passing out once already in bed. I didn’t lose consciousness before thanking God. Thanks, God, for bringing moments of sunshine into days of wind and rain. I’m grateful you hold me even when my emotions feel like they’re trying to blow me this way and that. Keep me tethered to Your line so that, like my kite, I know my life is all still in Your control because I know the one who is holding the string.