A friend recently introduced me to the Timehop app (thanks Jes!) - and now it seems as though everyone is in the know. But just in case you aren’t aware - this app takes pictures from your social media/phone and shows you pictures and posts to remind you of what happened, “1 YEAR AGO” today (or 2 or 3 years ago today). I didn’t really need Timehop to remind me of today’s anniversary though - 1 year ago, on April 10th, 2014, I was officially diagnosed with Lyme disease. I remember very distinctly – my husband and I were sitting on the couch watching TV, like we do best. I saw that I had an email from my doctor:
Brianna,
I am sorry to hear of your pain. I have attached your Lyme test. It is very positive. I have 1 30 min spot open tomorrow. I want to have a visit with you to figure out what to do with your pain and design a lyme treatment. They are related.
Marty
I was so excited! Finally FINALLY an answer – after all these years of searching, all these years of tests and procedures, doctor visits and money spent. I remember it being the night before my first Big Home and Garden Show at work – I couldn’t wait to get to the event site that next day and share with my coworkers my test results. I was doing a happy dance for having a disease – how crazy is that?! But the way things had been going, I figured I would live my whole life not knowing what was wrong with me. I’ve never known such relief and elation until that day.
Fast forward to now. We are a week away from this year’s Home & Garden Show, and I don’t know how I’m going to do it. When I had heard and read about the long road to remission, I never knew it was going to be this hard. I mean, I thought those first years were tough – but that was NOTHING compared to what I’ve been through since my diagnosis.
Just some of the space I have to walk through all day at the Home Show – a 4 day process and months and months of planning!
Every day is a such a struggle – I didn’t think it was possible for one person to endure such a gamut of symptoms at one time. And the pain is so, so much worse - I believe the stress has something to do with this – but all of a sudden this week, my pain meds that have been working for a year STOPPED WORKING. Such perfect timing, right? Nothing that helped before to relieve the pain is alleviating it, and I’m quite honestly freaking out. Because if this is how I feel on an average day, which consists mostly of sitting in my office and then on my couch, how am I going to get through an even more physically demanding week? Physically demanding used to mean doing things like lifting heavy items. But now, my physical challenges are the every day motions – standing, sitting, walking, bending over – making dinner, grocery shopping, driving to work. At last year’s event I put in about 38 hours of work at the Home Show between Thursday and Sunday. Almost all of it was standing or walking. This year, I’m praying for a miracle.
My doctor recently told me that she doesn’t know anyone who pushes themselves so hard. “Is that a compliment, or what…..??” Actually, it was her way of telling me to take it easy. She blatantly exclaimed that she was afraid I was either going to reach the point that I would literally drop to the ground, or a moment when I realize that I just can’t do it anymore. That scares me! But what else can I do? I don’t have the capability to stop working – we couldn’t afford it, especially with all the doctor bills still coming in – and I told her as much. She is strongly encouraging me to take at least 2 weeks off for regular IV treatments and to give my body a rest. There goes my ”vacation” time. And who knows how much that’s going to cost, since I know it’s not covered by insurance.
Last month I was working on a DIY project at home, and spent a little time kneeling on the floor – maybe 20 or 30 minutes? The pain when I stood up was nearly unbearable. And for the next 24 hours, my legs remained extremely weak, numb and very shaky. The rest of the week, I felt like I had done a major leg workout at the gym (Lord knows I haven’t been able to do that in years!) only it was a little different. Kind of like my nerves were extremely sore. Is that even possible? I had also baked cookies for my co-workers one night. By the middle of the process, I wished I hadn’t started, nearly in tears from the pain. And now it’s been months that my hands and feet have been completely numb, all the time, no matter what I do. This stuff has me, “unnerved”. Get it? “ba-dum-bum CHING!” But seriously, how, oh how, am I going to get through my events when it’s this difficult just doing little projects at home?
My new bookshelves. Painful but worth it?!
I’m hoping that a year from now, I’ll be able to Timehop my way back to this point in my existence and say, “that was the worst year of my life, but I’m so glad it’s over and I’m stronger for it!” Some people have tried encouraging me by saying that one day I’ll look back at my past and barely remember what the pain and suffering was like. I don’t know if that’s true, but I do still have an inkling of hope that I will get better. Actually, I believe I have to. Because there is no way I can live the rest of my life like this. I’m not usually one for wishing my moments away, but could someone could please invent an app where I could Timehop forward to that day?
