Saturday, 20 January 2018

One month post diagnosis


Hi friends! I thought it's about time to update you on Rich's Lyme Disease status. 
Last time I talked about it on the blog, we had just received the diagnosis, and we were relieved beyond words. After months and months of being in the dark, of worsening pain for Rich and constant worry for me, we finally had an answer. 
At that moment, we cared little what that answer was, and more about finally being able to put a name to his mystery illness. 

As soon as we had the positive results back, Rich started on his antibiotics treatment. Now we are 4 weeks in, and here is where we're at:
The good news is, he is feeling a lot better! His mind fog is gone, short-term memory is vastly improved (in fact, it's better than it has been in years; we suspect that the dormant Lyme bacteria in his body were sneakily affecting his brain for years, if not decades), and his energy level is steadily rising. 
The not-so good news is that he is still in quite a lot of pain. The pain has migrated from his lower body into his upper body, particularly his shoulders. It's been lodged in there for a good 4 weeks now, and it's not going anywhere. Sometimes it travels down his arms into his hands, or it likes to hang out below his collar bone in his pec muscle. Apart from the suckiness of chronic pain, it's also seriously messing with his ability to sleep. 
In short: pain and insomnia are our current main problems. 


He's been taking Tylenol and Voltaren for the pain, but aside from the serious possible side effects (stomach bleeding, high blood pressure, heart attack, stroke, liver and/or kidney problems), it's not helping with the insomnia and only moderately for the pain. 

Our current mission is to find better alternatives for pain control. I have several friends with chronic illnesses, and their expertise has been invaluable!
Thanks to their advice we have started experimenting with cannabis products. Our doctor fully supports this decision, and after successfully using a muscle rub (externally), we are now in the process of trying out teas, gummies, and oils. We are just getting started, so it's too soon to let you know if it helps, but I will keep you updated!

We also picked up a second month's worth of antibiotics, closely monitored by our doctor, and there are two specialists not too far away from us, whom we may visit in the spring for more info about long-term care. 

Overall, we are feeling very hopeful. 
There are still bad days, and Rich's supply of spoons is limited; he had to cancel plans with friends several times because he had no spoons left. 

But the good days outweigh the bad, and we consider ourselves lucky for not having to face a more severe/life-threatening disease.  

Thank you all for your many emails, messages, and continued love and support! You are part of the healing process, and we both appreciate it very much. 

Have a happy weekend!

xoxo Miriam



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8 comments

  1. I know many people who have been positively impacted by using cannabis products for their chronic pain and ailments. I hope it works for Rich!

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    1. So do I! The mornings are still rough around here, because his sleep is so poor and his shoulders hurt so much in the am. We're expecting the delivery tomorrow or Tuesday, we can't wait to try it out! We have high hopes!

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  2. Your ability to keep your spirits high and stay positive is inspirational, Miriam! Props to you for focusing on what is going right and remaining unflappable. xo

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    1. Aw thanks Casey! I definitely have moments where I want to crumple in the corner and cry (and sometimes I do), but overall we're both managing to stay positive. We try to laugh and joke every day, because laughing is the best medicine! ;-)

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  3. I hope you guys find something that helps with the pain soon. I’m so glad that he has seen some improvements too though. I don’t know if this would be effective at all but have you asked about acupuncture?

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    1. Rich did acupuncture in the past, and he's a big fan. However, with his current far-reaching pain, he doesn't think it would help; I want to convince him to do it anyways. It's on our list of things to try, hopefully in a little while!

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  4. I'm so happy to hear that Rich is doing better. I wish that his pain level was more tolerable for him, but glad to know that it's improving and you're finding new ways to help with its management. Here's to his (and yours!- watching a loved one with a serious/life altering disease is hard!) happiness and recovery!

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    1. Dear Katie, thank you! It's been a rough road for sure.
      But he's getting better all the time!
      The cannabis oil is helping him sleep, which is a huge improvement. We're getting there! 😁❤

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