Sunday, 10 December 2017

The sweetest word: Hope

This post is dedicated to Michelle D. Thank you for giving us hope. 



I click on the website and start reading. At this point, I have done this dozens of times, and I would be lying if I said I have much hope that this will be a solid lead. Probably just another dead end.
I skim the list of symptoms: bone pain, joint pain and swelling, tennis elbow, stiff neck, muscle pain. My eyes widen, and I start to read more slowly. All of these apply!
The list continues: night sweats, unexplained chills, chronic fatigue, shortness of breath.
Then there are mood swings, unusual depression, insomnia, sleep apnea, memory loss.
And the clinchers: "pain migrates to different body parts", "continual infections (i.e. sinus)", "increased effect from alcohol and possible worse hangover". Check, check and CHECK!

My heart is beating fast now. This is it! This must be it! Rich has every single one of these symptoms!
The disease?

Lyme Disease. 

Lyme disease is an inflammatory disorder that is spread to humans through tick bites. Ticks pick up the bacteria through infected animals like deer, mice, or birds, and pass it on to whoever is unfortunate enough to be bitten next.
Lyme disease is sneaky.
It is dubbed "the mystery disease" by some due to the difficulty to diagnose it. There are more than 100 symptoms associated with Lyme disease, which may or may not show up immediately. In many cases, patients won't have any symptoms for months or even years. If you are bitten by a nymph tick you may never know it; they are the size of this period →.

Some people get the telltale bulls-eye rash, but many people don't. Blood tests often come back with false negatives, particularly in the early stages of the disease. The test is looking for antibodies in the blood, and they need time to develop.
To make matters even worse, there is no universally accepted test for Lyme disease; apparently, Lyme tests in Canada are largely flawed (source).

How did we come up with Lyme disease  as a possible diagnosis for Rich's mystery illness?
One of my readers told me! Michelle D. mentioned it in a comment on a recent blog post, and for that I am extremely grateful. She herself wasn't correctly diagnosed for over a year, despite seeing numerous doctors and specialists.

After she told me I immediately booked an appointment with our doctor, who listened and agreed with us. We have now done the blood test and await the results, which will take another week or two. Despite not knowing if that's Richard's diagnosis, we feel hopeful for the first time in months, and that is a precious, precious gift. Chronic pain is horrific, but not knowing what causes it is almost too much to bear.

I will keep you updated with developments, but in the meantime, here are some of the websites I have found useful in regards to information about Lyme disease:
Canadian Lyme Disease Foundation
Centers for Disease Control and Prevention
Knowing that you are not alone is also a huge relief. Here are some lists of celebs who have Lyme disease:
19 celebrities who have struggled with Lyme Disease
Famous people living with Lyme Disease

Michelle, thank you again from the bottom of my heart for reaching out! It means more than you'll ever know. ❤

xoxo Miriam

Share:

10 comments

  1. I’m so glad you have a lead on what could be causing these ongoing issues. You are both so ready to start doing what you have to do to solve the problem, if you could ever find out what the problem is. Fingers crossed you get answers and that Rich is on the road to recovery very soon.

    ReplyDelete
    Replies
    1. Finding an answer, even if it isn't a great one, is so much better than not knowing. The not knowing is the worst. The blood test is notoriously unreliable, but we're hoping we will catch a break.
      Thanks Amy!! 💖

      Delete
  2. Goodness, I surely hope this is going to lead you all to finding some relief for Rich's pains! I know living with Lyme's disease won't be easy, but having an answer to your questions and knowing how to work toward treatment will be wonderful. I hope you guys will know for sure soon!

    ReplyDelete
    Replies
    1. Thank you Emily!❤ The results of the blood test should be back before Christmas, we hope to know more then.
      The more we learn about Lyme Disease, the more we think that's what it is. It all makes sense, and for over 3 months, nothing made sense at all. We feel hopeful!

      Delete
  3. Oh Miriam - and to think I almost didn't comment on that post! I came across you via your reply to someones Instagram post that we both follow...your reply somehow intrigued me and I came across your blog post about your husband. I almost felt that I was being intrusive by commenting, that and the fact that when you are sick "everyone" has an answer to what it is and it can be tiring. But I clicked "Publish" anyways because it seemed all too familiar. I am so glad I did!! :) I know how it can be a relief in a way to look at that list of symptoms and check how many apply to you, that maybe this is it and it's starting to make some sense. Because those months in pain, in the dark, afraid of what it might be but not knowing...the not knowing is the worst. I had some pretty dark months for sure. I am so thankful for my osteopath who always said if nothing else comes up with your other doctors, lets consider lyme...she was my ray of Hope and I am so thankful for her. I am so glad your doctor agreed to do the tests. Don't be discourage if they come back negative. Lyme Literate docotors will know the symptoms and patients history speak louder than the tests. Mine came back indeterminate, but we decided to treat it as Lyme and I am so glad we did! Don't give up and follow your instincts even if you hit roadblocks in the medical community. These best help that I have found is in the Holistic/Naturopatic doctors. There's no quick cure, but there are a lot of different protocols out there to try. Since our bodies are different, so will be what heals us. I am so very happy that you and your husband now have some hope! It adds some color and lightness back to our lives. Your post made me cry when I read it...giving you both some hope is the best Christmas present that I could receive. I look forward to hearing how things go. All my best to you both! :)

    ReplyDelete
    Replies
    1. Dear Michelle, oh how glad we both are that you DID hit that "Publish" button. Without you, who knows how long it would have been before Lyme disease would have ever occurred to us.
      You already know how it feels to be so lost, scared, and fighting to not give up hope - I hope you know how deeply grateful we both are to you for giving us a possible answer. The more we learn, the more we are convinced that this is what Richard has - like I said before, it's the only disease that makes sense after months of considering illnesses (gout, connective tissue disease, RA, lupus, fibromyalgia, RA again) that didn't.
      Thank you, thank you, THANK YOU!!!

      Delete
  4. I know 3 other people who have been diagnosed with Lyme since September- two of them severe cases. Push for the test if you need to. I pray that Richard gets his answers soon.

    ReplyDelete
    Replies
    1. No way, you do?! Until now, Lyme has never touched us - we don't know anyone who has it, or have heard much about it. I'm doing lots of research to find out as much as I can, and it sounds like a misunderstood disease that's not even recognized by some doctors. Fortunately, our doctor is open and knowledgeable and listens - we feel that we are in good hands. I will post updates regularly on the blog.

      Delete
  5. I'm glad your doctor is open minded. I've heard of Lyme. I came across it somehow years ago because someone I followed online had it and I researched it a lot because it seemed like such a mystery because of the various symptoms. I found it so scary that a disease like this could be started by a tick, making so many people vulnerable to getting it. I hope you get the answers you need and can start working out a good treatment plan for recovery.

    ReplyDelete
    Replies
    1. What's really strange about Lyme is that it has never been considered by either the doctor, the specialist, or even friends we have shared his condition with. But since we've discovered this disease and started sharing it, a surprising amount of people keeps coming forward with similar stories. How can so many people suffer from it, yet it's still such a mystery? It's crazy!

      Delete

© Farm Girl | All rights reserved.
Blog Layout Created by pipdig