Friday, May 4, 2012

Happy Anniversary?

It has officially been one year since my Lyme diagnosis. It seems very surreal that a whole year has passed since hearing my doctor utter the words: "Oh, and you have Lyme." On one hand, I was relieved. My entire life I had struggled with one symptom after another, so that by the time I got to him, the list was so long I had to type it in a tiny font to fit it onto one page. The diagnosis meant: 1. I'm not crazy; 2. I'm not a hypochondriac; and 3. There is a name for what I've lived with for at least 27 years. Unfortunately, though, my diagnosis also meant something else: my two children were most definitely inflicted with this disease as well (or at least face serious health problems as a result of my illness.) There is no cure. There is only a hope for remission. I was devastated for my children.

For the past year, I have been laughed at by people in the medical community. I have been told I am just depressed and there is no way I could possibly have Lyme disease. "I would KNOW if you have Lyme Disease," my former primary doc scoffed. "Do you want me to write you a prescription for anti-depressants?" "Um. No, thanks. I have a CDC-positive test AND just about every symptom of Lyme. I'm pretty clear on my diagnosis." I haven't been back since. I guess it isn't his fault. Much of the medical community just isn't educated about this disease. But, it would be great if they could get it together sometime soon, because people are dying from this disease.

This past year, I have gotten rid of a symptom or two. And I have picked up many more. I've had difficulty walking to the point where I've needed assistance. I've had arthritic-symptoms so advanced that I walk like an 80-year old much of the time. I have lost a tremendous amount of flexibility and muscle control. And that is hard, especially for a yoga instructor who is teaching three classes a week. I've had days where my organs ache and my skin is so sensitive to the touch that I burst into tears when my daughter jumps in my arms. And other days when I am afraid I may have a heart attack. There are many, many days where I feel like I am going to pass out. I've had brain fog so bad that I've forgotten how to spell my last name (it's 5 letters...FIVE), what my Social Security Number is (I've known it by heart since college) and, most recently, how old my daughter is (she'll be 2 next month.) I walk into a room and not know why I'm there so many times in a day that it doesn't even phase me anymore. I often ask my husband the same question three or four times within as many minutes, and have no recollection of asking it, or getting an answer. Many Lyme fighters are diagnosed with Alzheimer's after Lyme bacteria has attacked the brain and caused tremendous memory loss. While I cannot imagine what it must be like to have Alzheimer's, it is clear my brain has not been spared. And it's scary, especially at 37 years old.

In the past year, I have taken oral antibiotics, IV antibiotics, supplements, probiotics, herbal treatments, anti-virals, detoxing treatments, nutritional IV's, lactated ringers and a laundry list of others. I have taken hundreds of detox baths and added edible clay and mila (chia seeds) into my weekly routine to help with the bacteria die-off. Green smoothies are a staple in our household now and they usually include some combination of celery, parsley, spinach, kale, carrots, beets, avocado, spirulina, flax seeds, acaia and some fruit to make it edible. I've gone gluten-free, dairy-free, yeast-free and somewhat sugar-free (but admittedly, I suck at that last one.) I've brought GF/DF pizza and cupcakes to birthday parties so my children don't feel left out. I've lost weight. My husband, diagnosed in November of last year, has lost even more. Concerned family and friends say we are wasting away. I say, we are eating what our body can handle (and what is good for our immune system) and maybe this is just our 'healthy' weight.

Over the past 12 months, I've seen friends and family come to our rescue. I've met some of the strongest people in the world through message boards and support groups; some of whom have become trusted friends. And I've been ignored by people who I used to call 'friend.' It has been an eye-opening experience in this way. People I barely knew, who I would call more of an acquaintance even, have been some of my biggest cheerleaders. It is true what people say. You really find out who your friends are when you are faced with something like this. I get it. What do you say? It's easier not to say anything. Plus, perhaps you did ask me once and I didn't shut up for an hour! I don't know how I would have handled a situation like this before my diagnosis. Now, I get it. And I plan to be there when I'm needed. Even when it is hard to be.

Also, I've learned what it is like to learn the Boogie Man is real. You see, there's a lot of scary stuff out there, folks. A lot of stuff I had heard of but didn't care to learn about until I was diagnosed. Stuff like mold. And parasites. And metal toxicity. And so much more that I will save for another post. You may call me paranoid. I prefer the term 'educated.' You see, Lyme weakens the immune system and opens the door to so much more. And what comes knocking is often times much worse than the Lyme itself.

Many, many people with Lyme have died or committed suicide just in the year since I was diagnosed. I have gone to bed some nights not knowing if one of my new friends, including a child, would make it through the night. It is truly heartbreaking.

In the past year, we have experienced the financial burden of four people treating a chronic, debilitating disease. We received gracious gifts from friends, family and perfect strangers through a fundraiser my dear friend Kathy put on for us, despite her own struggles with this disease. We moved from a beautiful 3-bedroom home to a 2-bedroom apartment, in hopes of getting ahead so that we can fight and so that we can take whatever this disease throws at us.

Lyme is a controversial disease. There are less doctors that believe in Chronic and Congenital Lyme than there are that do. The tide is changing, but we have a long way to go. So, patients of this disease research and research and research. They go to conferences, join groups, see hundreds of doctors and specialists....because not one treatment works for all Lymies. Every patient is different...different strains of Lyme, different co-infections, different toxicity issues (mold, metals, etc.) and so on. You find out fast, that even an LLMD doesn't always know what to do with you. They just throw stuff at you and see what works. So, we research. And educate ourselves. And become our own advocates. Because no one else will fight for you like you will fight for yourself.

This year, I have been...Angry. Sad. Depressed. Anxious. Withdrawn. Outspoken. Weak. Strong. Confused. Focused. Without Hope. Hopeful. And a million other things in between. It has been a rollercoaster.

People in the Lyme community call this rollercoaster a healing journey. I like that. It gives me hope. This has been a very trying year. But, we are taking it one day at a time. I don't see a light at the end of the tunnel yet, but you can't change a 27+ year trajectory in the course of 12 short months. I know many who have been treating for 8, 9, 10 years. Our mission has not changed. We will not give up. We will persevere. We will win one battle after another until we can make it through a day without a symptom in sight. And then we will find the strength to fight another war. A war that prevents people like us from getting the medical care we need. One that keeps hundreds of thousands of people suffering from Lyme - who have no idea what is wrong with them - because doctors are not educated enough to diagnose it. We will get the word out. We will shift the tide on this controversial disease. And hopefully it will not be too late.

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 Thank you to everyone who has helped us on this journey.
We love you and are forever grateful for your love and support. You know who you are.
 


8 comments:

  1. An anniversary toast: Here's to you, for all you have learned and passed on to others, for all you have done for your family, friends, and people you don't know, and for your strength and bravery to share your struggles. I wish you and yours many more years of anniversaries more pleasant than this one.

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    1. Alain, thank you very much for your comment! It means a lot to me!

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  2. Such a great post, Mel. Truly sums up what it's like to live with/face chronic illness. Thanks for doing it with so much grace and class. You make me proud. Love you!!! XOXOXO

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  3. My 1st anniversary will be October 17, 2013. Only a week in, I am so glad I came across your blog now. I have a feeling I'm going to learn a lot from you. It helps to know we're not alone, we're not crazy, and that we can celebrate one another's wins together. Congratulations!

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  4. Hello! I apologize, but I wasn't alerted to your comment for some reason and happened up on it this evening. I am sorry I have not been posting more. It has been a crazy roller coaster! Please ask anything you'd like. I am happy to help in any way. How are you feeling now? You wrote this very soon after diagnosis, it seems...right? I hope all is well! I look forward to hearing from you!

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  5. Hi Melissa,

    I found your blog and have read most of it by now :) Glad to see this comment from you - was concerned about you. I completely understand if you don't have the time or energy to respond.

    My name is Angela and I live in TX. I've been undiagnosed for the last 15-27 years. Was diagnosed in March 2012. Began treatment in May and I'm coming up on my first anniversary at 92lbs, ready to not fight anymore, with full-time stay at home help, and a 16 month old with congenital lyme's that we're waiting to treat until I'm a little better. My email if life4jeus05@hotmail.com if you'd like to contact me at all.

    Will be adding your family to my prayers in every way ><

    Angela

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    1. Angela, I am so sorry you are struggling. I just sent you an email. Let me know if you do not receive it. Hang in there. You will get through this!
      Melissa

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