Caravan Sonnet: the Lyme diaries: a day in the life (currently)

10/6/14

the Lyme diaries: a day in the life (currently)

{Disclaimer: The information included on this site is for educational purposes only. It is not intended nor implied to be a substitute for professional medical advice. The reader should always consult his or her health care provider to determine the appropriateness of the information for their own situation or if they have any questions regarding a medical condition or treatment plan. Reading the information on this website does not create a physician-patient relationship.}
Happy Monday sweet friends! Today I am excited to start a "series" that will hopefully help some of my readers who are struggling with Lyme Disease or just some of you that are wondering "exactly what in the world is she dealing with?". Since sharing my original diagnosis of Lyme Disease in March 2013 and continuing to share updates on my health through my "Notes on the Porch" posts I have received many emails asking a variety of questions on treatment, advice, ideas, and a host of other things. At first I was able to share my limited knowledge with ease because these emails were not so frequent, but since writing the "What is Lyme Disease" post in May these emails, facebook messages, etc. have quadrupled and I have struggled to answer the several hundred emails a week. (Let's be honest... I have not been able to answer even half of them.) For a while I hesitated to address my thoughts, advice, ideas because I feel that I am still learning and at the same time have often used this blog as an "escape" away from "sick world". 

But this past week I received an email that changed the course of this decision for me. This email was from a man who had lost his sister to Lyme Disease and he was begging me to share my thoughts and advice so that others don't have to walk the road that she did. (And to those of you whose mouths just dropped open, yes, you can die from Lyme Disease and its complications.) The reality is that this is also something that I have been praying about sharing for a while also because as y'all know I wouldn't want anyone to experience this or go through this. SO... in honor of "8 hours on the 8th" on Wednesday and Rebecca's Run at the end of this month I am going to sharing a series called "the Lyme diaries". My prayer is that this will be helpful and knowledgeable information and will help spread the word about Lyme Disease. I do want to put a disclaimer in though here at the beginning: Lyme Disease is complicated for doctors to treat because it manifests itself in so many different ways for patients. My little thoughts and advice will be more general in hopes that it will be a helpful starting ground of information to help the patient and also information that they can share with others no matter how Lyme Disease has affected them. Also... there are many wonderful people who write about Lyme Disease and share their exact treatment protocol (including herbs, vitamins, and medications) and that is lovely but I have chosen not to do that for a variety of reasons. I appreciate your kindness in respecting my privacy! 

So to start off the Lyme Diaries I wanted to share what a day in the life of having Lyme Disease looks like for me currently. If you follow me on instagram you might remember this post here about laying out my weekly vitamins, herbs, minerals, and oils schedule. I do that every Sunday (to start the new week) and will be sharing a little bit about my planning in the series in the future. While some things change the following is the daily schedule that I have right now:

5:30am- Wake up and take medication
5:30-7:00am- Go back to sleep (or doze). I make it a point to keep my room dark and to lay still even if I can't sleep so that my body is still resting,
7:00-8:00am-spend specific time praying through the healing verses in the Bible
8:00-8:15am- Wake up, light stretching, and drink 1 bottle of Smartwater, apply oils
8:15-9:00am- Fix Detox Bath, Dry Brush, Light Stretching, Drink Aloe Vera Juice, Take Detox Bath
9:00-9:30am- apply oils, eat breakfast, drink Smartwater, take supplements, herbs, and medications
9:30-10:30am- Either work on writing (book, freelance projects, articles, or blog) or have hyperbaric oxygen appointments, doctors appointments, acupuncture or reflexology appointments
10:30am- supplements and apply oils, drink Smartwater (with apple cider vinegar)
10:30am- 11:45am- Nap (or doctors appointments)
11:45am- Eat snack and take supplements, medications, and apply oils
11:50am-12:15pm- light stretching and follow "exercise regime" (my exercise regime is simply walking down the hallway - which is a HUGE accomplishment and doing certain yoga poses ... everyday I work to strengthen my body somehow!)
12:15-1:30pm- Writing, Answering Emails, Blog Writing
1:30-2:00pm- Eat Lunch, take supplements, medications, and apply oils
2:00-2:30pm- Answer shop emails, work on organizing shop orders, take pictures for the shop or gather supplies for future shop inventory
2:30pm- supplements and apply oils
2:30-4:30pm- Nap (or doctors appointments)
4:30pm- snack and take supplements, medications, and apply oils, drink Smartwater (with apple cider vinegar)
4:30-5:30pm- Work on Shop orders, Package up shop orders, Create (either in the scrapbook room or from my bed depending on how I am feeling)
5:30pm- supplements and apply oils
5:30-6:15pm- Fix Detox Bath, Dry Brush, Light Stretching, Drink Aloe Vera Juice, Take Detox Bath
6:15-6:30pm- rest after second detox bath
6:30-7:00pm- Eat dinner, take supplements, medications, and apply oils, drink Smartwater
7:00 to (usually 8:00pm sometimes 9:00pm)- Watch TV (if my sensory nerves can handle it otherwise I read in bed), work on shop orders, create things for shop, or work on writing projects
8:00pm-Take nighttime supplements, medications, apply oils and head to bed

This is pretty much my life everyday. *smiles*  And yes, it is that regimented in order to get in every single supplement, oil, and medication that I need to take. While there are a few exceptions (once or twice a week I make a point to chat with friends, etc.) this is pretty much how life looks right now. I hope this is helpful in understanding how regimented the life of a person who has Lyme Diesease is. I think that sometimes people think I am just laying in bed eating bon-bon's all day long. *smiles* BUT in all seriousness everything that I do is focused on getting my health back. While this is a very rigourous schedule (and a very isolating one!) it has also provided me so much opportunities to spend hours and hours in prayer and with the Lord and that has been a blessing in this journey! 

Well friends, as I said at the beginning I hope that this series is of help in understanding more about Lyme Disease and helps answer your questions! If there is anything specific that you would like to have answered let me know and I will do my best to write a post about it!! 
Happy Monday y'all!

8 comments:

  1. I think it is absolutely amazing how hard you are working to take care of yourself physically and spiritually! It takes a lot of will power and strength to have that scheduled of a day and to not just sit around eating bon bons, lyme disease or no! A lot of people would understand if you did, but look at all you are accomplishing! You are an inspiration to so many. Thanks!

    Sue//Chevron and Lace
    susanstange.com

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    1. Sue,

      I just had to take a moment to write you a small note to say thank you so much for the beautiful comment that you left on my blog this morning. Your words of encouragement were such a gift to me - especially today on a day that has been a quite difficult health day. Words can't begin to describe across this email how much I am grateful for them. Thank you so much for your beautiful encouragement to me!

      Thank you again so much!
      With humble gratitude,
      Rebecca :)

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  2. Wow Rebecca - this is so interesting. Thanks for shedding some light on what a typical day is for you!!! I can't believe how often you are applying oils and having to take medication. Hugs friend

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    1. Aww thank you friend for all of your sweet comments and prayers!! I am so grateful for them! Your comments are always so sweet and are such an encouragement!! :) Yes, the oils, meds, and supplements ... its basically an almost hourly thing at this point. Some of the oils are young living oils that I use and others are medications and medicinal oils that right now my system can't handle taking orally. This helps me absorb what I need to but because we are attacking so many different things that Lyme has done to my body we have to be crazy careful about the timing of everything (so many herbs and supplements can't be within a certain hour of certain meds or even other supplements!) It is a definite lesson in being disciplined that is for sure!
      :) Hope you are having a wonderful Monday!
      :) Rebecca

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  3. What an example you are! Your dedication and discipline in your daily routine is amazing. I think a lot of people would just give up having to go through what you go through but reading this and thinking of you doing this day after day is absolutely commendable and such a testimony! I'm praying for you and sending lots of love your way, friend!

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    1. Thank you so much for your kind words Sarah! The Lord has been so good to be ever present in this journey with me - even though there are definitely days of discouragement and frustration. I am also so blessed to have a supportive family who is a constant encouragement to my little heart!! Thank you so much for your encouragement and taking the time to leave such a lovely comment that truly has blessed my day! Thank you so much for all of your prayers!!!
      Many Blessings,
      Rebecca :)

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  4. Weird as it sounds, I love reading this. I did a day in the life post a few weeks ago (which I felt rather brave for doing with my health problems and needs and thus very abnormal schedule), and seeing someone else's revolving around their health is ... comforting. :) I felt overwhelmed with the few supplements and routine things I've added to my day since I put up my day in the life post, so you are incredibly strong to stick to this schedule every day! It makes me admire you that much more to see this small glimpse into your daily life. I'm new around here, so in risk of asking something that may have already been answered in other posts, I have to ask: do your supplements, oils, detox baths, etc., seem to be helping? I so hope they are, honey!

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    1. Kacie,

      Thank you so much for your beautiful comment. I completely know what you mean by feeling comforted by seeing other peoples "day in the life" as they are fighting health issues. I think often times it reminds me that I am not the only one who is fighting for her health and I often feel inspired to continue my own journey. I would love to read your post. Could you send me your link? I am constantly overwhelmed by changes that occur with different supplements, detox routines, etc. - like with some things that occurred this week! So I am so grateful for your words of encouragement! They definitely have come at a good time!

      To answer your question... most DEFINITELY yes the things that I am doing are helping. I admit that for a while (before I was strong enough to add in different medications) it felt that I was just treading water, but now I see that the routines that I started truly helped me to become stronger and are helping me heal. Many days it is hard to see the small steps that I am taking are helping me get better so on those days I like to think back in a "broader" spectrum and think in yearly progression. Two years at this time my digestive system had completely crashed and I wasn't even able to eat more than THREE foods and was dealing with unknown answers, traveling across the country to find answers, and was dealing with feeding tubes, etc and was eventually headed for a wheelchair. Thinking back to that time helps me remember how far I have come and how far I will be in another two years. While it can seem discouraging I have definitely found that pressing and plugging away on the small things day in and day out will eventually "pay off". My biggest encouragement is to remind yourself each day that you do the best you can. Yesterday didn't really go great for me due to some other health issues, but I am confident today will be better. I am confident that reading your email you are doing an amazing job with your health!! Keep pressing on!!!

      Thank you again for your sweet comments Kacie!!
      :) Rebecca

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