Search This Blog

August 17, 2012

My Life 647 Days into Treatment

I realized early this morning that it has been a very long time since I updated everyone about my day-to-day treatment.  I have had quite a few huge changes since I began my journey of fighting chronic Lyme 647 days ago (or 1 year, 9 months and 8 days). My weeks are full of appointments and staying on-track with my medication and detox regiment. Here is what a day in the life of me currently looks like (you can see my last blog post about my daily routine here): 

 6:00am  My alarm goes off to take my empty stomach medications. As quickly as I can stumble half awake to the fridge I grab my handful of pills and swallow them down. Then I promptly go back to sleep hoping I can beat the stomach ache from setting in.


9:00am   Wake up again and take another empty stomach medication. This one is a drink that is a binder. It's not horrible tasting, but it is a little gritty. The binder will go through my system binding anything loose to it and pulling it out of my body to be seen later in the toilet. The hope is that the binder will grab onto dead or almost dead parasites inside of me and take them out before they release toxins from dying.

 9:45am-ish Sometimes if I am awake at this time I will eat otherwise I will eat when I wake up. My morning meds are really rough on my gut but they are very important to me winning this fight so I am committed to taking them.  I'm sure you probably realized this, but if I eat too soon the binding medication will adhere to my food and not allow it to provide nutrition to my body.


12pm-ish I eat something for lunch.  I am dairy free, gluten limited, sugar limited which leaves me delicious options for food. :/ I try to always eat a fat, protein and a carb together.  Sometimes, depending on my nausea, this can be very complicated.  One of my go-to foods is celery with almond butter and raisins (my take on ants on a log from when I was younger). Another go-to for me is my afternoon dairy-free smoothie.  My smoothie includes a protein powder, nutritional food in powder form to help my leaky gut, vitamin C, lactose-free Kefir (a probiotics which is a must with all the meds I take), some green veggies (spinach is great because it is mild in taste and avocado is another favorite to add to smoothies too for the healthy fat and it adds a smooth creaminess to the smoothie in addition to the nutritional benefits of vegetables) and a little bit of frozen fruit to help the taste and texture.  This nutritional smoothie looks pretty good but I'm pretty sure I will not *love* smoothies again for the rest of my life just because I have to have them everyday to get all my medications. The fun factor no longer exists with smoothies for me. :( They have kinda been ruined for me, but it's a necessity and I'm committed. After I eat/drink something and my belly is full I take my lunch pills (my lunch meds include another binder that is safe to take with food)


1:00pm Usually my late mornings and early afternoons are full of appointments. I have physical therapy twice each week, Biomodulator and ionic foot baths twice each week, lymphatic massage on time each week, and regular appointments with my Lyme specialist, Lyme naturalpath doctor, primary care doctor and I am looking to add on a cardiac specialist to monitor my heart depending on the results of my echocardiogram next month. Recently, I was diagnosed with borderline sleep apnea so that may come with an additional doctor as well. So far, all I know is I get to add a super cool oxygen device to my house to use while I sleep! Again, I am adding to my personal hospital in my small condo. I currently have my shower chair, IV pole, Purative water system (I now have the best water ever and I'm really good at sharing!), wheelchair, oxygen machine on the way...If only my far-infrared sauna would fit in here! 


Oh, if I don't have any appointments this is the time where I will spend some quality time with my husband or friends. On a rough day I will spend this time in bed.


4:00pm After my appointments/hanging out  for the day I am in desperate need for a nap. This usually happens around 4 for an hour or two.  My hours of sleep required for me to function are decreasing which is super cool too! At the beginning of my treatment I needed about 18 hours of sleep each day to function.  Now I am down to roughly 12-15 hours each day!


7:00pm. Head upstairs to have a nice healthy dinner with my in-laws and talk about their days at work. It's really nice for me to socialize with them over dinner because I love the hospital they both work for and most days they are so excited about things going on at the hospital.  I'm pretty sure one day I will work there again and that makes me very happy. In addition to cooking me dinner, they spoil Diego by feeding him cheese, salmon, chicken or whatever.  Even if I don't have dinner with them on a rare occasion they will still expect to see Diego so they can spend time and play with him. My in-laws (Diego's Grandma and Grandpa) love spoiling Diego with food and making him do tricks. Diego loves it too and if we have not left the condo by 7:04pm to head upstairs Diego is staring at me and making little noises because he KNOWS it's time to go upstairs. I'm still so impressed that he knows what time it is! He cracks me up. 



9:00pm "Drive home" which actually isn't driving at all it's walking down the hall to the elevator and getting off on my floor.  As I leave my in-laws always yell "Drive safe!" which cracks me up because it's such a short journey home, but my night is not over. It is detox time.


9:05pm I start my night off by drinking another binding medication on an empty stomach then I prep my coffee for my coffee enema. I also prep my water bottles of homeopathic drops to drink throughout the next day.  It involves about 20 different drops that each help to build up my body and detox it. One of my favorite items that goes into each water bottle is Synerplex.  It really helps me with electrolytes and keeping hydrated. I am still doing IV drip bags for hydration but not nearly as often. Every night, while I am taking all of this binding medication, I do a coffee enema to pull everything out that is still lingering in my body. This is a long process that involves me making a make-shift bed on the floor in the bathroom. I set up the iPad with a movie or TV show and roll over every 10 minutes or so. I usually spend about 1.5-2 hours for this whole process. It's not glamorous and I will be so happy when I don't have to do them any more but the coffee enemas are a great detox and really help me to feel better. After the enema, I shower and lather my body in a customized Ayurveda oil aka Argabanga oil made specifically for me.  The oil is absorbed by my skin and helps my lymph to turn to sludge and continue to flush everything out.  Often times I don't feel safe to do this whole process alone because it is such a good detox and on these rare occasions, when Justin is working and I don't feel well, my sister, Molly has stepped up and comes over to monitor me.  We yell through the bathroom door about our lives and each time I am reminded at how awesome my family is, especially my sister Molly.


11:30pm Another thing I do nightly is my Castor oil pack placed on my entire belly and lower back. Now I am REALLY exhausted. My body has been fully detoxed and I am ready to sweat out more toxins during my sleep.  I try to keep sweating as much as possible to give all this crap in my body every opportunity to get out as possible! I do remember to take my empty stomach medications again and then fall asleep with the castor oil pack on.  Then, I wake up at 2am or so. I simply remove the layers of castor oil, the heating pads and plastic from my mid section, wipe off the excess oil then crawl back into bed.  



Starting later today I will be doing another IV antibiotic and adding it into this equation. In the last week I have had three doctors appointments and everyone agrees that I am slow but surely getting better! My crazy treatment is working!!! I still have no timeline or answers to when I will be "all better", but I am finally moving forward instead of being stagnant in my treatment.  My body wants to get better and is fighting hard to get rid of the disease.  One way I know this is I did a brain toxicity test which three months ago my brain measured lots of toxicity. Last week I did the same test and it showed some toxicity, but it was low enough to be negative to toxicity levels!!! This measure may move up and down a bit but I was so stoked to see that result!!


My doctors have even been talking to me about doing the hyperbaric chambers (finally!) and a few other things that proves how far along I've come!  By no means is the fight over, but I am so happy to be moving forward in my treatment.  Yesterday, I got the best text message/phone call ever which is a huge stress reliever for me....more about this later.  ;)

So that's my life right now. I am happy to report that even though it is long and tedious I know things are working which is so encouraging! Who knows maybe in the next 647 days I will be cured* from Lyme and finally be pregnant :)

*My understanding is that the jury is still out if someone can actually be cured from Lyme because I can relapse months or years later.  So I guess the more appropriate term is I will be in remission from Lyme.

I hope everyone has a wonderful day! I love you all and appreciate you reading my blog and trying to gain more understanding about this complicated disease. If anyone is interested on writing a guest blog I'd love to feature you on my site just let me know!

No comments:

Post a Comment