Weekends are by far the hardest time. I think my whole family agrees. It’s the time when theres no security of a doctor around or filled with the extra waiting time to hear back on test results. Everything always feels like its on an extra long stand still. Despite how much work has been put in, this whole time has felt like a long, standstill. I hate the uncertainty of everything. I’ve already expressed my lyme fears with you guys— and with each passing day, I’m more certain, it is lyme. I have two main doctors here in Massachusetts that I’ve been seeing (outside of many other specialists). One thinks it’s unlikely, the other states, “I would be surprised if it wasn’t lyme” and “you’d be on antibiotic treatment by now if it weren’t for the c. diff.” Every single symptom matches. There’s no way I can deny it now. I’ve overlooked, shrugged off, and denied it for months– but it’s real.
I’ve been frustrated time and time again with remarks from doctors, “you just need to take better care of yourself” or “are you drinking enough water? you need to drink more water” (as if 90 ounces of water a day wasn’t enough) or “it’s just anxiety, or depression, or chronic fatigue”— “do you want ibuprofen for your pain? Maybe some aspirin?” as if I’m just sad, and not taking care of myself– or like I want a bandaid to be a temporary cover for the pains I feel throughout my body— or worse yet, like I actually want to be in this miserable stand still place. Every single day is day that I take care of myself, more than I ever have before. I’ve dealt with anxiety and even depression— I know what those things feel like. Yes, at times I feel hopeless and helpless, but I think anyone would under these circumstances. I miss the go go go, the days filled with happy, busy moments. I miss my productivity– the good feeling I get at the end of the day when I know life and myself have been filled with hard work and joy.
I don’t know, this post isn’t coming out like I thought it would. I didn’t mean to come here and rant. I feel like I could write a ten page article filled with rants of this current time and the treatment (or lack of) I’ve received. To be quite honest, I don’t even remember what I came here to say. I know I wanted to come and write— to spill my current thoughts, but my positive thoughts got unintentionally swept away.
The goal for this week is to build a plan. I’ll continue on herbals, I’m still putting much of my faith and hope in that. I also have an appointment to meet with my dietician once again. And I will also meet with a c. diff/fecal transplant researcher/doctor— not to necessarily have a fecal transplant procedure— I’m past that point, but instead to learn more about the c diff and what it means for my future, especially with antibiotics. And then I will meet with my third (and possibly fourth) infectious disease doctor this year. (Two infectious diseases in one year, do I win a prize? Can my prize be a cure for everyone? I’d like that.)
Internally, my goal is to continue to build my immune system— I’m at a point where I know lyme will live inside me—there’s no way around that— and that has to be okay. But more than that, to have any sort of life, I have to find my strength through health back. I’ve gone through many emotions and fears, as you guys know— and saying them out loud (or written out) last week helped. (thank you). So now I’m still just trying to feel comfort each day in this in-between– as completely uncertain as it is. I’ve lost things in this process, I’ve lost part of myself, my normal, my routine, some friendships, some jobs, my future plans— but I’m still here and right now, in this in-between and this unknown future— it has to be good enough. And whatever will be, will be. I’ve been in uncertain and scary places before, and I’ve come out on better than ever, I just have to believe and know, that can happen here too.
These photos? They were taken a few weeks ago— on a three day up swing I had. It seems that I have about seven “up days” a month now. I’ve always wanted to be able to take Marlowe and Alex here. It’s been years since I visited– I had spent many of my teenage days at this place. We didn’t get too far on the path, but we made an effort and I’m grateful for that.
And if you’re interested, this rock trail is in Sutton, MA. And appropriately enough, its called Purgatory Chasm.
purgatory
-serving to cleanse, purify, or expiate.
chasm
-a marked interruption of continuity; gap
I hope you guys all had a great weekend. We originally had a trip the caribbean and mexico planned for this weekend/week, but life happens and plans have to adjust. On the upside, Alex was able to use his time off to come back up here. It’s been a few weeks since we’ve seen him. It’s been a welcome change to have him here and Marlowe has been super ecstatic to have him cooking for her. Not sure enow long he’s here for (I don’t really want to ask), but I’m hoping we can make a good few days out of it. Have a great week friends. Sorry for the unintentional rant and thanks for being here, despite all the not super bright, real life stuff.
UPDATE: I just want to come back here and say that after more tests, we’ve comfortably ruled out lyme– but have no answers to what is going on. It seems as if everything is still stemming from the gut but no doctors have been able to tell me why I can have such intense body and head symptoms from my gut struggles. I’m learning that the medical world has a long, long way to go before they really understand how our gut system works.
marlowe’s dress c/o 3claps.
me: hat / pants / purse / similiar boots
19 Comments
it really sucks that you're going through all of this crap.
not knowing what is wrong with your body is the worst feeling.
even if the answer is a bad one, at least you'd have an answer.
even though i don't know you, i'm here thinking about you.
sending positive thoughts your way.
hillary
Drea, I totally sympathize/empathize/feel for you. I pray that a diagnosis comes quickly so that you can know the definite next steps to take to heal your body. *hugs*
Hi Drea,
It's so soad to read how awful you are feeling. Wishing you a speedy diagnosis and hopefully you will be soon on your way to treatment and recovery. These photos are beautiful, glad to see you out and about with your family.
Lauren
http://en.emoi-emoi.com/blog/
Your post resonates with me on so many levels. Last summer I was bed ridden, couldn't work in the garden, cook for my family, clean my house, etc. I received a diagnosis of Lupus, I was crushed physically, emotionally, spiritually. In the past year I have seen every kind of specialist had every kind of test ran. In my lowest point I felt that my life was over, no more traveling, hiking, working, taking care of my family. My amazing husband read everything he could get his hands on, we implemented an anti-inflammatory diet, juiced, supplements and vitamins, etc. The biggest key for me has been acupuncture and Chinese herbs, I feel like I wouldn't be upright without it. Please know you are in my thoughts and prayers.
Hi Drea : ) I've always loved your blog and have been praying for a complete recovery for you. I think it's great that you are being real about what you're dealing with. I've seen the Holy Spirit heal people when modern medicine failed. I will continue to pray for you to have peace beyond understanding , hope, joy and 100% health. Get well soon!
You popped into my head on my drive home from work today and I just wanted to let you know that you're in my thoughts. I've heard Lyme is a difficult diagnosis to get and get treatment for and I hope if you do have it, that you can get treatment soon (and effectively).
You are in MA! I grew up in Worcester County (Spencer actually) and my dad would take us to PC all the time!
I'm so sorry to hear you are working through this illness! I know three people who have dealt with Lyme and, like you, many doctors don't fully recognize it or seem reluctant to diagnose it. One of my friends focused on changing his diet to eliminate dairy, carbs, and sugar because the infection feeds on these? I know you have a great diet to begin with, but maybe something in your diet could be altered to help some? It must be so hard to not have antibiotics as an option. Like someone else said, I have heard that essential oils can be an alternative. Praying for you. Hang in there. It will get better.
I just really appreciate everything you have to say, rant or not. It's always great to hear from you when you feel up to it and to share in your journey in some way. I'm glad you're calling out the health community that doesn't listen.. Many great practitioners out there but far too many just miss the empathy boat big time. I'm thinking about you and continue to send every positive wish in your direction. Lately when I get an eyelash on my cheek I make my wish for your well-being. Silly perhaps but everything counts I say. Hugs galore!
I am praying for you! As a person with a ton of weird illnesses, I want to tell you that there is still a full life to live, even if you're sick a lot.
Thanks for sharing and love from Germany,
http://www.fatcatconnection.com/#!on-almightiness/cmbz/559ae52a0cf28e68712c7f4e
Lisa
I think that does sound positive. You sound like you are making the best of what you are dealt. You are inspiring. I just know you'll be better. It's like you said, life always seems like when it throws you the hardest battles the pay off in the end is always leads to the greatest good.
Hi Drea,
Tried to leave a comment through my phone but it didn't work, so I'll give it another try 🙂 I hope that you'll feel better soon, and I thought you might find some inspiration in a book titled The Path of Practice by Bri Maya Tiwari–it's about healing through breath, sound, and food, as well as the author's personal story of healing/finding a new center after a bout with ovarian cancer (I believe it was ovarian) —
Best wishes for you and your beautiful family,
Wren
Because antibiotics are out of the question… have you looked into other possible remedies for potential Lyme's Disease? I'm working on becoming a certified aromatherapist, and while looking into some options for a friend with Lyme's I did come across some cases online where essential oils helped. Granted, it involves ingesting oils (which should be done carefully and under the eye of a professional), but since you don't seem to have a lot of options, it might be worth looking into??
Beautiful pictures as always, Drea! I can't imagine what you're going through but every time you write a new post I read it asap to see how you're doing! You are so strong and so inspiring – keep moving forward!!! 🙂
~ Samantha
On a positive note, as I read this blog post I'm eating one of your smoothie bowls from your Mise En Place book. I have spent years taking my health for granted and you are helping me realize that I need to take care of myself. Over the past couple years I've been plagued with poor energy and chronic injuries, I wouldn't be surprised if it's all related to inflammation from crappy food. My plan is to detox (using your book) during the next couple weeks. I turn 30 at the end of the month and my gift to myself is a fresh start and better relationship with food.
THANK YOU.
I just want to say – YOU CAN DO THIS!
Dealing with all of the different doctors and diagnoses must be very frustrating, and to be told to take better care of yourself or to drink more water and take an aspirin would make me absolutely livid. Sending you a cyber hug Drea. CJ xx
Oh gosh. Lyme disease can be so difficult. I wish you complete recovery & diagnosis as soon as possible! <3
Dear Drea, thank you for ranting, while I'm definitely not dealing with half of the things that you have this year I was diagnosed with hashimotos thyroiditis and adrenal fatigue. I am sorry that you are going through such a rough patch I can't even imagine how you are feeling! I love reading your blog, and I find so much encouragement in your hope! You encourage me to keep hoping that I will one day get better and that I have to keep driving forward and not give up on myself because there are many days when I get so sick of my strict diet and not being able to do everything I used to and having to take so many supplements each day. Thank you for writing this because I am encouraged that it is not all for nothing and that I just need to keep trudging forward and not loose hope!
Love and prayers your way,
Kristiana