June has come back around.
It has been a year since I quite suddenly became unwell.
I remember the night that it started – a Friday night – wide awake half the night, my lungs overcome with pain and feeling like they’d been deflated, my head dizzy and full of pressure, my heart beating faster than a Shakira song and my mind petrified about what could make me feel so wrong. The next night, I slept sitting up because every time I laid flat I thought I was going to die.
On Sunday I went to the Doc in the Box, positive that whatever was making me feel this near-death would be immediately evident to whatever doctor drew the short straw of the Sunday afternoon shift.
How nice that would have been.
It took four agonizingly slow months, six doctors, and a dozen tests to get a diagnosis of exclusion – a diagnosis that says “We acknowledge that you are sick. We see the problem. However, we have no idea what is causing it. Here – take some pills to control the symptoms.”
The diagnosis was Dysautonomia, and the drugs were beta blockers, designed to make my heart slow down. Those pills have been a blessing and a curse. A blessing that they have helped with most of the symptoms many days, and a curse for their side effects (hello exhaustion, hair loss and weight gain.) But I realize exactly how valuable they are when I forget to take one, become nearly (or literally) bedridden, and am reminded how very, very sick I still am – and that I’m just masking a mysterious behemoth. I’m in the process of trying to completely change medication types right now, hoping to find a way to have more good days than bad.
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All of the initial tests gave me a way to write about what was going on without being too serious, but the last six months have been difficult to spin. I’ve written half a dozen update posts since, but have published none of them. They contained the long, painful details of the process, the symptoms, the feelings, the side effects, the frustrations. But every time I started to re-read a post for editing, they felt so arduous that I couldn’t make it through them again, so I certainly couldn’t subject anyone else to them.
But that’s the problem. Writing is often grueling now. Getting thoughts to form and being able to write them out is impossible at times – and it’s made worse when I go back and comparatively read my writing from over a year ago. I think to myself, “I was so much better. Will it come back? Will thoughts come easily again?” Your kind words and support have meant infinitely more to me in the past year.
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I’ve spent nearly a year being convinced that there is an underlying cause for my illness – if only we’d look a little deeper, do a little more research, run one more test. Could it be my head injury? The bats and their guano? One of a million rare syndromes? And as more problems surfaced and issues were diagnosed – my compromised immune system, my eye issues, and so on, my hope deepened – surely the more ingredients there were to add to my Dysautonomia, the greater the chances were that when mixed together just right, they would present a solution.
But neither that Doc in the Box nor the eleven other specialists I’ve seen since can find it.
One even stared at me, troubled, for a whole two minutes. Then said, “Please come back in six weeks and tell me what you’ve figured out. I don’t want to lose track of you.”
But after the last round of tests that took over three months, a few hundred dollars, and zero helpful takeaways, I feel done. It’s time to accept the fact that I may have a chronic illness that can only be controlled, not eradicated. And even the control is partial at best and completely unpredictable.
That realization has been difficult for me to swallow. I’m a fairly unemotional person, but trying to work through the reality that the past year may be a preview of the rest of my life has brought out tears, anger, and sadness. But also, a seeking of God’s promises and comfort like I haven’t needed to do in a long time.
I hang out in the Psalms a lot – David’s raw emotions and honesty with God and God’s responses to it have always been a comfort to me. Another reassurance came through 1 Peter 5:6-7…Humble yourselves, therefore, under God’s Mighty Hand, that he may lift you up in due time. Cast all your anxiety on Him because He cares for you.
Other times when I’ve read that passage it felt very forceful. Get yourself humble, to the ground and under God’s hand!!, but now it feels safe. I am under God’s Mighty Hand. I know I am – I have personally experienced Him in miraculous ways that prove to me without a shadow of a doubt that He is there and He cares for me – personally – and even by name.
So where else would I rather be?
Where I am is where He has me right now. What I am dealing with is what He wants me to be dealing with right now. And He has already blessed it by using the fruit of my trials to help others. I don’t think He expects me to live every moment of it with a skipping blissfulness (He knows me too well for that), but He does know what He is doing.
And I can trust that even if I continue having no idea what is wrong with me or how to get better, He has me under His hand.
And those are sustaining words. As long as I go back to them regularly.
Rachel, what an encouragement your words are to me today. I’m not facing illness, but everyone has a “thing” they’re going through, and your reminder that “Where I am is where He has me right now” is so good. If you have the energy, check out Lamentations 3:19-30. I know that’s not usually where one goes for comfort (like you I like to hang out in the Psalms), but that passage is awesome. I really like the Message version the best.
http://www.biblegateway.com/passage/?search=Lamentations+3%3A19-30&version=MSG
I don’t believe your writing has suffered, I still look forward to and read each of your posts. :)
-Emily in Florida
Thank you for the verses! Those are very Psalm-like Lamentations. Must be why we like them. :-) And thanks also for the encouragement – I always love catching up with you and Travis and your family.
I rarely comment because I try to ensure I only ever add something valuable. To that end, my heart wants to hug you. Its nothing to the level or extreme of your diagnosis, but I have had life-altering medical changes occur in my life. And it rocks your world. But please remember that you first and foremost should continue to live. Science is making new discoveries every single day and who knows what the future may bring. So have hope but live, laugh and love. Your passion for life (and photos) make others smile and that’s in just the past year. So you’ve got this girl! I’ll keep you in my heart.
Thank you so much, Stephanie! I do think that they’ll figure out what is going on with MANY girls our age in the next few years – there are way too many of us sick.
I can’t see that your writing has suffered at all. I just love the way you put things and your perspective that makes things so funny. But I understand what you mean when you say you look back and see the differences yourself. I see a distinct difference in how I wrote things between now and back before Rusty died. Not the same thing, but still a life-altering experience, as being diagnosed with a chronic mystery illness.. And I’m sure the meds contribute to that feeling for you.
I agree with Emily in Florida – that Lamentations passage is wonderfully comforting. I like the traditional NASB or NIV for it best. :)
Thank you! I agree that those two things are equal in their ability to change perspective and experience and therefore writing styles.
I know God has you right where He wants you at this moment. That will not stop me praying every night for your healing and more answers and more days you feel better than worse. I dislike this disease with all my being and want you healthy and happy, feeling well and active. Press on Rachel..
Thank you so much! I appreciate your prayers.
I too needed to hear your words today. It’s encouraging to me to see someone with seemingly so many reasons to be negative and to choose to still seek God in the midst of your struggle. I have been wondering frequently about how things were going with this. Thank you for your update and willingness to share even your hardest days with us. Prayers will continue for answers and comfort for you.
Thank you! I appreciate it. It’s one of those things that I knew I needed to write an update post about, but it just kept coming across as “BLEH” to me. I guess I can’t separate myself from the post to read it objectively…
Beautiful words. Don’t think for a second that your writing has suffered, you’re just changing your perspective. I still look forward to all your posts, serious or not. You’ve got a lot of “imaginary internet friends” that are thinking of you and praying for you. It sounds like you’ve got a pretty good grip on things! Keep taking joy in those sunsets & sharing that joy with the world! :)
Aww, thanks! I don’t think y’all are imaginary at all! I’ve quit referring to people as internet friends. You’re all just friends now.
Very lovely, very encouraging, very fruitful….love this.
I’ don’t comment often, but I took the time today to say that I admire your strength and courage facing the challenges you are. There is no need to compare your writing to last year and criticize your work – I still check in every day and have not noticed one difference in your writing abilities. You have a real talent with words and photography. God has blessed you with some real good things to go with those difficulties (including two beautiful children and a whole and healthy and happy marriage). Prayer provides great comfort… as you recognize… and God loves you just the way you are! Every day!
Thank you, Karen! That’s very encouraging. I really appreciate it!
I’m so sorry Rachel. My family knows all too well what you’re going through. My husband has been dealing with inexplicable chronic pain for over a year now and no doctor is able to pinpoint the cause or make it better. He’s on narcotics but even those don’t control the pain. One doctor finally diagnosed him with fibromyalgia but we’re a little disbelieving of that. How does a perfectly healthy 31 year old man (now 32) wake up one morning in sudden excruciating pain when there was no accident or injury or otherwise traumatic event? And where is it coming from when every test, every scan, every MRI, every x-ray has come up with nothing? It’s changed our entire life and there are days when I just want to scream because I miss my healthy, happy, pain-free husband. He misses that version of himself too. It’s a hard reality to adjust to. And we don’t want to accept that it’s our reality. We want it to be temporary. But is it?
I will keep you in my prayers. I’m so sorry you’re going through this. (((hug)))
Oh no – I’m so sorry! Chronic pain is something that I would find unbearable. I will pray that you guys get true answers soon!!
Thank you so much for posting this! I was actually on the verge of emailing you to inquire about your health. If you are where you are supposed to be and you are doing what you are supposed to be doing (according to the Spirit’s leading, not your own expectations), then be there and God will do his work and deliver you in due time.
That said, what a drag!! I hope healing finds you quickly.
Thank you!! I appreciate the encouragement. I hope you guys are settling in well – it looks like it on Facebook!
Thank you for sharing your inner most thoughts. I, too, have a hard time penning my thoughts, but know it is healing. You are not alone in your trials of health. There are so many with personal health issues or a close family member that does. It does rock our world! I feel its not fair! I want to say to myself and others… that “I am done. I am spent and cant do this any longer.” I, too, rely on a higher source. God. He and Jesus Christ know each one of us and know our needs. I have felt buoyed up many times. I feel that its because of my own family and friends’ prayers. Life is hard…..and I want to ask, ” Really?” But also realize that making it through helps us be that much stronger of a person….ready to help others in their plights. So I thank you for sharing! You’re a beautiful writer and I have loved discovering you and your blog! You have a gift! You make me laugh! I love denim, too! I love yourpost about “unclaimed baggage”. My daughter and husband are vacationing in Alabama in July and I told them they HAVE to go there… for me! Haha Bless you for hanging in there and keeping your head up and sharing with us your thoughts. I hope you are able to find answers to rid this. You are a beautiful person. I feel uplifted when I read your blog and facebook posts. It makes my day!
Thank you so much, Jolene! That’s really exciting that y’all are vacationing here. I hope you guys find some great stuff at Unclaimed Baggage! Where else are y’all going?
Rachel, You are an inspiration to all of us who find that life is unfolding differently from the ways we had hoped. I still love your blog and I’m praying for you!
Have you considered that the reason you felt so bad after not taking your usual dose of beta blockers is your bodies dependency on them which will have built up far quicker than you’d think. I had a very similar thing and coming off of the downers (like beta blockers) was awful. Doctors rarely warn people about just how bad dependency can be.
Just throwing another possibility out there.
That’s a good point and could very well be true. It’s actually encouraging, since I’m trying to wean off the beta blockers to try something new. I’m hoping it will get better soon!
I read this with tears in my eyes. I had a diagnosis of dysautonomia in 2001. I’ll spare you the story here, but I know exactly how you’re feeling. I could feel it all as I was reading it. I know how hard it is to not know, not understand, to be just overcome with feeling miserable. But not miserable enough that others can really understand that you’re sick. It was so hard, and it put my life on hold for a couple years. My symptoms were really well controlled with beta-blockers, and when I had to go off them suddenly because I was pregnant with my first child, amazingly, my symptoms were gone. So thankful. I don’t know why, but I will pray the same happens for you. I was sick before I had kids, and now I cannot imagine how I would function as a mom with busy little ones to be so overcome with general malaise (a word I hate but that perfectly describes how I felt). Anyway, praying for you. Please keep us posted. And if you ever want to talk, feel free to message me.
Thank you for sharing! I’m so glad you are doing so much better. I will definitely hit you up if I have questions!
Beautifully written post! I, like many of the other commenters, don’t think your writing has suffered I just wonder how you have to time and energy to write at all, while dealing with illness and homeschooling two kids!
Thank you! I’ve reduced my post numbers, am slower at answering comments (although I LOVE to interact), and sadly don’t have as much time to read my reader’s blogs anymore, which I miss tremendously. So basically I’ve just had to make “production cutbacks” to fit it all in.
I’m a loyal reader who rarely comments, but I felt I had to tell you just how amazing you are. I agree with other commenters before me… I feel that they have said everything I want to and there’s not much more to add, but I wanted to let you know that even though it’s said up there, I myself feel it also. Much love to you and your family.
I started reading your blog because you write about your life and kids the way I want to. Your hilarious outlook makes me laugh out loud and gives me renewed energy – through a healthier lens – to do this whole motherhood thing. That being said, the transparency in this post is just as wonderful and even more encouraging. It’s so powerful to be able to hear the “me too”s that are already filling up your comment section. Your attitude is beautiful, but I know that knowing and living something moment by painful moment are two very different things. When you’re too tired or frustrated to bring yourself to God, know that you have many people who are bringing you there in their prayers. I am one of many. May this disease be short-lived, but may it not go wasted in bringing about the beauty that only pain can bring.
Thank you – that’s beautiful! I’m glad it was encouraging, because it certainly didn’t feel encouraging to me. Somehow I guess it’s more encouraging when it’s not me reading it. :-)
<3
I too, like so many others don’t think your writing has changed through all of this. You are still my favorite blogger, the one I’m always telling people about ( I point to the purse from Karama that I won from your contest, ty!) and start telling all about you, Karma and now your sunset pictures. I pray that you will someday find an answer or healing but until then my God give you peace that only He can.
That’s fantastic! I really appreciate it. Thank you!
I agree with everyone else I can’t tell that your writing has suffered. Your post was just what I needed today. Although my medical issues are not as serious as yours I have been for years aware that there is something not right but no doctor can seem to find anything it is frustrating. This added with a feeling of restlessness with my life in general has had me down lately. Your post helped me remember that I am not alone and God has a plan even if it isn’t mine.
I think tonight I might get lost in Psalms for a refreshers.
Thank you! I will pray that you get answers soon as well.
This is so encouraging, and I too enjoy your posts a great deal! With all the ugliness in the world today it’s so refreshing to see someone in your circumstances turning to God, and not in a ‘pity me’ sort of way but in a ‘hey, look at what I found, let me share it’ sort of way. Like another person said, we all have something we deal with, but we get to choose HOW we deal, and you are doing it right! Keep writing as long as you feel like it, I will keep reading. I will add you and your family to my prayer list. God Bless :-)
Thank you!! That is very sweet.
Beautiful post Rachel. Continuing to pray for you!
I hate that this is something you’re still struggling with, and even more, that it’s something you don’t see an end to at the moment. I can tell how disheartening it is to you, and it just breaks my heart. I’ll keep you in my prayers, sweet friend!
It has been hard watching you suffer and wonder this past year. It has been a blessing watching you trust and rest in God’s hands though. While you feel your body failing you in so many ways, you have been used to save lives from trafficking and to lift spirits with your writing that continues to engage, amuse, and delight. I want so very badly for the doctors to suddenly scream, “We’ve got it!” I want you to wake up feeling like you could run a marathon. I want to see the questions and the weariness that I see in your eyes be replaced by rest and peace. We continue to pray and to trust, and we delight in knowing you do the same. Love you, my friend. I’m proud of you daily, and I’m happy to walk life’s journey with you…even when the trail makes no sense. I know God’s in control. Trusting alongside of you.
“We’ve got it!” would be great. “Run a marathon” – probably not going to happen. At least all in one day.
Okay, I am now committed to praying for you whenever I pass your exit or I see one of those hateful near-naked ladies signs. not that you remind me of the near-naked ladies, but at least some good might come of them. I’m sorry you are having to go through this.
I’m honored to be remembered by the near-naked Ginsburg ladies. Kinda? :-)
I am sorry you are having to deal with this sickness. But you are an encouragement, and God will take care of you. I’m an old-school-hymn kind of gal. And this is one of my favorites.
1
Be not dismayed whate’er betide,
God will take care of you!
Beneath His wings of love abide,
God will take care of you!
God will take care of you,
Through every day o’er all the way;
He will take care of you;
God will take care of you!
2
Through days of toil when heart doth fail,
God will take care of you!
When dangers fierce your path assail,
God will take care of you!
3
All you may need He will provide,
God will take care of you!
Trust Him, and you will be satisfied,
God will take care of you!
4
Lonely and sad, from friends apart,
God will take care of you!
He will give peace to your aching heart,
God will take care of you!
5
No matter what may be the test,
God will take care of you!
Lean, weary one, upon His breast,
God will take care of you!
Beautiful! Thank you!
Oh how I wish the doctors would be able to easily cure you! I’m still so so sorry you are going through this mysterious illness. I am adding you permanently to my prayer list, Rachel. If it wasn’t summer vacation time I would be all over your current postings and even extra tedious postings wouldn’t be hard to read coming from you. Just so you know, you’ve got a friend in me. (And yes, I realize I’m quoting a pretty famous song) ;) Much love!
Hi Rachel, I know I don’t comment hardly ever but I wanted to let you know that I appreciate you sharing and opening up this part of you. I love your writing and you make me laugh. This post makes me want to hug you, so I am sending you a hug because words fail me. I love hearing how our God reaches through all the hard and broken places and brings good and beautiful things from them. I love your pictures! Thank you for sharing them.
Love and prayers, Stephanie
Thank you! I really appreciate the encouragement.
It seems like I know so many people our age that are struggling with things like this. MS, Lupus, chronic fatigue…is it just that we’re getting older or is it the lifestyle/chemicals we have here in America?? It makes you wonder. I hope they are able to find a new medication for you with fewer side effects. If it helps, you still seem as witty and fun as ever in your posts. :) Praying for you.
I agree! I think in 20 years they’ll know what is wrong with all of us.
I comment once in a blue moon, but just wanted to to offer my support. I think you are amazing even through all of this! I know it is not much, but it is true! I will say a prayer for you.
Julie