Don’t Miss Out On The Collateral Beauty 

I just watched a movie called Collateral Beauty; (you probably saw the trailer at Christmas time), a tale of a broken man and a call back to life from unexpected sources. Well not what I would call a great or life-changing film, I would say it was a good one, and it had some good life lessons that were given to us by “death”, “time”, and “love”.
One line in the film spoken by “love” to a hurting man who lost his child was “yes I was there in her smile, there in her laughter, there inside you in the happiness…..But what you need to know is that I am here also in your pain. I am in everything and the reason for everything. ”
I found this incredibly profound and in a sense very true; but instead of simple love as the world would understand it, I replace that with the person of Jesus Christ; Who in himself is the embodiment of love. “For God so loved the world that he gave his only son….”

He is the reason. He is the purpose. He is as relevant in our joy as He is in our suffering. He catches every tear and often we feel Him more closely in pain than in joy. 
In the blindness of our own humanity so often we fail to see Him working underneath the surface, but He is, even (especially) in our misery.

For He said He causes all things to work together for the good of those who are called according to his purpose. That is where our faith and our hope lies; nothing, I repeat nothing is wasted when we are in Christ. Quite the opposite. All things are redeemed for his glory and our good.

Sometimes we are lucky (blessed) enough to catch glimpses of Him working miraculously in the most difficult and tragic circumstances. When we get these glimpses of his hand at work sometimes we call it a miracle. But may I propose that this is the normal and not the extraordinary? Do we need to see with our eyes, or do we need to know what God is up to in order to believe that He is always, always working underneath the surface of all things at all times? For his ways are higher than our ways, his thoughts are higher than our thoughts. And in his omniscience He weaves webs with a million strands of intricacy with multi-faceted intentionality in every life circumstance. Not because of who we are, but because of Who He is.
So no matter what is happening, whether you see a purpose or not, whether you simply see the circumstance or maybe get a glimpse beneath the surface into the divine….. “just make sure you notice the collateral beauty”. 

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Love Is A Many Splendored Thing

I believe above all things in love;
Love that sets us free

Love that lets us fly

Love that empties us of ourselves 

Love that purifies

Love that conquers all

Love that gives hope in all things

Love that makes dreams possible

Love that builds bridges

Love that has no boundaries or borders

Love that binds together

Love that never lets go

Love that washes away pain

Love that cuts through the darkness like a knife

Love for which you would gladly sacrifice your life

Love that wipes away selfishness

Love that changes hearts and souls

Love that overcomes cruelty and hate

Love that erases the past like sand swept from the shore
I believe in the love of my Father; which will never be shaken, will never change and exists in abundant grace, unending towards me. I believe I cannot be plucked from His hand and He will never leave nor forsake me, no matter what happens or the thousand times I mess up.
I believe in the ultimate sacrifice of His Son; of love through death and unto life. I believe He lives in love to intercede for me and is my faithful Friend forever.
I believe in the love of the Body for each other; Even though we often get caught up in the world and act out of our flesh, squabble, let each other down….

I believe our love cannot ultimately be squelched and is always available to us for each other.
I believe in the love of family; I believe in the bonds of parents and children, brothers and sisters…. and even though many have brokenness and pain, love is always possible. 
I believe in romantic covenant love; and the closest bond that we can have on this earth for another human being. I believe that all obstacles can be overcome and all baggage left behind with the power of Christ, and that the dream of love can be a reality.
Pursue love first, forget the material things that so quickly pass away. 

Hope in love keeps us alive, sustains us when all else fails. Love still conquers all.

Let love lead and be the lens through which you see the world.
~JS

Another chapter in bathtub confessions 

  

Learning To Live Again

I spent some time reading your posts tonight. I must admit I avoid reading the the blogs of fellow Lyme sufferers most nights of the week because I have to be in the right mental state to do so. The reason is that you break my heart. A lot of times I cannot help but respond when moved; to encourage you, let you know I am praying for you and of course when appropriate, do my best to advise and share with you.

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I have walked this path and (although I find myself mostly better) I do continue to walk it with you. I have noticed that as my complaints and symptoms slowly ebb away I feel less and less compelled to post and share. However I been thinking over the last couple weeks that this may be a mistake. Does the story simply end when the physical pain is mostly gone? Is there nothing more to say when fatigue doesn’t knock you flat?

I think there is more to say at this stage in the illness journey than ever because I am no longer bound by the limitations of how I am physically feeling and the mental and emotional devastation that come from that place. First, before I go on I am thinking my experience is a bit different than a lot of the stories I read because there are so many very young and lovely ladies on here that are suffering greatly who are still very young. You are in high school or your very early twenties, and your life has come to a halt because of your illness. You may not be able to finish school or enjoy all the activities that your friends enjoy, but have hope! You are young and you have been diagnosed and (God wiling) are getting proper treatment and will have an amazing life ahead of you. I also read the stories of some equally lovely ladies that are older, are married and have children (many who have adult children), and you are having a very different experience where you also suffer the difficulty of feeling that you are not there for your families.

    Pardon me I am meandering a bit, but I guess what I am trying to say is that I relate to all of you in different ways, but I am not quite in the same place either. I am now 35 and single. I find myself to be in this strange in between place where I am no longer young and yet my life has certainly not followed the logical chronological order that should have transpired at this point. So I am kind of being “kicked out” of the chronically ill club and well, where do I go from here? This may be a strange analogy but I feel like Eliza Doolittle at the end of My Fair Lady when she sobs “What’s to become of me? what’s to become of me?”. You see Eliza has her whole life in front of her and her future has changed for the better but everything she was and made her “her” is gone. No more flower girl, no more peers who work in the same circle as herself, just a complete paradigm shift.

It sounds dumb I know but there is some fear in moving forward. Why? Because I am no longer in “survival mode” where life was all about just getting through the day…just making it through work…. just doing the bare minimum. Living in this mode is how I have spent most of the last decade of my life and now in a way has to be unlearned. I am having a shift back into life which I must say is wonderful! There are a thousand things I have always wanted to do that I can now (God willing) start doing. I am unexpectedly running into….dun dun dun dun….fear. But what if I still can’t? What if the reason things don’t happen for me in life can no longer be blamed on a disease but instead cannot be realized for other reasons? Hmmm… This is where faith comes in. This entire journey has been one long test of faith. The interesting thing is that you think of faith as being a simple thing, and in fact it is. But it is also something that we continually learn and grow in throughout our lives. The faith that got me through my hardest days physically and emotionally…through my toughest days, is at it’s base the very same that I need now, trust God. Pretty simple. That said I think it is more my reaction to that belief and the choices I make in regards to that belief that are different. God calls us to different courses of action throughout our lives and according to our circumstances. His gentle words to trust remain constant, but now I feel Him telling me that the time of apathy is over, now is the time to walk and leap instead of crawl.

     Now I must share with you that I am an all or nothing thinker. So I tend to put the pressure on myself that my entire future depends on every little step or decision, my entire life depends on what I do right now! As I am writing this I am finding peace in knowing that faith comes in the steps just as much as in the giant leaps. God is calling me to “trust” and “obey” (His go to words to me over the last several years). The responsibility on my part is to spend time with Him and rest in the fact that every step forward while walking in obedience is a step towards the future He has planned for me.

Deep sigh. Whatever happens it is all good. 🙂

 

Lyme Awareness Month Post 1.0 Feelings and Emotions

Lyme Awareness Month

 

Post 1.0 Feelings and Emotions

 

Lyme disease can be (dependant on your symptoms) what is called an invisible illness. Meaning that you can “look” fine while inwardly you are suffering pain, fatigue, weakness, brain haze and confusion, visual problems, “Lyme brain” (dyslexia, inhibited reading comprehension, cognitive issues, memory problems, inhibited name and word recollection), digestive disorders, edema, poor circulation, cellular oxygen starvation, reduced lung function….

   These are all symptoms that the people around really can’t see, and it is hard to explain sometimes to someone that you generally just don’t feel well. I think people are more understanding of people who are in cancer treatment and going through chemo, how horrible they can feel, their disabling fatigue and pain. Now please, do NOT think that I mean everyone with Lyme is going through what some cancer patients go through, I just mean that the general public know and understand cancer better.

 

I am going to run down some of my personal emotional experiences of being sick, before and after diagnosis. Since I have not experienced some of the very severe symptoms of Lyme I am not going to bring them up (Seizures, Palsy, MS symptoms, Alzheimer’s symptoms, ALS symptoms,….death).

 

ISOLATION:

 

It begins slowly, you are too tired on the weekend or after work so see your friends or do the activities you used to do. People who you used to see regularly don’t call as often and stop inviting you to activities, because they know you will just say no. After time you stop contacting other people, you lose interest in social activities, both because you don’t have the energy and because your brain hormones are now so out of balance you simply don’t care. A state of apathy takes over and your world is your illness. If you are able to work this requires 100% of whatever mental and physical energy you have just to function. At the end of the day you are tapped out, and you honestly don’t even have the desire to talk to anyone. For those around you it may seem like you don’t care anymore, you may be grumpy and irritable, and you don’t communicate like you used to. For you the “not caring” is true, not because you truly don’t care, but because fatigue has set into your brain and bones and you find you don’t have the ability to care.

 

DEPRESSION AND LOSS OF SELF:

 

Depression and physical/mental fatigue can be hard to separate sometimes, and honestly I do not always know where one ends and one begins, or at what point they are like paint colors mixed together, indistinguishable one from the other, but I will try.

   Depression comes on slowly, fueled by the physical pain and symptoms, encouraged by the isolation, and made prominent by losing yourself. By “losing yourself”  I mean I think back to who I was in the past, in those windows of time when I was fairly healthy; I loved photography, hiking, biking, yoga, writing, art, music, being creative, cooking and baking, and many other things. As illness takes over those things fall away, and then your interest in those things falls away, and then the very memory of those interests and desires falls away, and suddenly you really don’t remember what it feels like to be you. Nothing is interesting anymore, and even if it was it takes too much energy to pursue it. So when you spend what little energy you possess on just your responsibilities (job, laundry, doctor appointments) and nothing else, you go into survival mode, and life is about just getting by…..taking pills….breathing, you become a drone.

    It took me a while to realize that the lack of emotion that had become my reality was itself an emotion as well. Depression is often not always “feeling” down, but shutting down. I also went through a few months in my treatment where I literally was bed ridden most of the time, during that time I did reach a few rungs lower on the depression ladder. I thought of giving up, that life wasn’t worth it anymore, that things just kept getting worse not better. I am thankful that slowly, a few steps at a time that period did dissipate, both with high doses of vitamin B and just with time…getting past that rough patch in my treatment. But I need to say most of all God was speaking to me through all of it, and trying to reach me on a deeper level, and I had to actively reach back and be embraced.

 

ANGER:

 

  Anger (for me) has been strongly tied into the physical, but it is still a strong emotion I have experienced throughout all this. I have been angry at life for many years for cheating me out of my youth, for robbing me of experiences, for eating my flesh and my cells and my skin….experiencing physical time passing without reaping any of the benefits those years could have given me.

I even have to admit experiencing times when I was angry at God. I didn’t want to be, I knew He was good, that He had reason and a purpose, but when you are sick and “blind” all you know is your pain and disappointment, and anger. Thankfully I have talked it through with Him, and have been led back out. But it was not until I surrendered that God has started to open my eyes to some of the reasons I am on this journey. FYI, be very careful if you ever consider praying with an honest heart for faith and a strong testimony, you do not know what you are going to get.

   Like I said, anger for me can be unexpected and mostly physical, primarily tied to my liver. This might sound odd, but it is true, and Angry Liver isn’t just some random term. When my liver is “angry” (overly toxic, backed up, overwhelmed) the anger can be very mild, or I can feel like I want to punch, kick and swear for absolutely no reason, and then be miss sunshine again the next day. Thankfully I now recognize it when it happens, and have tuned in to the actual physical feeling that comes with it. There are different methods to helping your liver along, some of which are probably TMI for the emotion page, but I have learned to deal with.

 

SUMMARY:

 

So these are the base negative emotions that I have gone through, all in various degrees at different times. I am better than I was in 2012, but I still have a long way to go. Taking care of the emotional toll an invisible illness has on you is a multiple course of action process;

Time. Just getting through the time it takes with your Lyme treatment, letting the drugs run their course, getting past when they make you feel worse, making it through the worst of your die-off and Herx reactions.

 

Love. I am blessed to have people in my life that love and care for me, both friends and family. Surround yourself with the people that love you, that are willing to listen to what you are going through and want to try and understand.

 

Acceptance. This was the hardest part for me because I did not (still don’t) want my identity to be that of a sick person. But you do come to realize that is who you are anyway, whether you label it or not. This is the life you are living. There seems to be a process when you are diagnosed with an illness; Denial, shock, depression, acceptance, fight! Accept where you are in this process, move forward with optimism but accept where your body is now. This will free your expectations and your mind so you can get better. Be kind to yourself, even if you can’t do much spoil yourself with good music, beautiful pictures, whatever brings you even a spark of joy.

 

Community. It has been very encouraging and supportive to find others out there that are going through similar experiences. Through WordPress and Tumblr I have found others that can support me, and that I can encourage as well. As far as you are able, reach out.

 

God. You may or may not be at the place where you have a relationship with God, I hope you are. I cannot imagine going through what I have without knowing that I have a Father, a Protector, a Shield.  He is my Strength, my Hope, my Everything. I know “I have a future and a hope” in Him. I know that “All things work together for the good of those who love God and are called according to His purpose”. This journey has been tough, but knowing that it is being used for God’s purpose does give me peace and hope. He knew all this was going to happen, nothing is a surprise to Him, He gave me this set of circumstances because He deemed I could handle it, and submit to His will being done through it. I have been honored.Image