Out of Brokenness, Reimagining Hope

I have been thinking a lot lately about hope, and I have come to believe that hope is essential to life. When you think about it most people hold onto hope on a daily basis, even if it’s not a conscious thought. You hope the weather will be good on the weekend, you hope the guy you met calls, you hope you get a raise at work, you hope traffic won’t be bad, you hope you get over this cold soon, you hope you lose ten pounds…. With hope we are constantly planting wishes in our immediate and distant future with the expectancy they will blossom.       

This is why with chronic illness the loss of hope is equal to that of the physical suffering; it’s an internal death. Pain can be pushed through if you have hope it will end. Isolation can be endured if you have hope of socializing again. We can endure much more than we can imagine if we have hope throughout; hope for healing, hope for a better future, hope for life as we wish it to someday become a reality…..      

When we construct our hopes and dreams they are built on a foundation of what we feel is possible. After all we do not tend to realistically hope for things that are not in the realm of possibility, I guess if we do we call them pipe dreams. But when long-term illness and passing years of suffering rob you of the possibilities that are still attainable for a “normal” person, how then do you dream? What does hope look like with the shifts in what is possible 

     Of course the first dream for anyone that has been sick for a long time is for health, and subsequently health is the gateway to everything else we want in life: relationships, activities, happiness, success, travel,  family…LIFE. And in my opinion there are few things as painful as when hope is squelched and snatched away from you.  

     Now chronic illness looks a little different for every individual. For myself I am immensely blessed that I have come a long way in my 6+ years of treatment since Lyme diagnosis and there has been a lot of improvement. But the struggles continue and I may continue to struggle with autoimmune and other conditions for the rest of my life. So as my “younger” years continue to diminish like a fading horizon line, I have had to construct how to rebuild hopes that are now built on a different foundation, a foundation of what is possible for me now.  

    I had an emotional reshaping of my hopes with my last downturn in health, and a lot of the hopes I had been holding onto for many years got torn down; these constructs were apart of my reality, part of the paradigm that made up my world. These things (that in my mind) were apart of what life had in store for me. The realization of loss was a sickening sucker punch of reality that knocked me down flat. I had been living in that place of rubble for several months, and I had to basically go through a grieving process and lay to rest my virtual hope chest. Coming back out of the dark it took a lot of questioning whether rebuilding the hope tower was worth it. Should I accept a state of apathy as my reality… live in the small little box that life has given me and never expect anything more? Or is apathy just another unhealthy coping mechanism that will ultimately rob me of even more life? Questions questions…. introspection.       

Rebuilding hope. 
 

     At the time I mused: “Of course rebuilding my hope tower will look very different than before and be much smaller, but right now I’m not sure what to build it with. Or should I? Is that my job or God’s? Would He approve of my giving up on hope because it hurts too much to hold on?” 

    I have never stopped believing that my future and hope is in God, that He has a reason and purpose in everything He allows in my life, but what His plans are (obviously) are vastly different from anything I ever envisioned. I am looking at leaving my thirties behind the last day of this year and this doesn’t quite seem real. In my mind I’m still somewhere in my late twenties, waiting for the all the things the normal progression of life will bring. In some ways life for the chronically ill is like a treadmill, running in place and never getting anywhere but expending energy all the same and there is no end to exhaustion.       
So friends, as I have said goodbye to children and family, to independence, to financial stability, to being able to stop working (that takes all my energy robbing
 me of having a life outside it), to success, to travel, to normalcy, and all the perks that come with those things…. (At least in my own ability to achieve them).
    
But I’m still here. The scorched earth of where my hope tower burned down became the fertile soil to plant new hope for the future, both immediate and distant. I do have seeds I’m watering, and they are founded in deeper things and maybe are not all about
 me. They are seeds of faith. Seeds of love. Seeds of family and friends. Seeds of gratitude. Seeds of empathy for others. Seeds of a commission to my chronic illness community.   I’m still here. 


Painting is titled “Hope Through Sorrow”, a piece I recently finished 

Being Real

I wanted to speak to all of you from the heart for a few minutes (besides a health and circumstances update). I know that my posts can be a little wordy, but if you can stick with me to the end I would really appreciate it. I have had some serious ups and downs recently, not just physically but emotionally, mentally and spiritually too, and that is something I am going to try and be raw and real about.
As you all know these health difficulties have been plaguing myself and my family for decades, but especially my sister and I. And with this recent setback (again) it is so easy to feel depressed, lonely and hopeless….
Today on this sunny Saturday I think of all of you out there, socializing, having fun, seeing friends, being outside, doing things…. living normally. And for me this morning my POTS is acting up and it is hard for me to even stand without feeling breathless and weak and having waves of heat. (More on POTS below). Another day of my life sacrificed to the Lyme gods as they accept my life as an offering one day at a time (please no one be offended by this little metaphor). 
So this is going to be another in a long line of weekends for me basically in bed resting. I have given about 2/3 of my adult life to this: go to work, go to bed, repeat. I’m back in that cycle where I have just enough strength to work my part time job….and not much else. I call these cycles many things, including Survival Mode and the Chronic Illness Coma. I feel isolated, forgotten, left out and lonely. I keep seeing the years of my life tick by and my life eroding away, with opportunities disappearing on a fading horizon. 

Try and picture for a moment if this was your life for years and years, and you found yourself in your late thirties having your youth behind you having never properly experienced it. You are alone. You’ve never had a significant other or even an opportunity to get one, and you watch most of your friends live there lives from a distance doing “normal” things that you have never experienced and are not normal for you.
I had a very bad weekend last week; besides having a scare and being in the ER on Saturday, I was also very depressed and the enemy saw an opportunity to open a wound. 
The mind can go down Dark rabbit holes so easily: This isn’t living. Alone. Single. Sick. Struggling. My brain and body betray me. Thinking about eventually having my parents die and (gulp) Shiloh in time, and being utterly alone and destitute with no one to be a support is not a fun thought. I also feel like I am such a financial burden and my parents would be so much better off and more secure if I just died. (That’s a major one Satan like to come at me with). 
Thank you to a couple friends who encouraged me last Sunday and reminded me who I am in Christ, and who just listened and let me be real with my feelings.

That said, I am peeking back out of that dark corner and God is reminding me that faith and Who He is for me and His power over my circumstances have nothing to do with my emotions or mindset or the infections in my body and brain that are effecting those things.

After all, faith is all about what we do not see, what we do not feel, and relying on He Who dwells outside the shallowness of those things. 
Why did I share all that? I don’t think it’s because I want pity. I want to be normal, I just want to live, I don’t want to be a person that needs pity! No, rather I just want to be heard and understood and I feel like when I drop off the face of the earth that I don’t do so to the people in my life as well, and I’m just forgotten. 

I do want to thank the couple people who do stay in contact with me, it means the world. Just a text, just a “hi”, nothing fancy, just knowing I’m not forgotten.
Why The Chronically Ill Post TMI

Thank you so much for reading this far.
As far as myself and my sister Holly as you know we are going through treatments right now to deal with some deep parasitic and other infections in our bodies that are not only gut related but are attacking our livers, kidneys and other organs too, and the treatment has been rough. I just did my retest lab work this last week to confirm what infections remain after phase 1 and how to approach my Phase 2 in this next round of treatment. I have had it confirmed that (among other things) I do still have Bartonella: What is Bartonella & its Symptoms?

 Babesia: What is Babesia & its Symptoms?

which are the two major Lyme coinfections. 

My POTS which is usually mild also goes to more of a moderate degree when I have a flare up, and that’s been difficult ( Lyme & POTS )
My sister and I could use prayer that these treatments work, and that maybe this will be the beginning to the end of this multi-decade battle.
Lyme (collective term for Borrelia, coinfections and complications) is so hard to treat because it can change form, hide from the immune system, be antibiotic resistant, cross the blood-brain barrier and infect any and all parts of the body, and treatments are basically going layer by layer, getting deep stuff to come to the surface, and repeating the process. 

A good metaphor would be weeding a garden: you pull weeds, you rototill, you use poison, you pull up roots and do your best with what you see. But you miss a few roots, you can’t always identify every weed, and the “poison” ruins the soil so you have to keep replenishing as you’re killing, and just when you think you got it all…. you find there’s stuff you missed that starts growing and taking over again.
Here is also a good link on why treatments make you feel worse: What is a Herx?

Wow guys, thanks for sticking with me and hearing me out! Even with all that writing it is still just a summary. 

Please also pray for God’s financial provision as for this season expenses have again skyrocketed into about 5,000 a month.

I have been unable to paint again, and that has been disheartening. If anyone has any clever ideas for fundraisers let me know! (It would have to be in the realm of my capacity). 

Steidl Family Lyme Fund
Jennifer’s Lyme Fund
Thank you again for taking the time to read all this. 

Fire

I didn’t think I would be going through this again, that feeling of being poisoned.all the tissues in my body feel like they’ve been lit on fire, I don’t know how else to describe it it is deep burning pain in the tissue especially my legs but also my arms and torso. I know the fluid in my body’s going crazy when my slip on shoes become really tight and I get lines around my ankles.  

 I have been having abdominal cramping off and  on the past few days and suddenly put on weight and the water retention is insane. What drives me crazy is I really have no idea why! The past two days I’ve been using the symptom tracker on my phone to try and correlate if there’s anything on eating that I could possibly be reacting to. 

I did find that I had been eating too many naturally sugary foods like dates some figs.

And the last couple days I have had some sweet potato that had smoky paprika on it, I am wondering if this could be the culprit being that paprika is a nightshade. But could that cause this systematic agony? Feeling like someone beat me up with a baseball bat and then rubbed me with sandpaper?

Ugh, so tired of this. The other thing that made me wonder is the fact that I’ve been using some avocado oil, plain raw avocado does cause me little bit of stomach distress, but I think I am having allergic reactions to coconut, so coconut oil is out. You can’t cook safely with olive oil, canola oil isnt good for you, I am allergic to sesame and nut  oils, and I can’t use potter because I am dairy free. I swear I just need to put into a medically induced coma and be on an IV drip for a good three months and not eat or drink anything to give my gut a  rest.

OK, rant over. Pain and misery hopefully short-lived.

How To Take A “Lyme” Bubble Bath

First let me start by saying I have always loved bubble paths. It is not only atmospheric and part of the whole bath experience but it is also rather comforting…..well, I’m just going to say it, not to have to look down at yourself the whole time you’re in the tub.
Okay, so now the challenges. As we know most bath and body products out there are full of bad stuff and most contain endotoxins at best (no time to get into all that here). But needless to say it’s not good for us and since 80% of our immune system is in our GI and anything we put on our skin bypasses our immune system and goes straight into our blood stream. Major problem for anyone but all the more for those of us suffering from Lyme and autoimmune diseases. Are we still talking about bubble baths you ask? Why yes we are and I am taking the long road to get to my point. All the commercial bubble bath stuff out there is full of sulfates, parabens, glycols and more. So I try and avoid them. Problem is I have also tried the all natural bubble bath stuff and found it to be quite wanting in the “abundance of bubbles” department. To add to this quandary I also like using some *essential oils in the bath water that would be beneficial to my health and Lyme, both in absorption and breathing them in, and oils kill bubbles…

But through trial and error I have found the perfect solution!
Because one day I had nothing else on hand I decided to try Mrs Meyers Clean Day soap in the bath and to my delight it creates great bubbles, every bit as good as bubble bath soap. But as for the oils messing with bubbles I discovered that it is a matter of timing. I start the bath by running the water and putting the Epsom salts and the soap in first right when I start running the water. Then I will get the tub about half full (at this time it should be full of generous bubbles) and put the drops of EOs under the running water. They will be in the water and under your bath bubbles leaving your suds in tact 👏

Bath RX:

2 Cups Epsom Salts
4 Generous pumps Mrs Meyers Clean Day (or other natural soap). Run water and stir at first to help dissolve salt, let suds form.
*Add several drops of preferred essential oil after bath is about half full.
Soak for 20-60 minutes.

Here are several good reads on Epsom Salts baths and essential oils for Lyme.

http://www.tiredoflyme.com/epsom-salt-bath.html#.VLHsniY76JJ

http://www.oil-testimonials.com/aromatherapy.php?t=1&x=924292&q=Lyme&submit=Search

http://www.lyme-treatment.com/2014/05/working-with-essential-oils.html?m=1

*please be careful and do your research before using essential oils topically. Some are “hot” oils and must be diluted before use and some can be skin irritants. Also realize that because oil and water don’t mix you will experience a concentration on the surface of the water.

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Biofilms. If you don’t know what they are you will never get better

I saw a post on Facebook today in a Lyme community, It was from someone that had just read something about biofilms and wondered if they existed. This is a terrifying question from a chronic Lyme sufferer because if they are not being treated for them they will never get better.

Here are some essential links with info on Lyme Biofilms:

http://www.treatlyme.net/articles/2011/12/2/biofilms-gated-communities.html

http://www.treatlyme.net/lyme-disease-supplement-blog/2011/10/31/banderol-and-samento.html

http://www.huffingtonpost.com/c-m-rubin/the-global-search-for-edu_b_3916360.html

http://www.lymediseaseneogen.com/lyme-disease-elimination-program/

http://www.tiredoflyme.com/biofilm.html#.UxApP4XKTIU

 

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