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. 

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6 thoughts on “Being Real

  1. I hear you, beautiful fellow sister in Christ. The impact of this sickness is not fair, especially especially socially and even worse when it comes to being isolated from Christian community because you’re too sick to engage. I’ve experienced my most social week in years, and it included two days just me at home in bed. I’m mid-twenties and this one social week of mine is a relatively normal one for my friends. I was having an honest conversation about this with God and said IT’S NOT FAIR. And I feel more peace having expressed this truth. Our world is fallen. Our bodies are broken. Some get a better earthly “lot” than others. But when all is scraped away (often not by choice!), God is all we have. If there is anything “good” about this suffering, perhaps it’s this very desperation that God is all we have and faith (as you mentioned) that He’s all we need.

    Jennifer, my heart goes out to you and it’s right beside you. I get it. I hear you and understand as much as I am able to. You AMAZE me with this blog. You are an incredibly gifted writer and such a loving soul! You’re basically a celebrity in my eyes. Be encouraged and know you’ve got people who love you and care about you and get it. Man, you’re just so incredible.

    Keeping you in my prayers tonight ❤

    • Thank you so much Barbara, and I completely agree with the purpose of suffering; I have to keep perspective of the gold that is being refined inwardly as my outer man is decaying.
      I did a blog post a while back about healing and God’s will. Even when I’m feeling down in spirit I still believe every word of that revelation in his purposefulness.

  2. I read all your posts, they are not as any other posts I read, I always think of them, think of your, I am always tempted to write, because I do understand too clearly what you are writing about. But after a lot of inner dialogue I never write, because I think it might be considered insensitive and even condescending. I am much older than you, I am 63 now. I had relatively minor health issues since my university years, had as I know it now, completely unrecognised and untreated Lyme infection, the European one, in 1984, which was not too bad to change my life dramatically. I had my health problems, but was fully functional. My health deteriorated in major way when I was still living in my typical overdrive mode with very limited reserves. It happened when I was just over forty. I understand what you call surviving mode. For me it often meant to sleep at least 3-4 hours on the second night, after the sleepless one, to be able to eat at least something, and be ready to go through some chores during the day. I was fortunate not to have money troubles on my shoulders, it was on my husband. But all other pressures of ordinary family life were always there. Being sick, having no strength and accepting that all the activities you love and enjoy had to be given up one by one took a long time. No bike rides – it was very bad for my back, no Tai-Chi – because I could not survive this very mild physical activity and working at Uni even one day a week, later, no lecturing at Uni – too much time to conserve the energy before the event and too much time for the recovery, after that, swimming pool has to go, as well. Nowadays I am not even up for a daily walk on regular basis. I pay for everything I do. So I have to calculate with military precision any physical and even intellectual activity, including talking, and decide which one is worth paying the price. The hardest price – recovery in bed, in peace and quiet, without reading and any noises.
    It took some time to accept mentally that my body lives by its own rules and not to fight it. But what I am truly grateful for is that my circumstances taught me to cut off all not really significant stuff, and social life with all the flurry of activities is in this basket. Many people of my age come to this conclusion anyway, but I did it only under pressure of limited energy I could spare. This saved me so much time, which would be just wasted, because you remember very little of it and it usually means very little.
    Another experience in my life contributed to this realisation as well. We immigrated to Australia from very busy working and even more busy social life. Practically nothing of these social connections survived. Nothing bad or unpleasant, just life happening, but it showed that the majority of social interactions, even that seems as close ones, are not genuine and essential in their essence. I hope that I did not upset or disrespect you in any way, and we are all obviously different, but in my mind you are missing something of not particularly great value. We are in our minds all alone with our thoughts and emotions, and deal with problems of survival essentially on our own.
    Ordinary, regular life can’t be even compared to that of people who suffer. We know more, we feel more, we think more. Having a miracle of opportunity to go back and avoid all I have been through, I would never take it. With all limitations of my life, with everything I lost in the process, I am the happiest I have ever been.
    Please never disregard who you are as a person, and don’t think for a minute that because of your life you are somehow less than other people. It is simply not true.

    • Wow Irene! Thank you so much for taking the time to write such a thorough and lovely response.
      You and you didn’t really write, it is a shame because you have things of value to say.
      That said, sharing personal thoughts and feelings whether they are good or ugly can be very scary, and very much an indivisible decision.
      Thank you for your words about decisions and value. I agree.
      I am thankful that even though I experience these valleys from time to time I am always lifted back out to fight and have hope again.

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