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. 

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I want to hear from you!!! A call to all Lymies

I was thinking this evening as I made a post about having extra pain and inflammation today because my mast cells are high (Lyme complication). It made me think that anyone who saw me earlier today would be confused by this post because I functioned well at work today, and of course I “looked fine”.

As any Lymie knows many of us do look fine and can even speak and act fine despite pain, fatigue, brain fog and the other myriad of symptoms that might be plaguing us. If I had a dime for every time I could have whined and complained and didn’t….. 

that said,  I would like to do a post featuring the faces of chronic Lyme (that’s where you come in); For anyone who is comfortable to share a headshot and a short bio (how long you’ve been sick, your symptoms and how you function and maybe some negativity you have experienced from others). I will leave that up to your discretion. 

Since WordPress won’t let you share photos in comments you can share your photos and stories with me on my Facebook Lyme page: My Color Is Lyme. You can post in comments where I will. E sharing this blog post, or message me.

I am looking forward to your responses to help raise awareness and understanding. 💚

Health Update

As many of you know I have had some progress in health and have been winning little battles along the way, but some things persist: autoimmune disease (mast cell overactivation disorder, etc.), and all the symptoms that go with it: chronic inflammation and pain, flare ups and food intolerances, P.O.T.S., chronic fatigue, edema, neurological issues…..
My sister Holly and I are still digging away at getting to the bottom of why some things aren’t getting better. Holly has been having some pretty scary symptoms including brain inflammation, intermittent loss of vision, horrible fatigue and other symptoms. 

We have some excellent health care practitioners who are amazing and doing all they can, and treatments and meds continue to be expensive.
Yesterday there was a breakthrough; I saw one of my doctors to follow up on a test I had run a couple weeks ago; it actually went out of the country to a university that is doing some groundbreaking testing. Not only are they finding things labs in the US are not, but they are developing specific treatments to kill what they find. Apparently what I learned is that most labs here will only test for what is on the requisition, and nothing else, even if they find something they can’t identify it isn’t reported. So because they don’t do this kind of intricate testing in the US there is a doctor here in the states working with a doctor overseas at this university (who actually used to live here in Washington!). In any case several things showed up which are serious, but it’s good news because it would’ve gone undetected otherwise. I have an elevated white cell count, which is nothing new because that has shown up before, but what they did find is that I have some deep chronic parasitic infections one which attacks the gut lining and is deeply imbedded and is not treatable with normal antiparasitic’s, one that is attacking my liver and one my kidneys. 

So if untreated I could potentially be headed towards liver and kidney disease, and kidney disease is irreversible. Since the liver and kidneys have not been functioning properly all these years it makes sense that I can’t detox properly, process things properly, etc. 

As some of you may know because I brought it up in the past, I have been struggling with my liver and kidney function for many many years.

This help explains a lot of why all the autoimmune overreaction, the fatigue, swelling and other symptoms are not getting completely better even though the Lyme seems to be under control. (although Bartonella, a lyme co-infection did show up as still active). Getting treatment for the Lyme and coinfections has made huge difference, but there was still more to deal with. 

All the mast cell overactivation disorder and other autoimmune issues cannot get better until this is dealt with. 

Good news is that it is treatable with some specific medications they have developed at this university that does the testing. Bad news is it is $2,300 for the first round of 21 day treatment, and when I am done with that they have to retest and usually they have to do a second round of treatment at the same cost. (The test is also $788). 

And that is just me! I think our entire family needs to be tested (Holly already has and will be getting treatment too). The costs are big, but God is bigger.

I am asking God to do some miraculous things and we shall see how He provides. 
We could of course also use prayer in all of this, for healing and provision.

As a quick aside I could also use prayer that I don’t at any time have a stroke of blood clot as one effect of all this autoimmune activity is that my blood is thicker than it should be and puts me at risk of clot and stroke. I am on some things to counteract this but I’m still at risk. 

If anyone is able and feels led to aid in financial assistance we would be humbly blessed:

Lyme Fund page
And as always I am more than willing to work for finances so I will share my art page as well: Farfalla de la Luna Art Page

Living a half life

It’s 5am, I’ve been up since 2:30. Another night of insomnia where my mind and my body are betraying me again. My brain won’t shut down, and I’m having waves of heat, systemic irritation and an upset gut. My buddy edema which never leaves or forsakes me is also having a great party.  I have to get up at 7:30am for work and I am hitting a wall right now physically, mentally and emotionally. 

How do i keep going on? How much more of this can I take? And with this emotional crash comes all the old hurts and devastations, anger, garbage and the “lies” that are really true but just a matter of perspective (is my liver causing me this crisis?): I am such a waste of a human being. I’m a black hole in a world of people who have value. My health has cost about 100,000 and where am I now? Am I living and thriving? No. Do I believe the doctors that say they can help and keeping pouring money out while I still live a half life and feeling like crud, or would it be better just to stop everything and give up?

My body is angry. It likes being angry. It likes to punish me for every bite of food I eat. It likes revenge for any bit of fun I have or energy I expel…. The only difference is in degree. So I made myself soup tonight all healthy and diet friendly, save maybe for garlic. Is this the way it’s always going to be? A night of sleeplessness and misery for something stupid like eating a little garlic? 

Why won’t the fluid retention/autoimmune/pain/fatigue get better? Is it mast cell like we are exploring now? Is it lymph virus? Toxins? Liver? Kidney? Pancreas? Spleen? Leaky gut? Celiac? All of the above? Parasympathetic nervous system?….

I have been told all of the above, treated for all of the above and more (and we’re not even talking about the Lyme and coinfections anymore). 

What hurts right now is thinking about all the normal people who live “whole” lives and don’t know what it’s like to live with access to  pieces of yourself, to never be whole or wholly alive. On your good days skating by at 70%, having to choose between obligation and everything else that makes up life. Obligation always wins and then years of your life just pass by and you find yourself in the south side of your thirties and possibilities for the future keep narrowing with every passing year until they are a pinhole and the things you have never done and never experienced far outweigh what you have, and I’m not even talking about big bucket list stuff… I’m talking about life experiences most take for granted.

A tear just fell on my pillow. I know tomorrow is another day and I know realistically I will not be so negative when I’m not out of my mind with lack of sleep, grief and discomfort. It’s just tough as I am getting another wave of heat and agitation thinking about a full day of work on an empty battery…

Magic Beans

Jumping right back into work without rest after my trip plus having all my edema and systemic reactions has been terribly fatiguing. Here I am needing to be super strict with my diet again and needing to cleanse, restore and calm down histamine and mast cell stuff, and/or iGg, and yet fatigue at work has been so bad that 24oz matcha lattes, energy drinks and regular tea aren’t helping to peel my face off my desk.

Even though I’m iGg reactive to both coffee and chocolate I have again been relying on “magic beans” this week just to get me through. Alas riding the wake of wakefulness (ha ha) are swelling, tingling and pain 😦   I can also feel adrenal fatigue from being shot up with so much caffeine.

Hopefully I can get back on track soon and let the only magic beans in my life be the beanstock growing kind.

cacao and coffee

Puff And Circumstance

Today is my first day back to work after my dream vacation (first one in 16 years) to Disneyland (will do a Disneyland post soon). I had decided I was going to be really strict and careful with my diet and packed a ton of food, like organic chicken and cooked broccoli and yams. The first couple days I did pretty well, but then you know….Disneyland.

First, we did not get back to the hotel for meals like I thought we would and just ended up being in the park a lot and even the snack food I did bring was not entirely practical, and one can’t survive in 90+ degree weather on dried fruit, zucchini chips and baby food.

I ended up having my first Jamba juice, several times….. Because of messed up schedule and lack of sleep I ended up having coffee a few times. I must admit ice cream happened a couple times and for a big cheat I had a Monte Cristo in Cafe Orleans for my sister’s birthday dinner. On our last day I also had some food at In and Out Burger because I had never been there before.

It was SO hard to make food decisions because I was torn between wanting to be strict and good to my body and just wanting to let go a little and enjoy vacation. All in all after tallying 5 1/2 days I did about 70% good with diet.

Why make this post all about food do you ask? Well, because I think my body’s reaction right now has a lot to do with autoimmune reaction to food and not much to do with days of walking and fatigue.

Ouch:

foot2foot