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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Health and Needs Update

It has been a little while since I have updated this site. It has been a really rough couple months and I have been pretty down physically. It is really hard to describe what it feels like when things get bad like I’ve been experiencing, because it’s not as simple as “I don’t feel well”; my sense of reality gets really screwed and I don’t feel myself at all. A lot of what makes me “me” sort of falls away. I think it might be brain inflammation because I know that I get brain inflammation when the rest of my body is inflamed. I have been doing my best to fight through it, but it’s been rough.

The great news is I have felt a shift in my body for the better the last several days. This is another thing I can’t quite describe because it’s nothing I’m doing differently, it’s just a shift that feels as if someone has been pinning you against the ground and then finally lets you up. 
The main reason I started this page (Youcaring)  is because I’ve been struggling financially due to being unable to work full time and having expenses and bills that are beyond me. I still have a lot of needs, but I am hopeful that I will be able to start doing more soon. 

You caring link
#lyme #therapydog #youcaring #gofundme

End Of Another Year

I am trying to decide the feel and flavor of what to write. I am writing this now on my phone in a sun-filled medical facility with an IV in my right arm.Being that it is the day before the last day of the year I suppose sort of an overview of this year might be good, including praises and difficulties and dusty moldy dreams for he future.

Job and Income.

This last year of 2015 has been an equal mix of blessing and difficulty with being able to go part-time in January at my last job. It was a huge blessing because physically I just couldn’t take the schedule anymore and it felt like being caught in a riptide with constantly expelling energy with no rest. My social life suffered greatly in the last decade with me putting 100% of myself into just working and getting by and having nothing left for anything or anyone. This just wasn’t living.

So I have been immensely blessed to have had a year of restored balance, one that had become foreign to me. However along with that my financial situation deteriorated and I have gotten into a difficult place.

    Interestingly enough losing my job in November was also a huge blessing because of things go on in my work situation that added a lot of stress. Also the super early mornings were draining.  I can’t quite put it into words, but I feel like this event kick started me into another level of faith in God and being stripped of income brought me to a place where I felt “naked” before God, sort of pure, where it was just me and Him and it was something beautiful. He also used others to help me through this time financially as well and I haven’t been without despite the fact that I have had no paycheck since November.  

I am also awestruck how He brought me another job with a kind caring employer, the exact hours I need and a good environment. He aligned everything and all I had to do was trust.  The only thing is I am going from a year of financial difficulty into a new year that will be more meager as I am making significantly less hourly than I was at my last job. I don’t know how I will make it but I guess we never do.  Sometimes I just want to tell God “I have enough faith! No more please. Just stop with the faith already!” 😒

Health. 

Also this year saw some huge ups and downs health-wise; I started the year not doing well and being brought down with a viral co-infection in my heart. I reached some really good points earlier in the year and was feeling pretty good, But then along came progesterone that put me (literally) on the floor with fatigue and I felt like I regressed a couple years with my health. Climbing back out of that took months, thankfully just in time for Disneyland (more on that in a minute). After the trip I dipped again for a bit starting a new biofilm protocol and mycoplasma blasters.

The last couple weeks I am feeling myself climb out again and I am really believing that I will be having some pretty fantastic days ahead. Anyone that knows our family knows medical expenses have been insane with all four of us in treatment. It has been about 300,000 so far, and monthly medical costs of prescriptions, supplements and treatments is far above and beyond our incomes. So we pray that this tapers off and God will provide.
Hopes and Dreams.

For some reason it is really hard to even say or type those two words sometimes; hopes and dreams. These last few days have also been terribly difficult emotionally; it is the time of year when you reflect on the fact that it is another year over, and you think about the hopes and dreams of the coming year. It can be very painful to come to this time every year and the hopes and dreams are always the same, forever elusive, dwelling in a seemingly unattainable future.

My dreams are I guess quite pedestrian and simple according to some, but for me they seem as grand as climbing Mount Everest. 

I just read a great blog post about speaking our dreams out loud and acknowledging them, and how scary that can be, but how good it is for your soul. So what are my big dreams? I want to be married and have a family and care for them, have my etsy business, be available to others for ministry, maybe write a book someday. I dream of having enough money and resources to help others with chronic illness get treatment and be ministered to.

Those are my big scary dreams. I guess with every year that goes by my dreams grow more mythic and seem less and less like they belong in the realm of my reality. 

And now folks for the best two words in the English language put in the correct order to instill hope in our hearts; “But God…..”

I have witnessed in my life and the lives of others what God can do unexpectedly and (mostly) when we just stop worrying, start trusting and walk in obedience no matter what.
Blessings.

God did bring a dream to fruition this summer when my sister and I got to go to Disneyland, something we had been talking about for years. It was through the kindness and great generosity of others that it was possible. 

I am also so blessed by the friends that God has brought into my life. More than just acquaintances I have people in my life that walk with me and I with them in genuine love. I was telling my one friend that the people I am closest to in my life have been very easy instantaneous friendships; in that upon meeting each of them for the first time it was like we had known each other always. It is like certain people can just be on your wavelength and you “get them” and they get you. One thing about this is that I have only experienced this within the Body Of Christ; it is beyond just friends but true brothers and sisters. 
So my dear friends this is but only a short glimpse into the last year and I am sure I am forgetting many things. 

But in short God is faithful always, even if it is not how we expect in our limited views. Please join me in prayer over this coming year that I may see more needs met, have more abundant joy, maybe even see fulfillment of some dreams and not be afraid to dream them.

~Jennifer 

  

On This Thanksgiving Eve

On this Thanksgiving Eve I find myself in more need than I was in even a couple days ago;test results that say I have a longer treatment protocol ahead, loss of a job that turned a small income into zero….

but that said, I find myself full of thanksgiving and gratefulness. 

I have the love and support of God-given friends that are blessing me in words, prayers and deeds. I am being exhorted and reminded where my treasures lie.

I am in a very sweet place with the Lord where things have been stripped away and I am left to see who I am in Him, the inward growth that I have attained, and in surrender and making myself available for whatever tasks He has for me to compete I have such peace.

I also recognize the sovereignty of El Elyon and that nothing happens outside of His plan and purpose. There is such peace in this! I am at the best place I can be by humbling myself and being available for what He has next.

a very Happy Thanksgiving
My Lyme Fund

A Very Happy Meh Day!

A very happy Meh Day!a good friend and fellow Lymie just asked how I would rate my day today. In the world of chronic illness this is a common practice to rate your sub-perfect day with 10 being the unattainable healthy and whole. This means for a Lymie achieving say an “8” is the equivalent to being Maria singing on the mountain top, because in contrast getting an 8 or even a 7 can feel pretty amazing when you dwell in the land south of 6 most of the time.

i told her maybe 4, and maybe in a few hours 5 could be possible. Pain today is not too bad but still there. Swelling/water retention is insane today, and I must make a special mental note to avoid any members of the Makah tribe. 

I slept in until 11:45 today which is a bit unusual but much needed. Pain that has you crying out to Jesus for hours completely wipes you out, and that is how I began my day yesterday. I had my very uncomfortable ultrasound at Evergreen last night so I am hoping for some answers to at least this little piece of the health puzzle.

i am so blessed by my doctor who is walking me through everything comprehensively and saw me right away yesterday when I was in crisis. The big bonus was to get a hug and some prayer. 

So today I choose to believe I WILL work my way off the 4 spot and maybe even play some hopscotch over to 6. Don’t stop believin’ 

Need a little help from my friends
  

Your Cell Phone Might Be Killing You…

A shout out to Laurie who messaged me after reading my blog and sent me a link to this video. I have read some papers by Klinghardt before and knew how he felt about Electromagnetic field (EMF) exposure and the correlation to Lyme. But as this video suggests not only do Lyme bacteria thrive on EMFs, but so does mold. So if you’re suffering from biotoxic illness reducing your exposure to EMFs is also a must.

http://www.ihealthtube.com/aspx/viewvideo.aspx?v=2829ee3a75d313fa

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Just ‘Cause You’re Sick Doesn’t Mean You Can’t…..

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Yes you are in bed most of the time. Yes you feel like that possum that got hit by the truck. Yes you are kind of stuck and down in the dumps. You can’t do most of the things you want to do, so it is easy to get depressed, feel worthless and a burden on society. We’ve all been there, no matter what point in our illness we are in right now.

So since it is so easy to focus on the “can’ts” (which lead to feeling worthless), here are some “can’s” you can do right from your bed. And please don’t put these ideas down as cheesy, maybe some are but it’s the little things that sometimes make the day brighter.

 

Image1. Write Thank You Cards “just because”. Are there people in your life that you love and appreciate? How good would it feel to surprise them with a random thank you. Don’t be afraid to fill it full of detail about everything you love about them. And don’t be afraid of the digital Thank You! Are cards a little passe for you? Or maybe you can’t even get to the post office? Send a Facebook message or tribute post praising your friends and family for how fabulous they are.

 

Image2. Movies! Make it through the AFI top 100 Films list….or Best Musicals…or whatever list you choose. Okay I admit to growing up watching a lot of movies, but it is something I really enjoy and I appreciate the old ones as well as the new. Sick in bed might be the perfect time to be able to say  to someone “Why yes I have seen every film starring the great Cary Grant. Who of course was born as Archibald Leach in England and was a circus performer.” (yes, bedridden=time) There is no shame in being a film aficionado! (and may I add that binge watching television series is a lot of fun as well). Make a check list and tick it off as you go, at least you will feel accomplished 😉

 

Okay, these next 2 might be tough for those suffering cognitive issues (I went through years of struggling with reading)

Image3. Catch up on the Classics. Pride And Prejudice, Moby Dick, Tom Sawyer…….. there is a ton of classic literature out there that most of us haven’t read. Sick in bed is the perfect time! Now like I said I went through years of having trouble reading, When I tried I would re-read the same sentence or paragraph over and over and just not be able to take it in. Plus I had Lyme-induced dyslexia and Lyme-induced reduced visual acuity. So what I found (that I still love) are audio books. Especially now with smart phones this makes audio books very accessible. Audible (an Amazon company) has basically saved my life!

 

Image4. Discover art. Whether you are artistic or not everyone can enjoy sketching or drawing. Get some good art paper and some nice pencils, or even water colors or pastels. You might awaken the artist in you.

 

Image5. Scrapbook. Get colored paper, stickers, fancy scissors, glue sticks…. have fun.

 

Image6. Photography. Subject matter is of course limited in your bedroom, but if you are able to take short walks or sit in the back yard just play around taking photos. Try different angles and lighting…. lie on the ground and look up, walk a few steps and look down…you will be surprised at the hidden treasures all around. Play around with your photos editing on your phone or computer. The possibilities are endless.

 

Image7. Get some fish. Fish are easy no-brainer pets. If you don’t want to mess with filters and taking on too much work, get a Betta fish, just make sure the tank isn’t too small. Fishy likes space too after all. Fish are therapeutic to watch and it is nice having something to care for.

 

Image8. Learn. If your poor diseased brain is up to it find subjects of interest and learn about them online. The information out there is limitless.

 

All these ideas are just a starting point. I think just making a list that fits the parameters of where your health is that you can check off will give you a sense of accomplishment. Whatever you decide to do take the step and do it, you deserve it.