A “Good Day” To Be A Lymie

Today is a good day; it’s currently 12:10pm on a Saturday and it’s still my “morning”, being that I’m still convincing myself to get moving and I haven’t done much yet.

I am coming off of several weeks of an antiparasitic/antiviral treatment that was pretty hardcore, and it was phase 2 having completed phase 1 the month before last. I feel like it takes a while for my body to reset and rebuild after the onslaught.  I had a UVBI blood treatment on Monday and I’m still not sure what my reaction is being that I felt energized the day of and not so good the rest of the week. (I was told I could experience some die off).

I’m tired. Even though I’m done with that particular protocol I’m still on a TON of supplements, and as of a few days ago three new prescriptions. Still have to deal with Candida, hormones and other stuff. I’m tired.  But body pain today isn’t too bad, fluid retention (my pesky persistent minion) is at about a medium. All things considered today is a good day relative to how crappy I have been feeling. I might even try and go for a walk.

I am mentally troubled this “morning” as I contemplate where I’m at as far as treatment protocol and what the rest of the year holds as far as medical expenses and whatever the doctors will want to do next. 11,000 went on the credit card just the last 6 weeks for our family’s medical needs 😳

That said; I got confirmation from my main two doctors this week that the protocol to kill the viruses and parasites was very successful and I’m in good shape as far as that goes. Which leaves the remaining battle being the autoimmune disorder factor in this long-term disease, and that’s been a huge battle. 

Bottom line my body hates itself and I hate it. Not a happy cohabitation. So my Mast cells and histamine, cytokines and gut all need to decide to start getting along or my slow decline into self-destruction will someday be successful. 

That said I am hoping that the remaining months of this year will see big changes, that I will start to experience what “normal” feels like, and that next time I have a “good day” it won’t be in parenthesis because of relativity, but “good” will actually be good


Lyme Fund

The People Society Forgot

Have you noticed how insanely busy everyone is? And I do mean insanely!!! Life is non-stop running from this place to that, calendars are full, people have very little time to invest in each other anymore or cultivate relationships.

It is almost hard to remember days gone by (hey I’m getting old) before cell phones and social media when people actually talked to each other more. They had time for their friends, getting together to visit was simpler… it didn’t involve so much coordination and stress. Oh, and people cared for each other. Remember that? 

Now before I come off as bashing the character of everyone in our western society; I’m not sure who to blame, it just seems to be what happened to all of us, and most people are not unkind or unfeeling, it’s just that they’re so darn busy.

For the chronically ill that have fallen off the conveyer belt of this life that drives, drives, drives and never stops moving or let’s anyone take a breath…. we often feel forgotten. 

Now what’s great is that when you are not well enough to be uber social, cell phones and social media are a life saver, at least in some ways. You see we also have a window into the world that has forgotten us; people that goon hikes, hang with friends, go out to dinner, spend time with everyone but you because everyone else is up and mobile and, frankly more fun.

Ahhh the chronic illness suffer, we are like a low budget B movie that was made 20 years ago that most people forgot even existed, until someone says something like “hey wasn’t ‘_____’ like at that thing with that other person we went to way back when”?

Now you (normal person) may actually think of us from time to time, pray for us, have us run across your mind…. But guess what? We don’t know that!!!!!. 

Silence= I don’t matter and you don’t care. 

Again, I’m sure the person reading this is a good person, and a busy person, but maybe just as a favor to me, when “_____” comes to your mind and you haven’t seen them in a while and you know they are struggling, send a quick text, an IM, or maybe one of those old-fashioned phone call things. 

Please Imagine being too sick to do what you are out doing right now, and instead that you were home alone most of the time,  imagine (some) of your friends staying silent, for weeks, months…. 

Now Imagine now if they weren’t.

Thanks for listening readers 💚

No Wasted Days In The Kingdom

My dear friends a couple days ago I wrote a new blog post trying to explain what it was like on a day of struggle. I wrote it as an outlet on a bad day that (seemed) like a total waste and just another hole in my life; I had no idea how wrong I was…

Lately I have been exploring with the Lord what it really, truly, tangibly means to work out my faith and walk in faith when I (feel) that my life is in a stagnant state, not being able to do everything I want to do, not being able to be active in the way I want…

What I believe He has been teaching me is that this means that my posture before Him must be one of praise, worship and rejoicing no matter what I feel or what my eyes see. That working out my faith in these places is all about attitude, perspective and obedience.

Also I have found that He has been working on my worst days when I do choose to be obedient. It’s hard when you are alone in your room not feeling up to doing anything and you’re like “Lord, what does being obedient look like on a day of nothingness?”

On a few of these days He has called me to write and this has been more fruitful than me writing on days I feel better.

So back to His miracle of redemption on me writing about a day of waste and emptiness. 

I wrote the post I shared ( Confessions Of A Functioning Lymie) on what it’s like to live through one of those in between days where people don’t see you, where you don’t feel up to doing anything, and God used that post in ways I didn’t see coming. 

You see I’ve been blogging for about 3 1/2 years about my Lyme journey and it has been fruitful and God has definitely used it to reach and help others. I do get contacted personally from time to time by other Lyme sufferers both through my blog and Facebook page, sometimes asking for help and advice. This can be overwhelming at times and heart-wrenching at hearing the depth of suffering and being unable to help, especially when the people have no access to treatment or the ability to afford it.

Usually when I post something new I will get under a hundred hits on that given day, but of course visitors will continue to read it over the coming days, months and years… The biggest “explosion” I have ever gotten in my years of blogging on a single blog post was over 200 hits in one day and it was something! 

Weeeeell, much to my surprise my most recent post exploded like nothing I have ever had before; other Lyme bloggers and Lyme related pages re-blogged and re-posted and on its first day it got about 1,200 hits, 2,300 on its second day, and as of about 8pm Saturday the 18th it’s gotten just over 6,100 hits. This is beyond me and my ability to promote. 


Well boy oh boy is God teaching me about redemption. I am getting so many responses and personal messages that are touching me and breaking my heart, but showing me how God uses suffering. Here are a few:


Blog Comments

(Since these people’s comments are public when they post them I am hoping it is okay to include some here)

I am struggling terribly. I have been diagnosed and the drs office treated me until the ins stopped paying the huge mark ups on the seevices and no lyme in Texas theroy leaves me bewildered. No one will treat my Lyme and I have lost all hope. My finances are terrible and the drs lack basic knowledge and refuse any effort. The disease is winning and clearly my husband and my kids 5 teens and 1 yr old grand baby deserve better…”.   ~Sara
Thank you for writing this. You just described my life verbatim. Although I do not enjoy hearing of another’s suffering, it is nice to know that I am not alone, and that someone else knows and understands what I am going through. God bless and speed you in your recovery, may your good days outnumber the bad ones and continue to multiply!”   ~Cheryl

“Is there a way to subscribe to your blog? I am not seeing it. I just read your BIO and it sounds just like me so I’d love to see your new posts as they come. Thanks.”        ~Traci

Thank you for writing this……I feel like I could of wrote this myself as this is exactly how my life is on a daily basis down to the exact meds and trying to plan out when to take them. Glad I’m not crazy and the only one that experiences these specific things. I wish you all the best and hope the good days start to out weigh the bad.”       ~Brenda

Wow. I’m at a stage where I don’t talk about my symptoms anymore because even I’m bored of hearing it and I’m also embarrassed every time I see that “oh, here we go again!” look on someone’s face if I dare to mention that my legs hurt or I’m exhausted (the usual response is “but you haven’t done anything!”). This is the first time I have read the experiences of others and it is so good to know that I’m not a mad, paranoid, hypochondriac but a normal person living with a disease that the medical profession will not accept or treat. “.          ~Julie


me exactly as well. it’s been going on (and off and on and off and on) for 21 years. danced (clean) for a solid 4 hours about two weeks ago, and paid for it a few days later and currently still in recovery mode. my first appointment with a lyme-literate professional is tomorrow. THANK YOU FOR THIS. ~Gwupara

Thank you so much for writing and sharing this! It’s as is if I was ready my life! You are right, only Lymies will understand and that’s what I try to remind myself when I feel judged. They are not walking in my shoes so it’s not fair for me to judge others either. Praying for strength and health for us all!”   ~Karen

“Hooked up to my IV antibiotic as I read your post! Late stage Lyme that is attacking the Neuro stem of my brain. Ms/stroke like flares that occur about every 5 weeks lasting 7-10 days. Right sided paralysis, left sided severe migraine, cognitive impairment, visual distortion, aphasia and slurred speech, all over painful muscle spasms with continual involuntary twitching. The body becomes possessed and there is nothing to be done about it until the flare runs its course.             You then have 3 or so weeks to recover, get back on your feet and try to regain some strength, just in time to do it all over again!     A total nightmarish hell that began out of the blue 3 years ago slowly killing me a bit more with each day that passes.                                       I get up, dress up, makeup, and show up usually with a smile! Must not quit, must continue to perservire. What’s the alternative! Got two small kids, can’t work, going bankrupt due to Medical bills and tests not being covered. The list goes on and on with no explanations, rationalizations or solutions. Just prayers, prayers and more prayers, to understand, to cope, to live”.        ~Sheryl

Thanks you so much for this. It made me cry but also gave me a chance to post it to my friends to see if they can understand me. I am on a downward spiral and I can’t seem to stop it. I am in a wheelchair but I keep working 3 days a week. You could of written this for me. Thanks heaps and I hope that your struggle is less. xxxxx”.  ~M.I.

“I’m so sorry. You have just described my life exactly. I was in medical management and had to stop because of what you described. I walked in everyday after work and got in bed and stayed there. Now, my disability insurance is denying my claim…..”    ~Kathy

The other amazing thing is what was happening last Monday night the 13th; despite not feeling well and having worked all day, I went to a gathering of six ladies Monday night. One of the things we did as a group was each of us prayed and had an activity of writing down prophetic words for each other. It was amazing as they were read around the room because of the continuity of what was received from the Spirit for each woman and each had so much personal meaning.

For me, sitting there, not feeling well and not being as “present” as I would have liked I received words from three out of the five women about hearts; having a ministry to other people’s hearts/that people would come to me for healing not of their bodies but for their hearts/that people would come to me because I would understand/that God has entrusted me with a heart ministry…(!!!)

Wow, none of these ladies knew what was going on in the online world that day and that people were indeed flocking to my post and messaging me.

I was so touched by God and His redemption and that He was using me on a day I felt empty and unusable. It really teaches me on a deep level truths I already knew; everything God says about suffering. 
Suffering has been talked about so much at my home church and we have all suffered, none of us has been untouched by it. I know I have shared that God as our Redeemer and His redemptive power has become so personal to me and that not only can we believe that He can use our suffering for our good, His glory, a testimony, a ministry, to comfort others with the comfort we have received, our refinement, growth in faith…. But that we can with TENACITY chase down these things in the very midst of suffering as our blood-bought right in Christ! We needn’t sit back and think that during the trial is just a misery to get to the blessing at the end, and have promises at the end of suffering, no, ours in Christ is having those promises in the midst of suffering; a promise and purpose in every pain. Nothing ever wasted, ever. 

I was also very blessed yesterday to get in on an appointment five days sooner than what was scheduled with my doctor in Anacortes. The pain, swelling and fatigue had really upped their anti the last several weeks (I still believe it’s die off from my treatment of half a dozen little buggers). I had really taken a dive and have been sleeping like 12 hours a day with naps in between on days I’m not working. He said that my autoimmune reactivity was indeed very bad and he could tell my body was in crisis mode.

Thankfully he did necessary adjustments and hopefully the fire will calm down. Pain and swelling still bad bad bad today, but I feel clearer and have a better sense of well being.

Onward and upward. 💚 #deathtocoinfections 👊🏻
To sum it up though I have been given yet another shot of hope, not so much in my body as in my spirit, and I know that there are facets to this journey I have not even begun to understand as far as what God is doing. But I know He is working mightily. 

Do you live in Washington? Would you like someone to pay you for being sick? It’s possible….

Those of us with chronic illness know all too well the financial strain of chronic illness; not only is it MASSIVELY expensive to treat but most of us either can’t work full time or can’t work at all.

That’s why I wanted to share a little discovery that may not make a big dent in your income, but everything helps.

If you live in Washington there is a unique lab in Everett (one of only two in the country) that supplies unique plasma for research and testing (NOT human donation). They have a criteria they look for and want people with severe food and seasonal allergies, but also autoimmune diseases and….Lyme!

Payment is dependent on which catagory you fit into and what their clients are looking for at the time. But generally you might receive $185-$200 for a donation. And once you are in their database you can donate again and again.

Let me share my experience on the process and how it feels:

Initially you come in and fill out paperwork, and bringing any past blood work you may have had is helpful. They take an initial blood draw to be tested to see if you qualify for their program. Several weeks later they will let you know and then you can schedule your donation.

For me I had to wait longer because my ND was not initially happy with my ferritin levels and wanted them to be built up. So several months later I made my appointment. It takes about 2 hours including paperwork and testing the day of your donation. They do an intitial finger prick to check some levels and how you are doing that day (surprisingly it didn’t hurt), they want to make sure they won’t be harming you by taking plasma. They also do a urine sample to test (I believe) protein levels and a few other things. If these look good you can begin your donation!

For those of us that get regular IV’s the needle is no more uncomfortable than this. You are hooked up to a machine for approximately 45 minutes. It cycles back and forth drawing out blood, extracting plasma, and putting your red cells back. This is great because with regaining your red blood cells you don’t feel faint or weak like you would giving blood. During the process you are in a comfortable lounge chair with a heating pad and blanket if you want it. The nurse was extremely nice and chatty and told me that some of their donations travel all over the world for research.

When you’re done they give you a payment slip and send a check in the mail.

So, the process really isn’t too bad. I would recommend anyone with a chronic illness (or severe allergies) look into this to make some money and maybe make a difference at the same time.

If you do, PLEASE mention Jennifer Steidl sent you because the other best part is that once you are a donor they also pay you for referrals. So in that way we can help each other through these meager seasons. 

http://www.plasmalab.com

Also I have included location information in the photo 🙂


Lyme Robs, Lost Something Else To The Fight Today

My dear friends, I need you right now more than ever. I got let go from my job today which was a little unexpected and is very saddening. In a nutshell I simply wasn’t able to do the job I needed to do working two days a week. Also my cognitive state and health dip of the last few months have been affecting my job performance and decision-making a lot more than I knew. 
 Right now I am trusting God that this happened for a reason, and that he has something new and different for me. I am trying not to feel guilt and condemnation over being a failure. 

Lyme Care Fund
 I need your prayers and support about how and what to do to support myself, I don’t know if I can trust my own mind and my own energy to be able to do my best for a new employer, but I will be looking.

 If anyone is able to offer financial support, even a little, it will make the world of difference.

The Cold Shoulder Of The Body Of Christ

Having recently had fresh conversations with others with long-term invisible illness I thought I would post this most excellent article again.What is completely disappointing and devastating beyond just the illness is the hurt you can experience from the friends and family that either don’t care, or treat you as an annoyance, or possibly even think you are lying or just whining. They ignore you, belittle what you are going through, or pretend it doesn’t exist. What is a common experience of those who suffer long-term illness is that people don’t understand why you don’t get better, why this never ends. That’s when the accusations come that you just want attention or its all in your head. I have heard this from literally every single Lyme/invisible illness sufferer I have ever been in contact with. 
This is even more devastating because from my personal experience this also comes from the Body of Christ. 

(****Before going on I will write a quick disclaimer that I/we do have some wonderful caring Christian friends that DO walk out their faith and are genuine in love and taking action. There ARE amazing Christians and churches out there that are living for Christ).
These are the same Christians who do their daily Bible studies and attend church regularly. They talk about returning to what the church should be, which if you study the early church and what Jesus commanded (and put into practice Himself) it was about coming alongside each other, being “real” in each other’s lives. Coming alongside the hurting, the sick, the destitute… They did not have church programs, festivals, worship bands and entertainment. It was not all about bake sales, the new women’s devotional, “Christian” scrapbooking or just doing the “fun” part of Christianity. It was following Christ, sharing the Gospel, actually loving your neighbor as yourself and living sacrificially. 

No they weren’t perfect, the early church was messy. And no there is nothing wrong with programs and fun stuff. But when a church and individuals focus on those things and spend all their money and time on those things and blatantly deny or ignore those in real need, there is something seriously wrong. We have lost our love whether we think we have or not. 

It breaks my heart when I hear that my father (who is an attendee of a large church and even a teacher there) reaches out in prayer request saying he can hardly bear what he is going through anymore and receives no response from anyone. that devastates me. Also when mega churches also tell you that they refuse to help your situation because they want to keep a non-profit status, and that its your responsibility to get help from friends, they have just tipped their hand and told the Body that “we are no longer the Body Of Christ, we’re a business”.

That’s it folks, churches are now businesses operating in a corporate world. They don’t necessarily provide support, they don’t necessarily have people even to come alongside and pray and help. We focus on programs and ignore people.

God is not dead but I am afraid a lot of His people may be. 
This is something that I have been contemplating for years; the void, the hole in the church, and apparently the church has taught it’s people well because I don’t think a lot of Christians are even aware that just saying a quick “I’ll pray for you”, and then walking away and not giving it a second thought isn’t (or shouldn’t be) normal. At least not normal being in Christ. Churches in persecuted countries are completely different. 
Returning to personal experience I am grateful that I have experienced the cold shoulder from some friends and family and the Body; because it has revealed my ministry to me and what I want to do to help others, and what I do now in my limited capacity with fellow Lyme sufferers. 

May God someday grant me better abilities and resources to help fill the gap in the church and minister specifically to the sick and suffering, the ones that most people ignore or don’t understand.

Do I fail people? Yes. 

Am I perfect? So far from it it sickens me. Have I come off as cold, uncaring, listless, not present, selfish, unsocial…..? All the time! And I feel guilt about it everyday. Not until you experience the personality changes that spirochetes and other bugs can cause would this make sense. 

But I also recognize that I get glimpses of who I really am in times I am doing better and I am a better worshipper, better friend and a better support to my fellow I.I. Community. Once and a while a person who is newly suffering from something will tell me how much new appreciation they have for chronic illness. Would that everyone came to that understanding without having to suffer themselves. 
Quotes from this article: 

“One of the most difficult things about being chronically ill is that nearly everyone finds what you are going through incomprehensible. Healthy people, as you quickly become aware, have the luxury of forgetting that our existence depends on a cascade of precise cellular interactions. Not you. When it is you, in your loneliness, in your forced preoccupation with enduring your new reality, you ache to be understood in a way that you can’t be.”
“Regardless of the duration of your illness, survival depends on learning to build something new from your different reality. If life is a canvas then chronic illness only gives you one color to paint with. ”

  
 An Essay On Chronic Illness