So What DOES Happen When A Person With Autoimmune Intolerences Cheats?

So because this is highly subjective and everyone’s body is different, I can only share what I go through when I “cheat” on my diet. 

Last night myself, my sister and our “brother” Dave visited my grandpa who is a recent widower and also just had back surgery. We had a wonderful very long visit, and ended up ordering dinner in the way of pizza. Now my sister and I had to find an alternative dinner source because of our food restrictions, but…..pizza! Besides our other food last night we both ended up picking off and eating some toppings off of a slice (dairy, processed meats, tomatoe, sulphates….). (I do draw the line even in little cheats at grains or gluten, that would put me under for weeks.)

Now baby cheats happen all the time, simply because my food restrictions are caaaraaazy! (See below). So having low reaction items sneak into my diet in the way of a little seasoning, or a little taste, happens all the time. And I beat myself up over this! because I always wonder “if I was 100% good all the time would this autoimmune stuff get better”?

I should clarify that on the iGg there are low reaction items and high reaction items, the “medium” one I struggle with on a daily basis is chocolate. (Hallelujah I was able to get off coffee, which makes me horribly sick). 

Okay, Back to what happens after pizza stripping: I woke up in th middle of the night feeling hot and restless, I went back to sleep but woke up several more times feeling agitated and with a growing headache that ended up being a pounding that encompassed my head and went down my spine. This morning my usual twenty pounds of fluid retention and inflammation had kicked it up a notch and there is an extra layer of squishy water under my skin all over my body. My eyes and face are all puffed up and I don’t look like “me”. Along with the extra inflammation comes burning pain. Then there is the extra acne that made a grand appearance this morning. My brain is foggy like an English moor. Besides that I just feel heavy and toxic and downright gross 😑

This will more than likely last for a few days. What I can do about it is detox like a mad woman, take binders, drink lots of water, make sure I get as many doses of my anti-mast cell suspension in the next few days as I can.

And there you have it. But What would have happened if I had had a major cheat? I don’t even want to think about it. 
The iGg allergy list. 

Brick Walls, Speed Bumps, Painting & Needy Dogs

What do you title a mish mash post that’s kind of an overview of random life stuff with no real object in mind? The above of course.

It was a rough week with fatigue and not quite feeling like myself (disconnected from reality), and dealing with some intense pain and yuckiness that only some girls know about… I’m still stretched kind of thin as far as having to be less social 😦  

So It is Saturday night and it’s been rainy all day and well, not much has happened. I missed a friends get together last night because of “too tired” (which I think shall henceforth be known as “TT”.  I didn’t do anything active or productive today also because of TT. And my fear is that “it’s happening again”; all we chronic illness sufferers know what “it” is. It’s being in that slump (which I’m so sad to say some of us never leave) where you kind of crawl out of bed, sort of eat, maybe take a bath, try to get moving, find acceptance in the “blah”, take pills, miss pills, forget pills, don’t feel like taking pills…. Another day in the life.

So why I am afraid? Because I’ve been blessed enough that even though I haven’t been great lately, I’ve been creative; creative to the point it feels like I’m making up for the years of losing that part of my brain. It’s been a huge a blessing, and God has been giving me abilities I’ve never had and never thought I would have. Today however besides just being tired and in pain I hit a wall while painting something prophetic that had been on my heart. I got frustrated, grumpy and stressed out and couldn’t go further. So rather than sit alone in my room (where I’ve spent what seems to be half of my life) I felt like I’d rather get out, tired or not and lose myself in a movie. Thankfully the theatre is only two miles away and sitting on your bum watching a movie takes no energy. So for over two hours I watched Wolverine’s last stand…. 

I got home to the love of my life Shiloh who laid her head on my arm and looked into my eyes like I had abandoned her for a year. This dog loves me like I’m her sun and stars 🙂 

Now I’m in bed, just feeling headachy and still pondering the chest pain I’ve had for over a week, and hoping that maybe tomorrow I can knock down that brick wall with the power of a paintbrush, and that TT won’t show up tomorrow. 


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. 

How Do You Apologize For Your Brain?

My Color Is Lyme

lyme_brain(information from underourskin.com)

Before proper long-term Lyme treatment on the left, and after proper treatment on the right. The left image reveals an oxygen starved brain. Interestingly enough when I was diagnosed with Bartonella in my brain and brain stem in July I was told I was not getting enough oxygen to my brain.

I am going to try my best and blog tonight through the fatigue of the aftermath of a 16 hour (so far) day. The last couple months have been really rough with worse fatigue, brain fog, body pain, water retention and other stuff…

I am pretty certain I have entered the ring of fire of die-off yet again since my last two treks to Idaho October 13th and December 1st, but things have greatly intensified since the 1st. My body pain and fatigue have been intense. On my last visit the doctor identified a co-infection in…

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Hope, And A Look Back

12/23/15. Hope,
I wrote the short essay below about 3 years ago. I remember acutely how it feels to be in this place; it is like a living death in some ways… losing yourself.
2012 was one of the worst years of my life even though I finally had a diagnosis of what was wrong with me. It is the year I went through being bedridden during initial treatment, being unemployed and unable to work, unrelated to illness I was devastated that I had been believing something for 7 years that I thought was from God and ended up being false. My faith for the first time in my life faltered and I stopped talking to Daddy.
How much has changed in 3 years. I am however incredibly grateful because I can look at what God has done in my life and how He has changed me (for the better!). He has truly taught me what rejoicing in trials looks like and that I can live the truth that all things work together for the good of those who love Him and are called according to His purpose. He has used me in unexpected ways and brought people into my life that I would not have met if it had not been for my illness. Now that is God.
For those who are still in a place of deep suffering my heart reaches out to. I would be happy to be contacted either through this blog or my Facebook page so that I can do my best to encourage you.
So here is what being a little lost girl felt like:

Little Lost Girl
The Other Toll Of An Auto-Immune Disease

At some point I stopped looking in the mirror; of course not quite literally because I need to do my hair and makeup in the morning, but a long time ago I stopped “seeing”. So it was a bit of a shock when one day I actually did see, and I didn’t recognize myself. I look old, I look sick, I look puffy, I look fat, I look frumpy. Gone is the girl I see in photos from several years ago, and not just physically, because that girl had things she enjoyed doing… people she wanted to spend time with…she had an inner passion for the things she loved, and had so many hopes and dreams….

I look in my closet and there are the clothes that I no longer wear, the digital camera that I have never used, the containers of craft materials that I no longer have an interest in….because life used to be not only about today, but about tomorrow too. Now I struggle to get through just one day at a time, just surviving, there is no energy for anything else, and it is more than physical, my brain is tired too. I used to love crosswords, but sometimes it is too hard to recall the words I know that I know, or to spell words that I know are locked somewhere in my toxic mind.  People are too hard to be around, not because I don’t like them, but talking and engaging takes mental energy, and that is easily used up doing my job everyday (thank God He has given me the strength. So when I am quiet and don’t feel like talking, I am more than likely not in a bad mood, and it has nothing to do with you, I am just shut down.

I miss my personality; it is actually hard to recall who I am. I know I used to enjoy so many things, but I am not sure what they all were. I think that I will need to rediscover myself, and see what emerges when the chrysalis of illness falls away.

So, I am writing this not to whine nor for pity, but just to share what chronic illness can do to the core of who you are as a human being. My sister and I talk and share all the time about what we are going through, and how what we are feeling affects us socially and mentally. How each of us wants to tell everyone we see from our friends to people in the grocery store “You don’t understand, this isn’t me, I’m really someone else…”
But thankfully there seems to be hope. Treatment has been rough, and the different medications aren’t fun, but I believe that finally after possibly two decades of having this garbage in my body and not understanding what was wrong with me, there are answers. I have been told by my two doctors and even by friends and acquaintances that next year everything will be different. I want to hope so badly that this will be true, and if it is, I might emerge again, but will I be who I was or a little different? We shall see…

No Day But Today

Hope Beyond

A long time ago I made a decision to use the word “love” a little more freely.  That decision came with another which was to not let concerns of what others would think of that get in the way of expressing that love.  For example, if it was a female friend then she would get that the “love” was within the context of loving a fellow believer in Jesus Christ, love like a sister that I never had, and possibly a bond that simply comes with walking through many years of life’s ups and downs together.  The transition would be instant, from “Take Care” at the end of an email to “Love, Julie” if we had just endured a crisis together.  When one heart is hurting, there is no other word that will suffice.  Love covers things well.

Born again believers know the author of love as God himself.  The…

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