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

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. 

Yoga Pants: Stop Hating! Fashion’s Love Letter To Lymies….

Ok, so this post is going to be a little tongue and cheek; since chronic illness is such serious business let’s laugh a little while taking a totally honest and truthful look at the oft laughed at yoga pant and legging trend.

Ready? 

Ahh yoga pants; we love and hate you. Your wonderful, stretchy, giving, comfy, form-fitting cotton-spandex (or whatever) blend. Yes you can be brutal. You hide nothing and display our muffin tops, jelly rolls, donuts, jello thighs and all the rest of the glorious imperfections of our bodies for the world to see (and to turn from in horror!). You are not for everyone that is for sure and you leave imprints on our brains of those that just “shouldn’t” wear you that can’t be erased; like a sudden bright light at the back of our retinas.

And yet, to we the invisible illness sufferers, the chronically ill, you, our yoga pants and your cousin the leggings, are our best friends.

You never cut into our tender skin that is always in pain.

You don’t dig into our flesh with your unforgiving seams when our bodies swell and bloat. When we change sizes (sometimes within a few hours) due to our inflammation, you change with us rather than punishing us.

You don’t remind us by not fitting when our inflammation goes haywire and we can’t get into any of our clothes.

And did I mention you are comfortable and adaptable? We can go from lying on the couch with you being all casual and lazy, to putting on a nice long top or little dress right over you and be ready to go out the door. You dress up and you dress down with a cute pair of boots and a pea coat. 

You are also a great friend during doctor visits; because when things get invasive you hug us tightly but aren’t so bulky that you get in the way when doctors poke and prod. Oh and bless you Y.P. And leggings when we get on the doctor’s scale (you don’t weigh much my friend). 

Jeans and slacks have betrayed me (😡) and  I have said goodbye to them now for about eight years as the edema in my legs makes me wear a size 14-16 for my lower legs, which just doesn’t jive with my size 2 waist. 

But all hail my dress black yoga pants which serve me well everyday; lounging, sleeping, working, churching…. yes I still hide my legs in shame and humiliation and never sit down without something on my lap and draped over my knees to hide the hideous bulbous mess that is my lower body… but at least my yoga pants love me and don’t punish or judge 🙂

The swollen foot escaped!



The pants that love you back ❤ (not my butt 😉)

A “Bad Day” in Lyme Recovery

So today is sort of a mini follow up to Confessions Of A Functioning Lymie;

And honestly today wasn’t “bad”, but it wasn’t easy.

At this point after years of treatment I am not as sick as many, so relative to many I have no complaints. I have still been having some harder days lately due to increased work schedule and “?”. It’s the “?” That drives us mad. “What did I do to make things worse?” “Was it that slice of organic cheese? (Not supposed to have dairy)” “was it the fact that I’ve been having some dark chocolate lately?” “Could it be those little cheats can culminate in autoimmune fury?”
I woke up at 9am in order to try and go to church and forwent an extra hour of sleep that I probably would have gotten. But for whatever the reasons, today I woke up with my face puffy, feeling hungover and heavy and my limbs (especially my legs) full of fluid and enormous. (Took me 5 minutes to squeeze into my leggings). 

My POTS seems exacerbated along with the flare up and so standing at the sink to get ready left me a little breathless. I was 45 minutes late to church as I couldn’t get out of the house until after 11 (this time was spent trying to get moving, trying to wake up and doing a coffee enema to see if that helped the inflammation). 

The only reason I didn’t stay home all together was a friend wanted to take me out to lunch after church, and I don’t get out enough as it is.

So I am glad I went and I had a good time, but was uncomfortable the whole afternoon, foggy and in pain. My vision also gets blurry with increased inflammation .

And after this “strenuous” 5 hour afternoon out what did I come home and do? I went straight to sleep for a couple hours.
Still grateful I am mobile and done dealing with the severity of symptoms I used to, but a lot of days are still a struggle and every expenditure costs me spoons.

What a loving caring friend I have despite my struggles ❤️ 

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…

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…

All Natural Miracle Antihistamine?

i am already a firm believer in the healing power of essential oils and have found several to be useful. 

Today with my inflammation and pain symptoms being at code red I started seeking if there were oils that would work as an antihistamine, and bingo! Found several great articles on the magic LLP (lavender, lemon and peppermint). Can be used both externally and internally.

I read a few testimonials and articles and I’m going to give it a try. Took my first capsule 15 minutes ago. I will let everyone know how it works, and in the mean time here is some great info:

EO Antihistamine