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

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. 

Some Honest Thoughts On A Sunday Afternoon… When Life Reshapes Hope

I have no answers today, no deep wisdom (I don’t think), only a seeking mind on how to perceive life as it stands and on expectations for the future.

I was thinking that our hopes and dreams are built on a foundation of what we feel is possible. We do not tend to realistically hope for things that are not in the realm of possibility; I guess if we do we call them pipe dreams. But when long term illness and passing years rob you of the possibilities that are still reachable for a “normal” person, how do you dream? What does Hope look like now?

Of course the first dream for anyone that has been sick for a long time is for health, and of course health is the gateway to everything else we want in life: relationships, activities, happiness, success, travel,  family…LIFE. 

Now chronic illness looks a little different for every individual; For myself I am immensely blessed that I have come a long way in my (5?) years of treatment since Lyme diagnosis and there has been a lot of improvement. But the struggles continue and I may continue to struggle with autoimmune and other conditions for the rest of my life. So as my “younger” years continue to diminish like a fading horizon line, I am wondering how to rebuild hopes that are now built on a different foundation of what is possible.

I had an emotional reshaping of my hopes with this last downturn in health (Relinquishing hope), and a lot that I had been holding onto for many years got torn down. I have been living in that place of rubble for several months now and I guess I am questioning whether rebuilding the hope tower is worth it. Of course it will look very different than before and be much smaller, but right now I’m not sure what to build it with. Or should I? Is that my job or God’s? Honestly I’m at a loss. I have never stopped believing that my future and hope is in God, that He has a reason and purpose in everything He allows in my life, but what His plans are (obviously) are vastly different from anything I ever envisioned.

So here I sit on a Sunday afternoon in an empty house with a silky terrier puppy for company (who is under my care for the weekend), feeling quite lonely for some reason and pondering all of the above and maybe letting myself cry just a little. I am looking at turning 38 the last day of this year, and the years don’t slow down. Life for the chronically ill is like a treadmill; running in place and never getting anywhere but expending energy all the same and there is no end for exhaustion. 

So friends, as I have said goodbye to children, to love, to independence, to fulfillment, to financial stability, to success, to travel, to normalcy, and all the perks that come with those things…. how and with what do I rebuild my hope tower? We shall see. 

Are We All Crazy?/Sanity Is Relative

I think “crazy” is not so easily definable as we think sometimes and has levels and facets, different causes and effects. I think we can all dip into “crazy” from time to time in moments or seasons when our view of the world is warped through the lens of something that throws us for a loop.                                                              Another definition of crazy is “not in one’s right mind.”

I have asked this question of myself many times on days when my brain and emotions betray me, when my view of the world and my situation in a given moment seem warped; “am I crazy?” Not all the time of course, and not as a constant, but there are times when I know I’m not in my right mind. 

Now we know that Lyme and coinfections cross the blood brain barrier and can literally infect the mind, but I think many times it is more complicated and more subtle things going on than even those factors. You see the entire life paradigm is different for people with certain chronic illnesses and not in rhythm with most people. The box we live in and our life experiences are very different, especially after living this way for many years. So I guess it makes sense that we are not always normal. After all, normal is a sliding scale based on majority.

The idea for this post came lying in bed last night after seeing posts from other Lyme/Chronic Illness sufferers on Facebook and thinking that what we suffer physically, cognitively and emotionally can make our viewpoints and behaviors pretty skewed:  I see desperation, scattered emotions, TMI, prolific postings, saying things publicly that shouldn’t be said, weird viewpoints that seem to come from places of isolation and disconnection. But I sometimes do it too, and honestly I struggle sometimes with how to balance being honest and “real” in the moment and when it would be best to keep stuff to myself. What’s the answer? I don’t know. I do try and consider my audience; my blog and Lyme page is primarily for fellow sufferers and those that will come after us, to know they are not alone. It is also for friends and family of the ill to get a window into this world. But from time to time I do regret some things I put out there, primarily to my healthy friends, I really must come off as cracked once and a while. I start to second guess myself especially if I get no response to texts or emails and I think people must have a negative opinion of me.

 But if we are talking brain stuff, even beyond Lyme and coinfections there is so much that effects the mind it is incredible. Honestly when I consider the complexity of our brains and the 100 trillion (yes, trillion) neuron connections in our brain I am in awe that the chronically ill with all that we are dealing with are not stark-raving mad. Really  We are fearfully and wonderfully made.
I had two doctor appointments this week and even though these two brilliant physicians come at treatment and diagnosis from different directions the conclusions are compatible. I cannot even begin to repeat the science and biology that was explained to me by these two doctors who can talk complicated biology and genetics like most of us do daily English about what is going on in my body, but I remember a few things: Pooling dopamine in my brain, dysautonomia, receptors not communicating, parasympathetic nervous system not doing its job….. But what is great is to get validation on the feeling of “disconnect” and yoyo emotions (aka crazy) and knowing that there are real physical reasons behind it. This also helps me understand the ebb and flow of having cycles where I don’t feel in my right mind and not knowing why I feel more normal on some days than others. 
So what’s the point of this post? Not sure. But maybe if your chronically ill friend that “looks fine” doesn’t always seem rational, maybe they are experiencing a little slice of crazy. 

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 🙂


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