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. 

When Life Punishes You For Living

Here I am again, posting on another “bad” day.

You see I’ve had some decent ones, even though I never feel “great” I’ve had consecutive weeks/months of having a better balance here and there. Inflammation has been acutely worse for weeks, but I’ve been able to maneuver around it to a point. Yes I’ve had days of crashing more and napping more, yes I’ve had to say no to going to church and Bible study because “extras” are too much. (Hey wait a minute! Maybe I’ve been struggling more than I’ve acknowledged). But anyway, then there is today; today when I feel my body is getting revenge for all my betrayal. Today when I feel stripped to the bone. I woke up at 11am (yeah I know), and still felt I could barely climb out of bed. Breakfast happened at 12:30 sitting in a detox bath, and I feel completely horrible: achy, stiff, toxic, beyond fatigued, heavy, swollen, fuzzy-brained. The autoimmune overactivity is high and I can both see and feel the fluid and pain.

So what did I do to myself to deserve this? That is always the question I first ask because self-blame is my automatic go-to. Well what I “did” was try being semi-normal for a few weeks: having to work a couple weeks full time, eating some “bad” stuff here and there (and by bad I mean bad for me personally; like dark chocolate, some organic mayo, some cayenne, a little vegan ice cream,etc.). Am I right in beating myself up? I am never sure how bad to guilt trip myself. It’s so hard when all you want to do is live and your body is just really not into that.

I am still counting the days until my new patient consult on the 14th at Sophia to address autoimmune issues and mast cell activation disorder (assuming that’s what’s going on). I’ve had a couple doctors confirm that Borrelia, Bartonella, Babesia, Epstein Barr, Erlychia…and all the rest including viral coinfections, are”fixed”, so I’m hoping the last hurdle is the autoimmune, but it’s a big hurdle. 

I have not paid any attention to fundraising for a long time; mostly being it makes me feel shamed, embarrassed, unworthy, guilty, and all the feelings that orbit the above. But more than that is my constant guilt of being a drain on my family. Thankfully family medical expenses have come down a bit from around 6,000 a month to around 2,000, which is good but still difficult. As my sister and I are about to embark pursuing this new clinic though they may jump up again exponentially, so I will put a link here so anyone that is able and led to help. Youcaring

So here I sit in bed on a Sunday afternoon wishing I could have gone to church, wishing I could take my dog out, wishing I could be out and about. Tomorrow may be better, I’ve been through this more times than I can count and I know that often things won’t be so bad the next day. On a day like this things always feel so bleak, but I know that tomorrow always brings new hope and a different viewpoint.

I’m glad I write on bad days, when I can’t move and I hurt and can’t think well; Writing gives me a sense of purpose and makes me feel I’m still here, still fighting.

See you tomorrow 🌅

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 ❤️ 

The Chronic Illness Sufferer’s Dilemma: To Post Or Not To Post, That Is The Question

Nobody is normal. 
Everyone is unique.

That said,  long term illness changes a person; it changes your mind, your emotions, your perspective, your way of thinking… to say nothing of your body.

And the places in your mind that change can be impossible to perceive what is caused by the physical (hey come on, LITERAL viruses and bacteria in our brains) or the changes that come from long-term isolation, suffering, frustration, loneliness, abandonment, hopelessness…. (trust me even with the deepest introspection lines are blurry).
So when you are in this bubble of misery and feeling desperate; many of us reach that crossroad decision of whether to reach out publicly or not. Now some do so all the time, and some do so seldomly. I want to share with you, the healthy person, the “normal” person, what goes on in our heads and where the need to reach out comes from. Because to you seeing our (sometimes frequent) posts regarding how we are feeling physically and mentally can come off as….

Desperate

Attention-getting

Overly dramatic

Whiny

Ungrateful

Emotionally unstable

Lacking faith

Hypochondriac 

Lacking strength 

Or “_____” fill in the blank 
And honestly maybe some chronic illness sufferers are. BUT, I am asking you to consider grace, and here is why. 

Imagine you are living a fairly normal active life; you work, you socialize with friends a few times a week, maybe you are also busy with kids. You DO stuff! You go out to movies, you eat out at restaurants, you meet friends for coffee, you have a lot of human interaction at work, you sometimes take day trips or mini vacations, your life may not be perfect or exciting, but it is full. 

One day your body starts to betray you. Suddenly all the normal daily things that were no big deal become as hard as lifting heavy boulders. Your entire body is tired, tired to the point it feels like you have lead in your veins. You swear earth’s gravity just dialed it up a notch as you struggle to go up the same staircase you have been bounding up the last five years. 

You start sleeping a LOT more, so much more you start to feel guilt over your laziness. Even after a full night sleep your body starts to shut down in the middle of the day and you need to nap. The thing is all this extra sleep doesn’t help and you are just as tired and fatigued when you wake up in the morning as the night before. Even worse you feel hungover, even without alcohol: toxic, heavy, foggy, headache, basically like sludge.

So of course you pump yourself full of caffeine because you have a life and things to do… only the caffeine is a quick fix that doesn’t last, so you have more. After a few cycles of this you start to blow out your adrenals, and things get worse…. You start to feel like you are letting the people in your life down as you can’t be there for them in the capacity you were only a short while ago.
Oh and did I mention the pain? You are dealing with pain that has no business in your body at your age! You feel old and achy. Joints and tendons, muscles and tissues that you never even “felt” at all before, are making their presence known by infusing non-stop pain. 
Along with all of this (and a myriad of other symptoms I could mention) is the fact that your mind and your thinking are as foggy as your body. You know that feeling when it’s past your bed time and you feel your brain trying to shut down for the night? How everything becomes difficult if you are fighting sleep? Trying to just finish that chapter, watch the last 10 minutes of that movie as your brain wants to sleep….Now it feels like that ALL the time, all hours of the day as your brain is constantly trying to go down as you are trying to get it to go up. Every waking moment is a battle.

Normal conversations become difficult because it feels like you are fighting through fog to both process what you are hearing while trying to formulate the appropriate response. You never knew until now that it actually takes energy to communicate and be with people. You frustrate yourself as word recollection fails you and you feel dumb as you can’t seem to formulate articulate conversation.
As time goes on all this takes a toll and you start saying no to things. The energy it takes even to get ready, drive places, prepare for things… becomes too much, and you start having to pick and choose what you are able to do in a day, or even in a week or month as things get worse.

You start realizing that every activity also requires recovery time, and one afternoon out may mean you need two days in bed afterward.

Your world grows smaller.

As time goes on mentally and emotionally you for through all kinds of cycles that can be up and down and all around. These can swing extremely even over the course of one day from crying to anger to apathy. 
At first all the people in your life are supportive, but as time goes on and you don’t get better, and you have seen this specialist, and that specialist and tried every suggestion of every caring friend from acupuncture, to massage, to “this amazing doctor that helped my friend who had the same problem!”

… you have read every article ever sent to you on any condition that even sounds similar, you have done crazy alternative things you would never have thought you would ever try…. your friends start to drop away, they check in on you less and less, they stop inviting you to things because they know you will just say “no”. 

Life moves on without you and as the years go by your world gets smaller and smaller and smaller until you find you are alone most of the time.

You probably at this point have little to no money because it’s been spent trying to figure out what’s wrong with you and/or trying to get better. You also probably either can only work very little or not at all, and if you can work it drains you so much you have nothing left for any semblance of a life.  
Remember when I mentioned the muddled place of your mind and your emotions caused by both the physical and psychological? This is where you are now. You feel a little “crazy” and desperate and sad and lonely. Since you don’t see people in person so much anymore you reach out to your friends online; both your real-world friends and your friends who you have now met in your chronic illness forums and such.
So I am speaking to you; “normal” person, who I love and admire. When you see this chronically ill person prolifically posting, “wanting attention”, talking about what they are going through very publicly (sometimes) going into TMI territory…. know that this did not happen overnight. This is the same person you know and love and they are beyond desperate to be the person they once were. 
They post because:
They want fellowship,

They want friendship, 

They want to both hear and be heard,

They need a sounding block,

They want to feel normal,

They don’t want to disappear and be forgotten

They want to have a glimpse of normalcy and online may be all they have

They don’t see people much face-to-face so “face”-book is their life.
Hear me now as I write this for my sick brothers and sisters!

Everyone needs people! When you are sick and isolated online is your people!

We are not grand-standers or attention getters (at least not most of us) we are people just like you who have had our lives changed and shaped by our illness and our circumstances. All we want is to be normal and healthy. We covet the little things that most people take for granted; even just taking a walk on a sunny day. 
One more thing I want you to know; worry about the chronically ill people who don’t post and instead stay quiet. They are experiencing everything the communicators are, they are just internalizing their pain versus reaching out.  

It is: Having an outlet, versus internalizing everything

Isolation, versus reaching out

Honesty, versus putting on a happy face

I have seen too many of the “quiet one’s” obituaries online, (self inflicted.)
Please also know the  anxiety we go through on what to post and what not to post. 

It is SO hard to judge because (especially) on a bad day our perspectives are askew… and the reactions we get from people also vary greatly.:

You get the positive feedback from the chronic illness community;

 “thank you so much for sharing, I am not alone”.

  “so glad to hear another person’s perspective”.

“Thank you for being honest and blazing a trail for others that will come behind you.”

This community supports you and your difficulties as you support them. And this is a safe and honest place to be raw and real in your times of suffering. 

But, you also get the negative reactions of people who think you’re a drama queen, or are sick of hearing about your pain, or… (see list at beginning of post). So you get the negative feedback, or the stony silence of family members, or the snubs and shuns of people who used to support you….
In closing; why am I posting this? I will tell you it’s not for attention or sympathy. I am giving voice to the silent suffering ones. I am advocating for those whose families don’t believe them. I am opening a window into a world (I hope and pray) you will never experience so that you can have a better understanding of your sick friend or family member.

This seems like a good day to do this, Christmas Eve when hearts should be open, love should abound, peace and charity reign over all else 💚

Confessions Of A “Functioning Lymie”

I look fine. I may seem fine. I probably sound fine. There are some new photos on Facebook from a couple weeks ago of me out with friends, smiling and having fun, having a few days of normalcy that are momentous and rare to me, but would probably not be a big deal for you and just a normal part of life. They were taken during one of those glorious and all too rare periods when I had several consecutive days of energy and feeling pretty good. (Today is not one of those days.) 

(*disclaimer; I have to attest to the fact that I am still on an upward track with my overall health and what I am experiencing right now as far as this current setback is die off from recent treatment on May 23rd….at least I believe so). 

But what people don’t see are the days inbetween, the days that I spend in a hazy purgatory of fatigue, fuzz, pain, swelling, isolation and my body’s betrayal against life itself. 

I have to work tomorrow and I know that somehow I will pull together like I always do and put everything I have into doing my best at work, doing everything I can to just seem normal and do my job to the best of my ability, and thankfully I have been blessed over the years to stagger along in this manner; being a functioning Lymie.

 I also have a gathering to go to after work tomorow and this is causing me distress. Why? Not because I don’t want to go, but the complete opposite! I want to badly and it is vitally important to me. But for me I don’t usually do anything on a work day afterward because I just spent the day giving 100% to my job and I will be drained, tired and numb. Instead of having fun I am worried I will just be in a haze of fatigue and rather than enjoying myself I will be a half-human whose mind is only about 30% present and therefore will get about 30% enjoyment being with my dear friend. These are the challenges faced by the upright and mobile Lymie. Spoons anyone? (Spoon Theory)

That said, when others can’t see the sickness (I haven’t lost hair, I don’t have an IV port or a wheelchair, I’m not gaunt or jaundiced) how can I convey what it’s like to be a functioning Lymie? (Please note I am also using the term “Lymie”right now in a generalist sense because I believe I am clear of the Borrelia itself at this point but I just got treated for still-present coinfections: Erhlychia, Clamydia (non-STD form), Epstein-Barr, Lyme Virus Coinfection A, Lyme Virus Coinfection C and Protozoa. But as we all know chronic Lyme is never just Borrelia). 
I know that the yoyoing makes no sense to outside observers, those who don’t understand chronic Lyme; how can you be having fun at a festival one weekend and then in bed unable to socialize the next? Trust me it’s complicated, and frustrating isn’t a strong enough word for those of us that live through it. It is like being baited with tastes of life and constantly having it snatched away again. 

So what is life like when I’m not doing so well, and you don’t see me, and there are no photos taken? :

I wake up at 10am, I  don’t feel like moving. I feel groggy and heavy and “hungover”. I had a hard time falling alseep last night, like most nights. It’s a catch 22 because the stuff I take to help me sleep can also leave me feeling tired the next morning. Despite getting 9 hours of sleep I don’t feel rested at all….I may need to take a nap today. My brain feels like it is still in that state of shutting down, you know like how it feels when you are in the process of trying to fall asleep? It is doing the opposite of what it should be doing, being that I am trying to wake up. I do haul myself out of bed and I try and have some caffeine to counteract my wayward brain and body. I also take my morning pills. Since they are supposed to be taken away from food I wonder as I do every morning whether the creamy fluids are a problem. As usual the matcha green tea hemp latte isn’t doing it as far as waking me up, and although I am not supposed to have coffee, I reach for it anyway hoping that it will be my nectar of life. Sigh, I know this will continue the vicious cycle of inflammation and irritating my iGg reaction, but I so desperately want to feel awake. Choices choices…

I then decide to take a bath with Epsom salt and baking soda to help with the pain and stiffness, and to help me detox to (hopefully) help with this hungover feeling. After my tea and coffee and morning pills I feel too nauseous to really eat. I will probably have a bite of something here and there but on most days like this breakfast and lunch sort of meld together and meals get messed up. I also have my two doses of meds, morning and night that have to be taken two hours away from food and other pills….I am already off schedule and my day just started. I pretty much know that my dose of cholestyramine will get skipped yet again (like it does most days) because it also has to be taken 4 hours away from food or other pills. Then there are the pills to be taken with food… Might not get those in today either. This is impossible. 

I spend maybe an hour in the bath catching up with Facebook  and mail, listening to my current audio book, reading my Bible app and playing Candy Crush and Words With Friends. I eventually drain the water and spend at least another 30 minutes sitting in an empty tub because after a bath or shower I usually feel weaker, more lightheaded and struggle a little with feeling breathless and have a harder heartbeat. (This phenomenon: Why Do I Feel Worse After A Shower?). 

I finally get out and get dressed, my equilibrium is off and I’m a little tippy. This is not entirely normal for me and I attribute it to die off/herx (What is a Herx?)

I look down at my body which I usually try and avoid at all costs; it is swollen and the edema is especially bad, and my legs are jiggling like a water bed (you think this is an exaggeration, it is not). The water retention makes my legs much bigger than they would be (come to think of it I haven’t seen what my body would look like without fluid in the last 7 years or so), It has also been this long since I have worn jeans or slacks because of aforementioned fluid. Did I mention it also hurts? Imagine the worst sunburn you have ever experienced, now picture the deep muscle ache of a hard workout after having not worked out for months… Got it? Okay. Now combine the two together and imagine them not on your skin or in your muscles but in all the deep tissues in your legs. Now imagine that pain is constant and you’ve had it for so many years you can’t remember a day without that pain. The only variance is that on good days it’s a low-grade 2, and on bad days it can be an Advil-inducing 8. This is a further incentive to keep a strict diet because increased pain and swelling can be almost instantaneous with ingestion of “bad” foods. (although I fail so often with a bite here, a nibble there…and remember the problem of coffee!) Thankfully for the most part it has been improving and today the fluid is bad , but the pain is maybe a 4, even though the lower half of my body  (that I always hide and cover up) looks like Rosemary from Shallow Hal. I am just blessed not to have cankles today. 

I see my face in the mirror for the first time today and it is of course all puffed up, most notably under my eyes. This is now of course also my normal and I wonder what I would look like “unpuffed”, I do get glimpses from time to time.

It’s now into the afternoon, I  haven’t eaten much, I feel fuzzy in my head and tired despite my green tea and coffee. I really don’t know what to do with myself today because I’m too tired, so I sit on my bed with my phone. I would love to go on a walk or bike ride, but I feel like I can’t even force myself to get up and go do anything. I have my standard low grade headache; this is something I actually don’t really complain about or even acknowledge because it is so normal I don’t know what it feels like not to have a headache. 

Many of you wonder why I don’t paint or do something artistic on my days off like this, it’s hard to explain. There is a definite disconnect in this hazy purgatory where you are aware that there is a part of you that can do those things and enjoys doing those things, but you can’t access that piece of yourself, even if you wanted to. Believe me I’ve tried! I’ve sat down and tried to paint on days like this and it’s like trying to draw water from an empty well…it just doesn’t happen.

So here I sit, another day of nothing. Another day of waste. A day where the tears do come. Another day sacrificed to the hungry Lyme gods that eat our lives and our souls…one apathetic day at a time.                                                                   

I’ve given so many years of my life to days like this they can’t be counted. I’ve given my twenties, and now most of my thirties. Only Lymies will understand this, but this disease EATS YOU! It eats your body, your mind, what makes you you. It also eats your time on this earth.. Like water eroding the shoreline.

Today I need to pray more. Today I need to focus on God’s truths; because on days like today that are empty nothing’s sucked into the void, I have nothing else. 

Looking “fine” a couple weeks ago

I’m Literally Sick and Tired Of Running Out Of Spoons

Most *Lymies at this point will know about The Spoon Theory, so when I say I keep running out of spoons you will know what I mean.

I am frustrated because I have been going through a cycle the last couple months where I have fewer spoons to use (I’m short of a whole set right now). Again as many *Lymies also know  you go through good and bad cycles that can last for months, and what is FRUSTRATING is that you don’t know why!

#4!

You can drive yourself crazy trying to analyze every little thing you eat and do that brings you up or brings you down, and sometimes you just don’t know. 

all that said I had a pretty good weekend; I DID stuff. Stuff with people! And it felt really good. But today I am feeling overtaxed and that I need a day of rest after doing too much; you know, gotta recoup from being “normal”.

It stinks because I have been missing my Monday night Bible study for weeks, and I miss the people desperately and I need the spiritual connection. 

I could spend a few hundred words here trying to dissect why I have been in a slump, and people will inevitably ask “have you tried this or that?”; all I can say is that I probably have the best care practitioners I could possibly have and I have gotten over a lot of stuff with their help and expertise, I will keep trusting I will find answers for the rest. So You Know Someone With Lyme

*at this point I know I have gotten a lot of the Borrelia and coinfections under control, but there is also a lot of other stuff going on in my body (see past posts). So it is speculative what’s going on internally right now 😛 

Anyway, it all comes back to balance and having faith that someday (hopefully soon) I can do stuff, stuff with people and not have to pay for it. 

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.