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 πŸ’š

Being Real

I wanted to speak to all of you from the heart for a few minutes (besides a health and circumstances update). I know that my posts can be a little wordy, but if you can stick with me to the end I would really appreciate it. I have had some serious ups and downs recently, not just physically but emotionally, mentally and spiritually too, and that is something I am going to try and be raw and real about.
As you all know these health difficulties have been plaguing myself and my family for decades, but especially my sister and I. And with this recent setback (again) it is so easy to feel depressed, lonely and hopeless….
Today on this sunny Saturday I think of all of you out there, socializing, having fun, seeing friends, being outside, doing things…. living normally. And for me this morning my POTS is acting up and it is hard for me to even stand without feeling breathless and weak and having waves of heat. (More on POTS below). Another day of my life sacrificed to the Lyme gods as they accept my life as an offering one day at a time (please no one be offended by this little metaphor). 
So this is going to be another in a long line of weekends for me basically in bed resting. I have given about 2/3 of my adult life to this: go to work, go to bed, repeat. I’m back in that cycle where I have just enough strength to work my part time job….and not much else. I call these cycles many things, including Survival Mode and the Chronic Illness Coma. I feel isolated, forgotten, left out and lonely. I keep seeing the years of my life tick by and my life eroding away, with opportunities disappearing on a fading horizon. 

Try and picture for a moment if this was your life for years and years, and you found yourself in your late thirties having your youth behind you having never properly experienced it. You are alone. You’ve never had a significant other or even an opportunity to get one, and you watch most of your friends live there lives from a distance doing “normal” things that you have never experienced and are not normal for you.
I had a very bad weekend last week; besides having a scare and being in the ER on Saturday, I was also very depressed and the enemy saw an opportunity to open a wound. 
The mind can go down Dark rabbit holes so easily: This isn’t living. Alone. Single. Sick. Struggling. My brain and body betray me. Thinking about eventually having my parents die and (gulp) Shiloh in time, and being utterly alone and destitute with no one to be a support is not a fun thought. I also feel like I am such a financial burden and my parents would be so much better off and more secure if I just died. (That’s a major one Satan like to come at me with). 
Thank you to a couple friends who encouraged me last Sunday and reminded me who I am in Christ, and who just listened and let me be real with my feelings.

That said, I am peeking back out of that dark corner and God is reminding me that faith and Who He is for me and His power over my circumstances have nothing to do with my emotions or mindset or the infections in my body and brain that are effecting those things.

After all, faith is all about what we do not see, what we do not feel, and relying on He Who dwells outside the shallowness of those things. 
Why did I share all that? I don’t think it’s because I want pity. I want to be normal, I just want to live, I don’t want to be a person that needs pity! No, rather I just want to be heard and understood and I feel like when I drop off the face of the earth that I don’t do so to the people in my life as well, and I’m just forgotten. 

I do want to thank the couple people who do stay in contact with me, it means the world. Just a text, just a “hi”, nothing fancy, just knowing I’m not forgotten.
Why The Chronically Ill Post TMI

Thank you so much for reading this far.
As far as myself and my sister Holly as you know we are going through treatments right now to deal with some deep parasitic and other infections in our bodies that are not only gut related but are attacking our livers, kidneys and other organs too, and the treatment has been rough. I just did my retest lab work this last week to confirm what infections remain after phase 1 and how to approach my Phase 2 in this next round of treatment. I have had it confirmed that (among other things) I do still have Bartonella: What is Bartonella & its Symptoms?

 Babesia: What is Babesia & its Symptoms?

which are the two major Lyme coinfections. 

My POTS which is usually mild also goes to more of a moderate degree when I have a flare up, and that’s been difficult ( Lyme & POTS )
My sister and I could use prayer that these treatments work, and that maybe this will be the beginning to the end of this multi-decade battle.
Lyme (collective term for Borrelia, coinfections and complications) is so hard to treat because it can change form, hide from the immune system, be antibiotic resistant, cross the blood-brain barrier and infect any and all parts of the body, and treatments are basically going layer by layer, getting deep stuff to come to the surface, and repeating the process. 

A good metaphor would be weeding a garden: you pull weeds, you rototill, you use poison, you pull up roots and do your best with what you see. But you miss a few roots, you can’t always identify every weed, and the “poison” ruins the soil so you have to keep replenishing as you’re killing, and just when you think you got it all…. you find there’s stuff you missed that starts growing and taking over again.
Here is also a good link on why treatments make you feel worse: What is a Herx?

Wow guys, thanks for sticking with me and hearing me out! Even with all that writing it is still just a summary. 

Please also pray for God’s financial provision as for this season expenses have again skyrocketed into about 5,000 a month.

I have been unable to paint again, and that has been disheartening. If anyone has any clever ideas for fundraisers let me know! (It would have to be in the realm of my capacity). 

Steidl Family Lyme Fund
Jennifer’s Lyme Fund
Thank you again for taking the time to read all this. 

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 πŸ™‚

The swollen foot escaped!



The pants that love you back ❀ (not my butt πŸ˜‰)

The Chronic Lyme Coma

This chronic disease thing is interesting; on one hand you have days (weeks, months, years…) where you live in kind of a haze, out of touch and not quite yourself (even though you may “look fine” to others). Survival mode as I call is just where you are clinging day to day, surviving, getting by. In that way time just sort of passes you by and even though everything you are missing out on hurts, you are sort of numb to it at the same time.Then you have times where are doing a bit better and get your head above water so-to-speak. These times can be hopeful and wonderful and amazing! And yet you can in these times experience the deep pain of loss and loneliness for everything and everyone you have missed out on in your life. So moments of “life” can be very bitter sweet, and depending on how you handle them, can be even more painful than the drudgery of malaise. 

Does anyone else experience this? Where you could almost want to bury your head in the sand again because you feel the pain so acutely of lost time, lost experiences, lost love…. Things unattainable that have passed you by?

It is a fight to live through chronic illness and (I find) it is a fight to come back out of it. I wonder how many people have this experience?

It’s like your body and mind are in a certain gear, and I know having learned about neuropathways that they can be very hard to change, especially with habits, addictions, lifestyles and living a certain way for a long time. But it can be done, so does anyone else who is actually escaping the grip of death by spirochete feel like they have to go through a recovery process and learn how to live?


#lyme #chroniclyme #isolation #loss

Weariness Sometimes Means Asking To Lean On Others

I made a decision recently to open my own Youcaring fund. It wasn’t easy and for some reason it feels embarrassing and like a defeat. But I came to the decision after a restless night of little sleep as I lay bombarded with worries and bills floating around in my head. 

This last year has certainly had its ups and downs and I know the long-term Lymies can relate. You hit the good times that can last days, weeks or maybe even months and you try and tackle more in your life; dust off your ambitions, work more (in my case try and supplement my job trying to do some temp work), exercise, socialize and get a taste of normalcy, which you always think will last. It’s not symptom-free, but better. Then inevitably something makes you crash again and the fatigue gets worse, the living in a fog, the pain, the systemic reactivity, “…..” Fill in the blank with whatever other symptoms. 

So often at work I will inevitably at some point say I’m tired. My one coworker commented the last time “you’re always tired”. Well, that’s true. Tired it seems is as much a part of who I am as my hair color. The only change is in degree. 

Where was I going with this? Oh yes, needing some help. This year my job description got changed to part-time, prompted by my request in January when I was having heart troubles and some other things going on causing me to just not be able to keep working full time. This has been a huge blessing and has given me some much needed balance and rest. What seems to be hardest on my body is long hours and not enough sleep. This is more taxing than almost anything. But, as much as this has been a blessing I do have bills and financial responsibilities to say nothing of all the special diet needs and the fact that our family of four Lymies medical expenses has passed the 300,000 mark. The financial stress has been almost as bad as the disease itself and I have found that my personal financial situation has deteriorated to the point that it is causing me sleepless nights and a lot of tearful prayer. 

What has been hard is the guilt I feel; on my worst days when my physical condition magnifies my mental state into an unhealthy place, I truly feel that it would be better if I were dead and not be the black hole that I am; draining money, joy and basically just being a waste of space. I HATE how lazy I feel most of the time. But, that said I am aware that I do desire to do more; to work harder, to contribute… And I really hope that time is soon. I hope soon, soon, soon the good days will just keep continuing. I won’t go deep into my medical treatment right now because that would be a long post in itself. But I am on a new treatment regimen.

Where was I going with this? Oh yes, needing help. 😜 so here I am, in a tough spot, still in treatment, better than a year ago but not there yet. So I am with a humble heart opening a fund to help with survival, believing that one day I will be able to live my dream and pay it forward and start a grant organization to help Lymies with their treatment. Until then, I will humbly ask. 

Jennifer’s Lyme Fund
My buddy today πŸ™‚  

 

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