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 (๐Ÿ˜ก) 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 ๐Ÿ™‚

The swollen foot escaped!



The pants that love you back โค (not my butt ๐Ÿ˜‰)

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. ๐Ÿ˜œ 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 ๐Ÿ™‚  

 

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 canโ€™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

Is Lyme The 5th Dimension? Or, The Facets of Fatigue

I woke up just a little bit ago from what has become the usual afternoon nap, feeling heavy, toxic, groggy and doped up. I have that lingering feeling of fatigue that sleep does not seem to reach.

When did I become a napper? Even in the worst of my Lyme I have never been a person who can sleep well in the middle of the day; that constant buzzing brain activity keeping me awake no matter how tired I am….that brain that even keeps me awake during the night when my sleep-deprived body is trying to shut down. I am trying to remember when that changed, sometime within the last several weeks or months I think. I know that the last few weeks at work I spend the day caffeinating myself within an inch of my life and counting the hours until I can go home and crawl into bed.

I guess the good part is that I have also for the first time in my life (without ambien) been sleeping better at night as well. I think it is thanks to an extra dose of this little guy on top of my Zen, prescribed by my ND  

 
Who is a genius by the way. I have had trouble sleeping since my body entered this mortal toil.

In any case the Lyme journey is interesting in that you realize that there are not enough words in the English language for fatigue; I have had deep discussions with fellow Lymies on this subject and we seem to be in agreement. Fatigue is now a catagory with at least half a dozen subcategories, or levels if you will that you can start to identify by their nuances, kind of like the 10 point scale an RN gives you for pain.
*(Please note; all levels given here still fall under the catagory of “but you don’t look sick” and “you must be feeling better because you look well” by the outside world, who do not understand Invisible Illness/Pushing Through/Trying To Function Despite and My Good Day Would Be Your Sick Day.)

1. ๐Ÿ˜ Meh. Getting by, managing, functioning, but underlying malaise and general apathy which can easily be disguised and overcome with a smile. 
2.๐Ÿ˜• Bleh. Very much like level one but more underlying sleepiness, heavy limbs, still functioning but it is like wading through mud.

3. ๐Ÿ˜’Whahh. Insert all of the above only into limited hours of the day. May possibly spend most of the day resting, sleeping, being “lazy” to then emerge magically into Bleh or Meh for work or other activities.

4.๐Ÿ˜‘ —–. Malaise, fatigue, walking zombie. Going through the motions, functioning (sort of ) in that you can get your body in motion and move through survival mode, but you promise no one that you will remember any of this….

5. ๐Ÿ˜ต whonk. No I don’t know what that word means, but it sounds like something hitting the floor. This is a day when you sit on your bed until one in the afternoon willing yourself to stand up, trying to work up enough moxie to just get yourself into the shower. I’m not sure if it’s because of POTS or not but I hit “whonk” fairly often right after a bath when I have drained the tub and have to stand up again. I look forlornly up at my towel and robe and standing back up just seems like too much effort. For Lymies whonk days are the days in between Meh, Bleh, Whahh and —-. These are the days you don’t see us, the days we bail on social plans last minute because our shoes are across the room and mock us with the distance. Remember even though we usually “look fine” and can pretty much overcome some Meh and Bleh days you don’t get to see us when we’re whonked, and we think the greatest invention in the history of the universe is the tv remote because it involves minimal movement and provides maximum entertainment.
So I hope you enjoyed my little off-the-cuff fatigue chart. Please note that any day can contain any of the above or combinations and anything in-between. Also please note that friends and family observing the functioning Lymie may not realize that even through we look fine, strange behavior, inappropriate responses, seemingly anti-social behavior, or just plain quietness or unresponsiveness can more than likely be attributed to the above. I know sometimes I will think back and realize I didn’t answer that person, or realize I spoke inappropriately or just came off dumb or unfriendly. It happens. We still love you, we still care, life is  just getting filtered through Meh-Whonk. 
My nap buddy โ˜บ๏ธ 

 

Magic Beans

Jumping right back into work without rest after my trip plus having all my edema and systemic reactions has been terribly fatiguing. Here I am needing to be super strict with my diet again and needing to cleanse, restore and calm down histamine and mast cell stuff, and/or iGg, and yet fatigue at work has been so bad that 24oz matcha lattes, energy drinks and regular tea aren’t helping to peel my face off my desk.

Even though I’m iGg reactive to both coffee and chocolate I have again been relying on “magic beans” this week just to get me through. Alas riding the wake of wakefulness (ha ha) are swelling, tingling and pain ๐Ÿ˜ฆย ย  I can also feel adrenal fatigue from being shot up with so much caffeine.

Hopefully I can get back on track soon and let the only magic beans in my life be the beanstock growing kind.

cacao and coffee

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