Tuesday, April 30, 2013

The Positive Post aka "I Get By With a Little Help From My Friends."

After I announced that my next post would be positive, and I PROMISED, I promptly had a no good, very bad day. It appears, like Alice, I have fallen down the proverbial rabbit hole, although Medicare calls it the "doughnut hole." Nice. I can't even eat doughnuts.

So I struggled. What on EARTH would I talk about? I turned to one of my favorite groups of women and posed the very question, "What's positive about Lyme Disease? I said I'd write something positive. What do I do?" There was a whooole lot silence. Finally someone volunteered, "I'm going to need to think about that." More silence. More silence. And then finally, one of the group cheerleaders said, "I appreciate the simple things in life more than I used to." There was RAPID agreement.

As I hung out w/them a little bit longer last night I watched one member voice a fear and several rally to encourage her ... one who has even shared the same procedure with much relief. There was some more discussion of a variety of things and then one by one we left for our evening routines. But as always ... someone said, "THANKS! I love you guys!" And that's what positive about Lyme Disease. Love. Or, more precisely, the ability to recognize it, give it, and receive it.

Along the road to recovery we lose a LOT of love in forms we once found it. We are disbelieved, struggle to explain, and are smacked down again. We use our canes/crutches/wheelchairs to pull ourselves back up only to be dealt another blow. A deep friendship is gone. A parent bows out. A spouse/partner leaves. Ironically what the Chronically Living need MOST is to be Chronically Loved. So we love on each other. A broken, tattered field of warriors crawling toward each other with fingers extended. "HERE, touch me. I'm HERE. Touch me. Hold on. Really. I won't let go. Hold on."

I am blessed with some incredible traveling companions for the journey. All are different, yet each fills a different need of mine and I pray I am able to give back to them. While sometimes it seems to flow uphill, in the end, it all just flows.

I belong to several groups or organizations of Lyme patients. In one we are all survivors of other groups ... either by our own decision or not. And like the walking wounded, we gravitated towards each other. I was contacted by a complete stranger after being the target of some misdirected rage. All she asked was, "Are you ok?" Well, NO, I was not ok!!! I was HURT. We spoke by phone the next night and I sobbed out my entire life's story to a complete stranger. She listened gently and responded with something like, "Of course you're hurt and no, I don't understand either. It will be ok."

The next day I received a PM from a woman I'd never heard of, asking me the same thing. "Are you ok?" NO! I am NOT ok. More sympathetic murmurings, more reassurance that I hadn't done anything wrong and to let it go. LET IT GO!?!? Over time this woman and I became very close friends and we Skype regularly. Sometimes she's sobbing and sometimes I am. Sometimes she's the cheerleader and sometimes it's my job. We've toured each others homes via Skype and gone over our med/supplement/food regimes with each other. I've waved at her husband and one of her children. She knows all about each of mine. I watch her let her dogs out. She sees Larry. There are times when one of us says to the other, "I am SOOOO sorry to bother you. You must think I'm a BIG BABY" and the other says either, "No, you're not" or "Ok, we'll be big babies together."

Do we hurt less? No. But we hurt together. Nothing says "real" like watching another person in pain gasping and grasping for something to hold on to. And what do many Lyme patients do? We wiggle our fingers and inch closer to each other. We frequently say things like, "If only we could all be lying on couches in the same room. Taking turns bringing each other food, or meds. Watching 'The Big Bang Theory.' Yeah. What do you want to watch?" These are STRANGERS. Intimate strangers.

WHO ARE WE? Art directors. CEOs. Social workers. Psychologists. School psychologists. Teachers. Former models. Engineers. Scientists. Lawyers. Public service workers. We are each of us, we are all of us. We span all ages, political affiliations, religions (or not), socioeconomic statuses, and personal lives. These people love me. ME. And I love them. LOVE.

I really can't go into the others much as I don't want to divulge any privacy (HEPPA form? Did you fill out the HEPPA form???) but I love my peeps and my ladies. I can ask ANYTHING of ANYONE and get a straight answer ... and I'll shoot one right back at them. In the beginning I was afraid of sounding "stupid"or asking something that had been asked 1,000,000 times before, but I had missed the post. I've become well acquainted with the search function of many a site and try to do my homework first. But if I'm particularly foggy someone will give me a piggy back ride through that pea soup and sometimes I carry them. Sometimes "we" remind me of the movie "Defiance." No Lyme Patient Left Behind.

We joke. Oooooh, our humor is DARK. But it's humor. Sometimes I laugh so hard I have tears running down my face. WHY? Because I KNOW what someone meant when they described a certain yoga pose they could not hold. WHY? Because just the day before I disgusted myself with my own body's inability to do the SAME ONE. We mourn together. Cry for each other. Pray for each other. Send "light and love." Hug each other. We circle the wagons.

We get by with a little help from our friends. A LOT of help. A lot of love. The healthy should be so blessed.

Sunday, April 28, 2013

Emotions and the Lyme Patient: Part 2 - The Real Deal

Now that I've written about grief and had a tiny public meltdown I think we're ready ... the scene has been set.

Again, to depersonalize a little I'll have to go into list mode. BTW, depersonalization can be a GOOD thing ... it's the body and mind's way of setting emotions aside for a bit until they're up for the challenge. That being said, I don't think I'd work on becoming an expert in it. (It's encountered a lot in those with PSTD. Wait. Chronically Living might put one in that category. I'm going to need to think about that more.)

Anger: Yeah, this is part of the stages of grief but it's not ONLY dealt with while grieving. Sometimes we're just ANGRY. For those suffering with and/or recovering from Lyme Disease there are actual medical reasons for this. Spirochetes are busy drilling away in our heads and this wrecks havoc on our emotions. I have not experienced "Lyme Rage" but can say I'm a whooooole lot more "snippy" than I used to be. Sure, things bothered me when I was healthy; but I either blew it off, sweat it out on my treadmill, or chewed on it until I could swallow it. Not so much anymore. I've noticed it's harder for me to internalize anger than when I was healthy. While I have NOT punched or cussed anyone out, I've noticed that I have the occasional desire to do so. Sometimes I yell at them in my head or talk it through with someone (most helpful!) Although on a particularly wintery day I came upon a man w/out a disability tag or license plate hovering in a highly coveted disability parking spot while his wife ran into the store. As I trudged through the snow to my own car, I passed him and loudly suggested he "man up." Ok. I've never used that phrase in my life before. Ever. I must have used it because my former students, fourth graders, often did. There was an "exchange." When he sarcastically asked if I was going to call the police I actually whipped out my phone. Whoa. Never done THAT before either. Although I don't remember it, a friend says he was concerned the rather large angry man was going for his car door. I do remember my friend stepped between the car and me. Does this mean I was acting like a ten year old? Well, yes. Yes, it probably does. I'm going to blame the undiagnosed spirochetes for the car incident, but now that I have a diagnosis I'm more aware of my responsibility to keep my cool. Even if I have to count to 1,000,000, or roll my eyes, or just spin on my heel and walk away.

However, there cases of Lyme Rage that involve violence, including domestic violence. My totally off the wall, coming out of nowhere guess on this is that those who have anger issues previous to Lyme are more vulnerable to potential Lyme Rage. JUST A THOUGHT. The good news for Lyme patients is that intense negative emotions, including rage, lessen or are eliminated with treatment.

Anxiety: The Chronically Living can get some pretty bizarro symptoms that WE don't even recognize as symptoms. Some may affect thinking and some produce anxiety all on their own. Those who are anxiety prone are always on guard, wondering when and from what direction the next bell jar will descend. Will the trigger be recognizable? Will they be in public? Will they be embarrassed? The symptoms of anxiety can range from a feeling of unwellness, to a vague sense of impending doom, sweating, trembling, difficulties with breathing, and/or rapid heartbeat. For starters. There are many of the Chronically Living that actually think they're losing their minds, having heart attacks, strokes, and experience symptoms that mimic life threatening conditions. Responsibly they go to the ER where they are pronounced, "fine."

FINE? Not.

Confusion: Two things: confusion and cognitive impairment (I, myself, bear the latter label.) The number one rule among the Chronically Living is to question everything. "Are you sure I'm not crazy?" "What if my diagnosis is wrong?" "What if I AM crazy?" "What if I can't do it?" "I can't even think straight anymore." Even though our brains and emotions may feel like jello we present with a stiff upper lip and a smile on our faces. Not an easy feat. We do it for you, the healthy. Amongst our own we cry, hug, laugh ... and at times get a glimpse that maybe we've been stripped of everything but the joy of being understood by another human being. Even if it's "only" one who Lives Chronically.

Cognitive impairment is a different issue. This leaves us standing in the middle of the room wondering why we're there. No, it's not aging, and not we're not experiencing existential despair. We just can't remember why we're there. Literally. I have left laundry in the washing machine to mold, forgotten I was cooking, or filling the tub, or where I'm going while driving. Fortunately those days appear to be behind me most of the time, and should continue to improve with treatment, but many of the Chronically Living do not regain what they've lost. We feel ashamed of ourselves. Two major areas: spelling and math. I won't tell you how this former math teacher responded when asked to count backwards from 100 by seven's ... but it wasn't pretty.

Envy: Ever single human on the face of the earth deals with envy from time to time. It's not that the Chronically Living want to steal your joy/bliss/whatever ... you define that for yourselves, it's just that we wish WE could be normal, too! Truth. I envy my 85 year old mother who has more energy than I do. I'm envious when I hear people complaining about all the errands they ran on a given day. Or the "spring clean up" yard work. Or that grueling drive back from spring vacation in Florida. Yeah. I'm envious.

Typically the Chronically Living tend to be comparatively chronically poorer. For those of us who prided ourselves in our ability to provide for ourselves this is a Real Hit. Not only can we not afford our medical treatment/s, but we certainly can't afford all the things that would make Chronically Living a lot easier, let alone "fun" things. If I cogitate on this one too much I slide back into grief. I devalue myself which leaves me not liking myself very much.

WHERE ARE YOU, ROBIN WILLIAMS. Please tell me one more time it's not my fault!

Again, part of the stages of grief, but sometimes a very real medical component of chronic illness. How we wish we could just "snap out of it," or get busy with a project. Usually we're too tired to do much of anything let alone having to break down the steps necessary to accomplish a "project." My oldest grandchild was born in January and I still don't have his quilt even DESIGNED. I do now own graph paper and colored pencils though. Baby steps. Baby steps toward Mr. My Baby.

The Chronically Living deal with depression surrounding being "sick" all the time, the inability to function normally - feeling so limited. What to do? What to do? The first line of defense for ANY body, and I do mean that literally, is a healthy diet. Not what's healthy for YOU but what's healthy for an individual patient. But more about diet in another post. For those who are able to exercise it's highly suggested. I'm working my way through a "Yoga in Healthcare" DVD. I'm in process. I'm a Believer so I pray, read when I can, or meditate on the ways G-d has provided for me in the past. I'd like to tell you I stick to a regularly scheduled disciplined spiritual life, but I don't. Not to be irreverent or anything, but I only do so when the spirit moves me. I also try not to obsess/feel guilty when feeling down ... there is nothing innately wrong with being down when Chronically Living. Counseling? Yes, please. Medications? At times medication is highly recommended and absolutely the right step to take. Being on antidepressants is not a character flaw. It's a strength to recognize what one needs.

Discouragement: I'm on Pinterest and have read all the motivational "pins" possible. Sorry, Nike, I just can't do it. Pretty much any of it. I've spent years reading research, tried ever single suggestion, pushed myself, "paced" myself by letting myself rest and NOTHING seems to make much difference. Taking care of myself is a full time job, one that others have told me is selfish (now that's enough to provoke some serious Lyme Rage!) I get most discouraged when I've put hope or expectations in things or people who let me down.

Fear: This is a big issue. Many chronic illnesses are difficult to diagnose and the process can be PAINFULLY slow. (Like decades.) The symptoms are so many, so varied, so weird, and often mimic other serious illnesses. It's hard to imagine one can be this sick and not die. For the Chronically Living there is the fear of always being in pain and unable to handle it. There is the fear of rejection, poverty, and the very real fear that one might die before being diagnosed. Upon becoming so disabled I could barely lift my head, a friend used to regularly drop off cases of water and some canned chicken for me every few weeks. Recently she told my doctor that each time she left she wondered if it would be the last she'd see me alive and/or if she'd be the one to find me dead. To be honest, I used to worry about my youngest son finding me dead ... and what burden THAT would be for him to bear for the rest of his life. But the beat goes on, I'm still here, and on the road to healing.

Loneliness: There are no words for the loneliness felt by the Chronically Living. Even those in marriages/partnerships or at home with family are lonely. Don't get me wrong, in general I LOVE being alone, but loneliness and aloneness are two different beasts. We feel both. Thanks to the wonders of the internet I am "friends" with some amazing people w/whom I share a diagnosis. We support each other, encourage each other, and share educational info. as well as personal tips for improved quality of life. But we are all still very much alone in our own bodies. A friend might be literally screaming in pain from a migraine. What can I REALLY offer? Some encouraging words and an emoticon or two? Yeah, that's pretty much it. It DOES help to know others understand, but the bottom line is that she's in her body and I'm in mine. Now matter how much I want to comfort her, I just can't climb in there with her.

Then there is the loneliness. We. Are. So. Lonely. Frequently we are no longer able to participate in pretty much anything. We have been labelled as "unreliable" due to our illnesses. This breaks our hearts as many of us have spent our lives being the reliable one in given situation. It's difficult to attend social functions and it's only natural that friends fall away. We understand, and rationally it makes sense. We. Are. So. Lonely. What do we have to talk about with others? No hobbies, no relationships, a lot of the Chronically Living are no longer working, marriages and partnerships frequently dissolve. We. Are. So. Lonely. Over time the Chronically Living drift further and further apart from the "real" world. There are days on end without a literal change in scenery. Yes, this is why I'm so crazy about the bucolic views from my windows. Visits from family and friends are exhausting although so very welcomed! I was fortunate to eat brunch with The Lawyer and The School Psychologist yesterday. I felt painfully aware of my perceived decline in social skills. But because I love them, and they me, I am confident we will all look back at this time in my life as a hurdle we crossed together. DARN. Now I'm all teary ... I love them both so much!

Grief: Please refer to a previous blog post on the stages of grieving.

Rejection: The Chronically Living frequently deal with feelings of rejection. Living in a society that values productivity can lead to feelings of worthlessness. Many people define their self worth by their accomplishments. Days that I'm able to get out and do an errand count as a HUGE accomplishment for me. To others it's done w/out a thought except maybe one of imposition. Oh, to be healthy enough not to worry about running out of energy in the middle of a grocery store! Frequently the Chronically Living make easy targets for others. Our own boundaries are weakened, we're lonely and we don't always recognize when we're continually on the giving end of a relationship. We easily become "dumping grounds," supposedly grateful for the contact. Yeah. No thanks. I understand that Chronically Living makes some healthy people feel threatened or afraid. If it could happen to me it could happen to you. And believe me, it could. You can't catch my disease from me any more than you could from the person you sit next to at work, on the train, or stand in line next to at the grocery store. You talk to them ... please don't reject us because of our illnesses.

And, to be fair, sometimes the Chronically Living reject others out of the age old adage of "it's better to leave than be left." I, for one, am guilty of this. I'd rather acknowledge the inevitable and spare myself the grief of being left again. It's an odd dance. Just yesterday I left a Facebook group that is closing soon. Why leave early? So I don't have to hang around and watch the goodbyes. I'd rather leave on my own terms. We don't get to control much ... sometimes "leave group" is as good as it gets.

Shame: It's tough to think that I am proud of my accomplishments, but I am. I've won some hard fought battles. I'm not just a survivor but an overcomer ... a victor in so many areas of life. And yet I feel shame that, for right now, those days are behind me. In the "what did you do" conversations of life, "taking a shower" doesn't really count for much. We're ashamed that we took our healthy days for granted as do pretty much all healthy people. We're ashamed that we complained about our jobs, being "overloaded" with responsibilities for which we now long. We hang our heads In Shame.

Weariness: Sometimes we're just plain old weary. This is more than the than crushing fatigue chronic illness can cause. We are weary to our very bones. We are weary in our spirits. Symptoms don't let up, doctors don't understand, people are unintentionally insensitive. Yeah, we get weary. Really weary.

We live in a society in which one of the first things people ask is "what do you do?" And they mean, "for a living." Stay- at-home-moms and those who have never "had" to work feel guilt and worthless over this one. Yeah. This isn't even close to that, and as a one time stay-at-home mom I know the reality of the differences. Many of the Chronically Living don't have the strength or energy to even accomplish ordinary household chores let alone hold a job. So the whole "what do you do" question can literally be a jaw dropper. One I had to prepare for. My response is now, "I am healing from Lyme Disease" but for a long time I found myself scrambling for appropriate responses. For awhile I did the "I'm retired" only to be asked why I retired so young. Whoops. Time to find a new tactic. What is our worth? We're not the people we used to be and we never will be. This isn't a bad thing long term, but living in the moment can make it challenging. I struggle with feeling "needy" and I DO need help. But I do NOT enjoy feeling needy and unable to do what I used to with one hand tied behind my back. At times I wonder, what do I have to offer others? Really. Why would anyone even want to hang out with me when sometimes even I don't even like hanging out with myself!

I came up with a list I keep by my bed.

* I'm a child of G-d (oh, Desiderata!)
* I'm honest.
* I'm funny.
* I'm a loyal friend.
* A good parent.
* I'm a good PERSON.

And it goes on for quite awhile ... I read it as often as I need to. In fact, the paper got so crinkly I scanned it into my computer/phone for quick access in case of emergency. There are many crisis' of the Chronically Living soul.

There you have it ... A to Z, or at least W. There are many, many more emotions that come and go with a flicker of a memory; a "trigger" of some sort ... a song, a fragrance, a photograph. It's like grief, a veritable Hotel California ... one the Chronically Living can never leave.

Next post? Something POSITIVE. I promise!

Saturday, April 27, 2013

Emotions and the Lyme Patient: Part 1

Too sad to write this morning ... grieving on multiple levels. Odd that I wasn't until AFTER I wrote yesterday.

Hmmm. Like a tidal wave.

I'll try it again tomorrow. Live gently? Please?

Thursday, April 25, 2013

The Stages of Grieving Chronic Illness

Good grief.

For real.

Without grieving there is no moving forward; no coming out of the tailspin of a devastating diagnosis.

No one does it better than Elisabeth Kubler Ross, whose life work revolved around grief and its five stages. "On Death and Dying" remains a classic. While a lot of her work focuses on actual physical death and the loss of a loved one, the Chronically Living cycle through this as well.

The stages of grief are "simple" enough to last a lifetime.

1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance

If only it were as easy as a five point checklist and one were able to cross off each step when finished, and move on to the next in an orderly fashion. Yeah. No. It doesn't work that way. People often think of the stages as lasting weeks or months. They forget that the stages are responses to feelings that can last for minutes or hours as we flip in and out of one and then another. We may feel one, then another, and back again to the first one. All within a nanosecond.

1. Denial -

"This first stage of grieving helps us to survive the loss. In this stage, the world becomes meaningless and overwhelming. Life makes no sense. We are in a state of shock and denial. We go numb. We wonder how we can go on, if we can go on, why we should go on. We try to find a way to simply get through each day. Denial and shock help us to cope and make survival possible. Denial helps us to pace our feelings of grief. There is a grace in denial. It is nature’s way of letting in only as much as we can handle."

We've all been there in one way or another. After the death of a parent/grandparent/sibling/spouse. Upon finding out one's marriage is not salvageable. The loss of a job/income/home.

Personally, I have said the following things either out loud or in my head when I've received bad news. I mean bad news. Life changing news.

* NO!
* This can't be happening.
* That's unacceptable.
* I refuse to believe that.
* Are you SURE?


2. Anger

"Anger is a necessary stage of the healing process. Be willing to feel your anger, even though it may seem endless. The more you truly feel it, the more it will begin to dissipate and the more you will heal. There are many other emotions under the anger and you will get to them in time, but anger is the emotion we are most used to managing. The truth is that anger has no limits. It can extend not only to your friends, the doctors, your family, and yourself, but also to God. You may ask, “Where is God in this?

Underneath anger is pain, your pain."

Truth: anger scares me. While others' anger leaves me shaking, my own anger can feel like it will consume me. Sometimes denial is a whooole lot easier. But not a good place to stay. Two local psychologists have been very helpful to me in this area as well as some dear friends. I'm not going to kid you, nor bore you with the details, but my life has not been easy. I've had a lot to grieve as an adult making myself at home in the world (thank you, Joyce Maynard!) I can get stuck in anger; cataloging all sorts of perceived injustices. Is it helpful to me? Yes, and no. Yes, in the sense that I know what I'm working with. No, in the sense that looking at the list makes me ANGRY. Or, in reality, I feel pain. Deep, long lasting pain. Bereft. So thanks, Dr. G. and Dr. H ... you've brought me further than I had ever imagined possible, but ultimately this is a path I walk alone. I'm thankful that G-d has given me the strength to acknowledge my losses. And, yeah, scars heal over but they're still visible. For years after a C-section every time I leaned up against my kitchen sink I'd hit that "sweet spot" ... the one no doctor ever tells you will stay w/you. In the beginning I'd HURT when I hit it accidentally, but as time went on and my son grew older I'd twinge and think of how much I love him and how thankful I am he exists. It doesn't hurt me at all anymore and hasn't for decades, but there are times when showering I look down at it, smile, and say "hey, sweet pea!!!" Not that I'm imagining ever thinking lovingly of chronic illness, but there are lessons to be learned in the trenches. Lessons "healthy people" may not necessarily have the opportunity to receive. Don't I feel special. Yeah, sometimes I actually do.


"After a loss, bargaining may take the form of a temporary truce. “What if I devote the rest of my life to helping others? Then can I wake up and realize this has all been a bad dream?”

We become lost in a maze of “If only …” or “What if …” statements. We want life returned to what is was; we want to go back in time, recognize the illness more quickly; if only, if only, if only. Guilt is often bargaining's companion. The “if onlys” cause us to find fault in ourselves and what we “think” we could have done differently. We may even bargain with the pain. We will do anything not to feel the pain of the loss or losses. We want to remain in the past, trying to negotiate our way out of the hurt."

Think Robin Williams to Matt Damon in "Good Will Hunting: "It's not your fault. It's not your fault. It's not your fault."

Only when I was able to realize that I didn't "deserve" to be bitten by an infected tick, and the fact that my body was run down was a reflection of my circumstances and not some cosmic or personal act of will, was I was able to stop w/the guilt and self blame. I don't bargain about my illness too much anymore, but I still find myself revisiting the concept from time to time. We all do.


"After bargaining, our attention moves squarely into the present. Empty feelings present themselves, and grief enters our lives on a deeper level, deeper than we ever imagined. This depressive stage feels as though it will last forever. It’s important to understand that this depression is not a sign of mental illness. It is the appropriate response to a great loss. We withdraw from life, left in a fog of intense sadness, wondering, perhaps, if there is any point in going on alone? Why go on at all? Depression after a loss is too often seen as unnatural: a state to be fixed, something to snap out of. The first question to ask yourself is whether or not the situation you’re in is actually depressing. The loss of a loved one is a very depressing situation, and depression is a normal and appropriate response. To not experience depression after a monumental loss would be unusual. When a loss fully settles in your soul, the realization that your (fill in the blank) is gone and is not coming back is understandably, depressing. If grief is a process of healing, then depression is one of the many necessary steps along the way."

Let there be no mistake, having to stare a chronic illness in the face is circumstantially depressing. NOT to be sad, anxious, and depressed is to be mentally ill. (This is where "What not to say to the Chronically Living" kicks in. Do not tell us to see one more doctor, try another antidepressant/anti-anxiety med or whatever. Unless you are a medical doctor with a degree in the area of our illness, please keep all your inexperienced and uneducated thoughts to yourself. Really. You're not helping us. You're HURTING us ... and then we have to grieve THAT. Not to be harsh ... just to be clear.)

Yes, that would be just a little bit of anger speaking.


"Acceptance is often confused with the notion of being “all right” or “OK” with what has happened. This stage is about accepting reality and recognizing that this new reality is the permanent/current reality. We will never like this reality or make it OK, but eventually we accept it. We learn to live with it. It is the new norm with which we must learn to live. In time, through bits and pieces of acceptance, however, we see that we cannot maintain the past intact. It has been forever changed and we must readjust. We must learn to reorganize roles, re-assign them to others, or take them on ourselves.

Finding acceptance may be just having more good days than bad ones."

Even if they're just inside our heads.

There are times when I think I've accepted my chronic state and then times when I try and figure out ways to sue about 30 doctors. Huh. Anger. Pain. There are times I still think, "I bet I've learned enough now, huh G-d?" Bargaining.

This blog is a giant step toward my own acceptance of my situation. I may be down, but don't count me out.

Sleep well. Maybe tomorrow I'll talk about the emotions we encounter along the way .. sometimes all at once just like the stages of grief. A tidal wave.

Reference: http://grief.com/the-five-stages-of-grief/

Wednesday, April 24, 2013

A Day in the Life of a Lyme Patient

I will say this, I always have amazing intentions and since being in treatment (tx!!!) I'm having more and more spurts of motivation. A spurt, however, does not an action make. It's more like a "WOW, I should do THIS!" and then I have to go lie down for an hour.

Today I woke up REALLY encouraged for a variety of reasons, and was determined to fit in ALL my Lyme goodness. But what I keep forgetting is that my former 24/7 "get up and go" no longer exists. Now I'm more like an "I'll think about it. Maybe. What did you say? No. What were we just talking about? No. I don't want to ... what??? I SAID that? Oh. I probably did, huh. Wow. I have NO memory of that. Fair enough. I have no memory of pretty much anything." Yeah. My kids make jokes that I can always watch previous seasons of "Breaking Bad" again and again and be gloriously horrified every time I watch it. "Law and Order?" Yeah, I could quote entire episodes now.

But I did get in the meds, some YOGA, the amazingly and completely exhausting detox bath, and two meals. Two out of three ain't bad. And then I remembered ... I needed to empty the garbage and change the cat box. Larry's been complaining for a week now and when I looked in at it I actually apologized to him. So today I accomplished things that take other people a couple of hours and it took me six. Really.

About the yoga. In fairness to myself, while it was labelled for beginners it was NOT labelled for the incredibly deconditioned. Really. In many areas I have retained my former levels of flexibility (go, muscle memory) yet at some points I just watched this relatively young woman do things that I couldn't even figure out. Makes the Hokey Pokey look like child's play. Yup. That might have to suffice for humor this evening.

I will say I do not feel like a Bad Ass Lyme Warrior tonight. I feel all kinds of Babesia sweaty and absolutely ready to get off the roller coaster. I don't feel exactly defeated, yet I'm very aware that that I'm five weeks into a 156 week program. Not exactly half way and "coming out the other side." I hear the first four months are the toughest ... I'm 1/4 way through that! PLUS, I have NOTHING even remotely funny to say.

And people are being snarky on Lyme forums tonight. Full moon.

Stages of Grieving might be on deck. Either that or The Chronically Living and Emotions.

I'm kind feeling both right now.

I'm going to bed.

Tuesday, April 23, 2013

And Sometimes Life Just Happens -

Yesterday I made a schedule so I could make sure I could accomplish all I need to do to be a "compliant" patient and fit everything that needs to be done into a timely fashion. (Because really and truly, there are drug interactions to consider!)

What I forgot is that LIFE happens during treatment! There are phone calls to answer, bills to be paid, garbage to be taken out, cat boxes to empty, friends to chat with, laundry, dishes, grocery shopping, and the ever familiar weekly or bi-weekly medical appointment. I try to multi-task so that I can be frugal both on gas and my energy, and try to fit in an errand when I have an appointment whenever I can.

I will admit I messed up from the get go. Forgot to drink "the shake" for breakfast. Ok. Grace. Grace. Extending grace. Remembered to bring my 10:00 meds to my appointment and didn't even feel weird about whipping them out and gulping them down (although I think I've now sufficiently learned that "gulped" pills do not a happy stomach make.)

I've had some MAJOR issues going on in my life and I've been trying to make peace with some situations such that I am able to respond in a way that makes ME comfortable w/out causing another too much stress. It's really all a variation on the theme of letting go and acceptance, although the hopes/dreams/names of the not-so-innocent change as the situation warrants. I will say being among the Chronically Living has greatly impacted the amount of drama I can handle (very little) and my "bullsh*t quotient," which is now also quite low.

After my appointment I went to the grocery store and noticed how QUICKLY I could shop. Organic produce. Apple cider vinegar. Wild caught fish. OH. And two 2X weekly pill boxes; one green (day) and one blue (night.) I erroneously planned on every month being the February of Leap Year, and only had enough boxes for 28 days. Problem solved. When I load up next month's worth of supplements this weekend I'll be much more prepared and, therefore, much less frantic. I probably won't even cry this time. I was actually rather proud of myself as I'm branching out and trying new salad veggies in my daily "Immunity Salad." And, to be honest, organic veggies are REALLY cool looking. They actually look like they came out of a garden and have green leaves on them and everything (carrots and beets.) I rather smugly lined up to pay for my items while perusing the carts of those around me. Salty snack foods, cookies, beer, cigs, boxed Mac and Cheese and the ever popular Ramen Noodles. CLEARLY these people had never heard the benefits of HEALTHY eating. And then I did that, "STOP, bad thoughts, STOP" thing in my head, because the truth is ... until recent blood work for food allergies and a mandated organic diet by my LLMD, I only THOUGHT I ate a healthy diet. What I actually ate were things that OTHERS claimed were healthy foods. Ok, maybe for them, but certainly not for me! So, inside my head I shut up rather quickly. To pass the time in a line that claimed to be "express," I looked for gum to help relieve that nasty "tin foil mouth" thanks to one of the MAJOR meds I'll be on for a very long time. Well trained now, I flipped over the pack to read the ingredients. Oh my goodness. Who knew? I'm not sure WHY I thought the back of the package would read, "gum," but it didn't. I couldn't even BEGIN to attempt to pronounce those words, even in my head. I felt defeated. I did not buy the gum.

I was blessed by a visit from a dear friend this afternoon who helped me whittle away the hours by helping me make lists (I LOVE LISTS) as well as advise me on some color/design choices for a project. She's a gifted artist and honest to a fault ... I'd have trusted her with my children and I don't say that about just everyone.

At 2:00 she reminded me to take my Activated Charcoal with 32 ounces of water. This is a new one for me so I was actually glad to have the company as I popped the pill, drank the water, and sat on the couch with my stomach sloshing.

I was going to drink "the shake" I was supposed to have at breakfast for dinner. I forgot. But I did eat a green apple and almond butter with my 7:30 meds. That counts. And while I didn't FORMALLY exercise I did walk to the mailbox and back and throughout the grocery store. That counts, too.

But what's NOT going to happen today is that I am NOT going to write about how to remove a tick! WHY? For several reasons. First of all (and pretty darned important) I'm not sure I've ever SEEN a tick let alone extract one. I did carry around a "Tick Twister" on my key chain all last summer out of sheer terror. I even watched a video online about how to use them. I purchased one for each of my sons and tried to nonchalantly do the, "Hey ... just thinking about you and got you this cool lime green Tick Twister thing." I'm pretty sure they thought I was overreacting at the very least. I'm also pretty sure they didn't affix them to their key chains. Whatev. Just don't come crying to ME asking me to dig a tick out of your navel. Ok. That was kind of some dark Chronically Living humor. I'd want them to contact me but I will admit I get squeamish just thinking about it. I'm not afraid of wounded, bleeding, broken boned youth ... but ticks? They scare me. They aren't fixed with a gentle cleaning, hydrogen peroxide, casts or band aids. Not even Super Hero ones which I refused to purchase on general principle. But I wish I had, because to kids a band aid IS healing. But I'm not going to go down the "parental regrets" path. But someday ... remind me to tell you about the Lawyer and his radio rights, or lack thereof.

Yup. I'll try and imbed a link about removing a tick. What I know is more about what NOT to do.

* Don't grab at it with tweezers.
* Don't smoke/burn them.
* Don't break them into pieces. (Like ticks break. As if.)
WHY? Because if you tick them off (ha, ha) they will literally puke their poison Lyme laden guts out into you. You do not want this.

* If possible, take a photo of it on you. (Camera phones have taken "evidence" to a whooole new level.)
* And, if possible, capture it alive and seal it up to take in for analysis.

W/out further fanfare, the Tick Twister video. I am not endorsing this product although I did have one on my key ring ... which made me feel slightly ahead of the curve "aware." And a tiny big environmentally hip. I shoulda bought the Ray Bans.

The link did not imbed.

Try this: http://www.youtube.com/watch?v=tcW3E3jNv8I

Monday, April 22, 2013

Tick Prevention: Dress Like a Dork

Although this was not on my list of possible blog posts, it occurs to me that while ticks don't DIE during the winter, we're coming into their season and consequently, ours (for those of us who are entering spring/summer.) With those joys comes risk; I would never advise fear but would heavily advocate for knowledge.

I've watched some parents with Lyme put their children's treatment needs before their own; so many go w/out so that their children have their needs met (medical or otherwise.) Although my sons are adults that Fierce Mommy Heart is always at the ready. I have only been aware of one of my sons ever having a tick, and he found it himself. I think I'm thankful for that ... I might have gone straight to the overreaction of which only parents are capable. This is well likely the reason behind the words, "Don't tell Mom." But with four of 'em, someone eventually spills their guts.

How to Keep You and Your Child/ren Safe From Ticks

There is soooo much information out there about this and some is pretty restrictive; "no going outside," while some is pretty loose; "no big deal."

It IS a big deal but I think the word du jour is "balance." I don't want my grandchildren growing up fearing ticks. I want them to have the confidence that they know how recognize them and what to do if one becomes attached. (Literally. I'm pretty sure ticks are narcissists, being parasites and all.)

Here's what's commonly suggested for keeping ticks away from your home. Remember, ticks don’t fly or jump. A tick climbs to the ends of blades of grass or weeds and waits quietly with its front legs extended until it can grab onto a passing host. <"Shhhhh, here she comes!">

Exterior of Your Home

- Create ‘tick-free’ zones around your home by cutting back wooded areas and increasing the size of open lawn.
- Move woodpiles, bird feeders and bird baths as far from your house as possible. (Birdwatchers can invest in a good pair of binoculars ... much cheaper than Lyme treatment.)
- Mice and chipmunks hide and nest in woodpiles, and eat spilled food from bird feeders. Birds can spread immature ticks over great distances as they migrate, and they may drop ticks in your yard as they use feeders and birdbaths. (Contrary to popular opinion, ticks are not required to carry passports to travel between the US and Canada or Mexico. They are afforded this same freedoms in Europe and other countries worldwide. Stealth. We're talking stealth, people.)
- Keep your lawn well mowed, to a height of 3 inches or less. This lowers the humidity at ground level, making it difficult for ticks to survive. Also, mice and other small animals hosts avoid these neatly trimmed areas because they cannot easily hide or find food and nesting
materials. (People who want riding lawnmowers now have some real justification in spousal debates.)
- Keep garbage in tightly closed cans and don’t put pet food outside or purposely attract and feed wild animals. (See the above recommendation for birdwatchers.)
- Remove brush, weeds, leaf litter, and other yard debris that attract ticks and their hosts.
- Reduce the plants in your yard that deer love to eat (such as azaleas, rhododendrons, arborvitae, and crab apple trees) and increase the plants that they don’t like (such as Colorado Blue spruce, Scotch pine, boxwood, daffodils and marigolds). Extension agencies and local nurseries can offer more suggestions for your area.
- Rake back leaf litter and cut away undergrowth several feet into the edge of any woods that are on or next to your yard. (This is on my own personal to-do list. My summer landscaping priorities have changed GREATLY while writing this!)
- Eliminate dense plant beds close to your house, such as ivy and pachysandra. (Note to self: nix the thought of a maintenance free ivy front lawn. Nix. Nix. Nix.)
- Consider fencing to keep out larger animals, such as deer, as well as neighborhood pets. Ten-foot high fences may be necessary to completely keep out deer.
- Using an electrified fence may also be helpful. (Um, no thanks. I'm gonna have to pass on "stunning" any animals.)
- Keep clotheslines high off the ground and out in the open so laundry will not touch vegetation. (Smart.)
- Keep picnic tables and lawn furniture as far from any woods, shrubs, and undergrowth as possible. (There go all those idyllic romantic visions of summer picnics under the trees RIGHT out the window.)
- Move children’s play areas as far away as possible from woods or other overgrown sites. (WAIT A MINUTE. Does this mean The Adorable Grandson and his father, The Musician, will not be getting a tepee from Safta to camp in while visiting? Probably. UGH. This reminds me of when I used to try and convince my kids that camping in the enclosed front porch was FUN! I even went so far as to light pine incense to simulate being in the woods. I wasn't tick savvy at that point ... just a mom who didn't want to have to get up at 3:00 AM and rescue a terrified kid from the wilds of an urban backyard.)
- Consider using fences to keep children from entering tick habitats.
- Create your vegetable and flower gardens in the middle of large areas of open lawn. (This isn't totally horrible. Raised beds would be a whole lot easier to access out in the open!)

Interior of Your Home

It is rare for tick infestation to occur indoors. However, this can happen if a fully fed female tick falls off a pet and lays its eggs. This may occur in a location like pet bedding, carpeting, upholstered furniture, or crevices in floors and walls. In such a case, vacuum up as many of the ticks as possible, then seal the vacuum bag inside a plastic bag and, if possible, place the sealed bag in the freezer for a couple of days to kill most of the ticks. Then dispose of said bagged bag in an outdoor trash can. Wash all removable bedding or cloth items in hot soapy water before drying them in a HOT dryer for at least 15 minutes. Ticks can survive the washing machine but die at high levels of heat. (I have a friend who recommends that all clothing worn outdoors go IMMEDIATELY into a hot drier.) Apply an appropriate pesticide to all infested areas. It is best to hire a professional pest controller to perform the pesticide treatment. More often, a single tick is carried inside on either a pet’s fur or a person’s clothing. It may then crawl onto another family member, searching for a blood meal. (Kinda makes you feel all warm and cozy inside, huh?)

Inside the home, you can reduce the potential for exposure to ticks by following these suggestions:
- Keep small animals like mice and cute fluffy kittens out of your home by closing up gaps around doors, windows, and other places.
- Check your clothing carefully for ticks before you come inside, and check your whole body once you’re indoors. (I have friends that "tick check" twice a day; once after coming in from the outdoors and again before bed. The most oft recommended suggestions include soaping up and checking all over; paying close attention to hairlines, warm dark places, and in between one's toes. Oddly, navels are a big hit with ticks. Pervs. For parents of young children this can become a routine one follows when a child comes in from playing outdoors and again at bath time. Parents of older children are well advised to respect their privacy and modesty, and teach them how to perform a tick check on themselves after coming indoors and when bathing. I have heard OUTRAGEOUSLY hysterical stories of friends tick checking each other. (The best story coming from an area doctor whose hunting buddy was bitten and developed Lyme. "Do you KNOW there are no good Lyme doctors in Michigan?" he asked outraged. I muttered, "Yeah. I heard that, too." Clearly he was not a PCP ... )

If you have pets that go outdoors:
- Groom them carefully for ticks every time they’ve been outside. (One might consider shaving them down for the summer. I hear "the puppy cut" is a real hit at the groomer's this time of year. Shaving a cat might be an issue ...)
- Designate specific sleeping areas for your pets, and check their bedding routinely for ticks that might have dropped off them while they sleep.
- Keep pets off furniture where ticks can become hidden in the fabric or cushions.
- Seek your veterinarian’s advice before using flea and tick control products on your pet or its bedding.
- Remember that exposing your pet to more than one type of treatment (flea and tick collars, dips, baths, or powders) within a short period of time might seriously harm your pet.

(It's true ... animals are more quickly treated for Lyme than humans. My Big Pharma/Insurance Companies rant is further down the list of topics to cover.)

Chemical Control Options

- Applying pesticides (chemicals that will kill ticks) should be considered only as a last resort.
- It is recommended one hire a professional pest control company to apply any pesticide products.
- Before deciding to apply pesticides, your property should be sampled for ticks. Your yard may not necessarily contain large numbers of ticks, even if you live in a county or other local area where ticks are numerous, or where there is a high rate of tick-borne disease. Sampling can be accomplished by using a ‘tick drag or flag’ (white flannel fabric attached to a pole that is dragged across, or poked into, the vegetation. Ticks, if they are present, will cling to the fabric. Believe it or not, a tick drag is kind of cool. Dress code for such an event? Dork. If tick levels are high, pesticide treatment may be justified.
- Pesticides come in both liquid and granular form. The type of vegetation in your yard and the stage of the ticks that are present will help determine what kind of product is best for your situation.
* Liquid pesticides will kill ticks that are crawling out in the open.
* Granular pesticides will penetrate leaf litter to kill ticks that are hatching, molting, or waiting out the cold weather (overwintering).
For example, for black legged ticks/deer ticks) in the northeastern and mid-Atlantic states, liquid pesticides can be used to kill nymphs in the spring, larvae in the summer, or adults in the fall. Granular pesticides will kill nymphs that are overwintering in the
fall, or larvae that are hatching from eggs in the early summer. Some pesticides are restricted for use only by licensed pesticide applicators.

Here are some of the safest pesticides that are effective for controlling ticks. All products may not be registered for use in all states.
Class of pesticides:
- Carbamates: Carbaryl
- Pyrethroids: Permethrin, deltamethrin, cyfluthrin
- Pyrethrums: Plant extracts called pyrethrins, primarily for use inside the home and on clothing.

Personal Protective Measures (see also: Dress Like a Dork)

Despite your best efforts, it may be impossible to keep your yard entirely free of ticks and their animal hosts. It is therefore important to use personal protective measures.
- Wear clothing that will prevent ticks from reaching your skin, such as long sleeves and long pants.
- Tuck your shirt into your pants, and your pant cuffs into your socks or boots.
- Use an insect repellent containing DEET (N,N, diethyl-m-toluamide) on your exposed skin. ( I have heard that DEET does NOT kill ticks.)
- Use an insect repellent containing permethrin on your clothing. (One can purchase permethrin at many major home improvement stores, hardware stores, or online on amazon.com. Clothing should be sprayed and allowed to dry BEFORE it is put on.)
- Always FOLLOW LABEL DIRECTIONS when applying repellents.
- Be sure to check your clothing and body carefully for ticks when you’ve been outdoors.

Reference: http://www.smdc.army.mil/2008/Safety/Articles/TickControlAroundTheHome.pdf
Reference: http://www.vermontlyme.org/ticks.htm

That's it for today!

In local news I saw my chiropractor who could not BELIEVE the changes in my "gut" with a month of treatment. WOOT!!! I'm adding in a "binder" beginning tomorrow to gather up any free floating toxins (including mold toxins) and send them packing. I'm looking forward to increased healing ... may the process be tolerable.

Tomorrow. How to remove a tick if one is found on one's body (or on one's child's body.) And, as always, some general frivolity.

Sunday, April 21, 2013

So What's a Healthy Person Supposed to SAY to Someone with Chronic Illness, Anyways? Really.

First of all, I think I need to figure out how to fit writing into my pretty much full time job of meds/foods/exercise/detox in all its combinations and varieties. In a weird way being in tx (treatment!) is a bit like starting a full time job. Except you're not getting paid, are paying through the NOSE because insurance doesn't cover most meds, hurt like nobody's business, and have NO sense of motivation. Except somewhere deep within me it's kind of exciting to have a reason to get up. Even when I don't want to. Healing IS my job for the next 35 months, and I've always been a very responsible knock-your-socks-off worker. Of course I was more excited when I wasn't having "symptoms" ... and I am full up today. Sore burning feet, leg breaking pain, floaters, ringing ears .... the list goes on and on (go re-read that symptoms blog post.) I know the course of tx does not always run smoothly, but I want to be able to be consistent and do MY part of this healing journey.

So to avoid yesterday's late night post I'm on a writing schedule now.

Here we go.

I'm going to try and put two categories together as one of them flows into the other and they can become intertwined at best. Sometimes it gets down right nasty. Besides, then I get to check TWO items off my list of blog topics. So we're going to look at:

* What to SAY to the Chronically Living (and equally importantly what not to.)

* How to support a former friend/former colleague/family member with Lyme.

First off ... what to say to the Chronically Living. Good grief ... I'm going to have to get emotionally personal (not my favorite thing.) We INFJs like it up there in the safety of our own heads. Whew. Growth opportunity. Growth opportunity. Ok. In order not to sob all over my keyboard I'm going to have to go into list mode and get clinical about how we feel. About how I feel about being chronically ill. Sure, I can put on a brave front and say I'm Chronically Living, but aren't we all? What we all AREN'T is dealing with chronic illness.

1. I hurt more than I can adequately express and the physical is the easy part.
- Most of my "friends" are long gone. Not that they didn't love me, but our lives just don't touch anymore.
- There are members of my family who "don't believe in" chronic Lyme. Therefore, I'm out of their lives. Think I'm kidding? I saved the letter just to remind myself WHAT issue belongs to WHO. My response is MY responsibility, that's for sure. But theirs? SO ON THEM.
- I can no longer regularly be part of a spiritual community. This is a HUGE hit for me personally as my spiritual life and faith are integral to my being.
- I have very little support of any kind: financial, emotional, or spiritual. It's hard. I do see a counselor regularly and have to remind myself that while I like him VERY much he is NOT my friend. I am his client. Boundaries. I have to keep a FIRM hand on the reality of my boundaries and those of others.

Take away: Emotionally we're devastated on multiple levels.

2. I'm scared.
- I've read all the literature. It's highly unlikely I'm going to be cured. Truth. Do I stop hoping/praying/wishing for it? No. But I can't allow myself to entertain fantasies of returning to the level of health I had previous to illness. And if I DO get better/go into long term remission? I'm going to be in my 60's. I won't be 46. Those years are gone. Not wasted, but there's no-do over as a "healthy" person. There's a lot of loss there.
- How will I take care of myself? What will happen to me? These are very real, very valid questions and ones I have to take to G-d. No human seems able to be even willing to attempt to answer that one. And even G-d just promises to never leave me. He never promised me a rose garden. Or even a roof over my head. Isaiah. I love Isaiah.

Take away: Our losses are real and irreplaceable. We will never be our former selves again. We breathe this in and out every day keeping the fear and demons at bay. Breathing in good thoughts, expelling the bad.

3. It's not fair.
- It just isn't and there's nothing more to say about that. I can hear my mother snap, "RUTH ELLEN, who ever told you life was FAIR?!" She wins. This is not being unable to go on vacation, this isn't about those amazing shoes being sold out in your size, not even about getting your car hit in a parking lot, or having a drunk run a red light and smack you across three lanes of traffic into someone's front yard. This is kind of like winning the lottery in reverse.

Take away: All together now, "it's not a fair world after all." I bet you know the tune.

4. Related to but not the same as the above: It's not our fault.
- I worked hard.
- I was a good parent.
- I was a faithful spouse.
- My "yes" meant "yes" and my "no" meant "no." I didn't take advantage of others or manipulate them.
- I volunteered within the community.

Take away: We didn't mean to get sick. We really didn't. We were you and want what you do ... time with our loved ones, fulfilling work, honest relationships. That's all.

What to Say to the Chronically Ill

- I am so sorry for your losses.
- This is not fair.
- You didn't cause this. You know that, right? No? Ok. I'll hang on to that for you right now. (IMPORTANT: Do not make us false promises in the attempt to console us. We're desperate for hope and if it's extended we'll reach for it like a life saver. To have that withdrawn cuts like a knife and leaves us floundering for the millionth time wondering if we're going to be able to make to shore.)
- How can I help?

Take away: Please stay in our lives to the best of your ability. No, our bodies don't work in the same way but we're still in there. We don't expect you to give up your lives and plans for ours, but a little assistance would be a great thing and appreciated more than you'll ever know.

What Not to Say to the Chronically Ill

- You don't LOOK sick! You look GREAT ... darn, I wish I could lose weight like you do. (No, you really don't. Just stop eating as much and start exercising. Chronic illness is not a recommended diet.)
- Yeah? Well, my mother's best friend's cousin's neighbor had the same thing and HE/SHE got better!
- How's your spiritual life? Perhaps you need prayer. Is there sin in your life?
- What'd you do? Go camping? Hiking? IN THE WOODS? (Yeah. Maybe we did. This isn't a crime. We Lyme patients were bitten by a tick. Coulda been you, dude. Coulda been you. Still could.)
- Call me if you need anything! (Sure part of this is on we, the ill,but it gets really old really fast to contact people and hear about how they can't help you because: they're going on vacation, will be at a party, are going on a girl's weekend away, are lunching with the ladies, busy with a Bible Study. Really. REALLY.)
- I think you're overreacting. Have you seen a psychiatrist/counselor? Pull it together. Snap out of it. Stop whining, I think you must LIKE being sick. What's that called anyways, there's a name for that. (Lunacy on the part of the healthy. That's what it's called. Lunacy.)

Take away: Treat us the way you'd like to be treated if you lost everything.

How to Support a Friend/Former Colleague/Family member with Lyme

Sounds similar but yet it's very different. Of course how one would support a family member is different than how one might support a former colleague but the principles are the same. Here are some things to consider saying:

- Can I stop at the grocery store for you?
- Are there any appointments I can take you to this week?
- Can I come over and chat or not chat? Just hang out? (Please don't take it personally if the answer is, "no." There are days just speaking takes excruciating effort. Convos are OUT. Please keep asking. We need you to. During visits be aware of signs of impending crashes. Watch the eyes for signs of pain or fatigue. Watch facial expressions and change in posture. Sometimes you'll need to help know when it's time to go because we really miss you.)
- Do you need any prescriptions picked up?
- (If appropriate to the relationship ...) May I pray with you?
- Make us laugh even if it makes us cry. Both are healing.
- Send the occasional card. (I have a former high school classmate who sends me random cards and when I see her name in my mailbox I get teary. What that act of kindness means to me makes me weepy as I type.)

Former Colleague
- We miss you at work. How best can we stay in touch?
- Can I come over and chat or do you feel like getting out? (Please don't take it personally if the answer is, "no." There are days just speaking takes excruciating effort. Convos are OUT. Please keep asking. We need you to. During visits be aware of signs of impending crashes. Watch the eyes for signs of pain or fatigue. Watch facial expressions and change in posture. Sometimes you'll need to help know when it's time to go.)
- Send a card from time to time. Even a post card. Knowing one has not been forgotten helps in the loneliness/disconnect category.

(I honestly think this is THE most difficult category. Colleagues are just that ... people who work/ed at the same place. Some become friends but most stay in the acquaintance zone. It's still a hit to lose the day to day passing another in a hallway. It was familiar, it was quasi-comfortable. All that's gone for us now.)

- Call/email/text/PM frequently. We miss you. (Now it's gonna get personal again.) I miss you. Not being a regular part of your lives is almost unbearable to me at times. I spend hours recounting precious moments of our times together. Even the hard ones. Please help me know that you still love me. (I had "a moment" with The Lawyer the other day via email and I kept it so I could reread his loving words when I need to hear them. And I need to hear them.)
- HUG ME even if it has to be gently. Please allow me to hug you. I really need to. (MANY studies have proved the healing power of the human touch.)
- Believe me. Believe IN me. Believe that the healthy woman you loved as a mom/sister/daughter/aunt/whatever is still in there. Believe that I have the power to go on, go forward, and spin straw into gold. Your belief in me is soooo important ... much more than that of anyone else. You're my family and I am yours. I don't want you to pity me and I don't want to be dependent on you, but I need you. Sometimes that may mean saying "no, thanks" to something you'd rather be doing and helping me. Yeah. I'd rather be healthy and doing it for myself but as noted above, "Life isn't fair."
- During visits be aware of signs of impending crashes. Learn me. Me. Look at my eyes for signs of pain or fatigue. Watch my facial expressions and changes in posture. Listen for changes in my breathing. Sometimes, despite my tears, you'll need to help me know when it's time for you to go because I really miss you and don't want you to leave. I'll probably even protest that I'm FINE. You know me ...)

Yeah, I think that's it. I recently read a great article about what not to say to those who are Chronically Living. I thought it was a balanced and interesting approach to figuring out where one fits in the equation. The visuals are GREAT.

In addition a dear friend who also Lives Chronically passed on two fabulous links. One "But You Don't Look Sick" and the other, the "Spoon Theory" that explains how the energy levels of the chronically ill work ... or don't.

Off to the detox bath. Maybe someone can leave me a comment about how to share a link. I figured out pictures yesterday but the linkage is messing w/my head. No hyperlink ... you'll need to do the tedious, old fashioned, very low tech cut and paste.


But You Don't Look Sick!


The Spoon Theory:


Testing my TechNo Skills ... (still can't sleep)

Can I get this cool picture to show up.

Apparently that did not work.

Let's try this ...



AH HA!! It's the photo icon that reads "Insert Image." OMG, too much fun. My brain has regained just a jot and tittle, but woooo hooo.

Just THINK of the fun I can have w/this new knowledge.

I wonder how I insert YouTube and sound clips. Probably the same way.

Larry is snoring. He's so subtle about his needs.

Saturday, April 20, 2013

Living La Vida Lyme

The Entrepreneur's girl friend and her mother were/are in town this weekend. I really don't have a suitable moniker for the GF, whom I love dearly. I'd call her "The Law Student" but she won't be one much longer. "The Lawyer" is already taken and "Girl Lawyer" doesn't do her justice. (Law pun intended. I'm still witty. Hedge your bets on me.) "Ms. Lawyer" is a walk on the chilly side and there is nothing chilly about how I feel about her.

Geesh. If I'm not careful this will end up being a post about HER instead of today's enlightening topic, "Traveling w/Lyme." Again. We're not talking Europe or Chicago here, boys and girls, we're talking about being away from one's home base and meds. I guess I'm going to have to go with the country of her birth, Denmark, although she's lived all over the world. Most of her family are still in Denmark and when she speaks to her parents or siblings she moves swiftly between English and Danish ... her parents' native language and her first. Danglish, if you will. She is wonderful, she is brilliant, she is compassionate and hard working. She is magnificently tall and yet delicate ... I'm sooo tempted to call her "The Great Dane" but that sounds so ungainly and she is anything but. So ... "The Dane" is going to have to work.

Soooo ... The Dane and her mom were in town for the weekend bringing the Entrepreneur some bookshelves from Ikea. The Mom is going to Denmark soon to spend some time with family and so it was wonderful to see her before she left. As much as I love The Dane, I love her mother. The apple didn't fall too far from the tree there. Plus, I love having someone with whom to oooh and ahhh over our children. We each think each other's child is remarkable and it feels pretty great.

As is our habit, we go out for dinner when the Dane is visiting; something I very much look forward to every month. Yet tonight, I was a little anxious as I was bringing my arsenal of meds/med food with me for the Very First Time because medication is something with which one does not triffle. Five minutes off? An hour because you were off an hour in the morning? Not a HORRIBLY big deal but several hours? A missed dosage? Not cool. At and the prices I'm paying to get well, I'm going to be compliant if it kills me before Lyme does!

I'm taking this healing thing as a personal challenge. Yeah, I know I have yet to experience the Mother of All Herxes and yeah, some of my Peeps are kind of waiting to see when it happens and how I'll react. My guess is that first it scares me, then it angers me, and then I'll be disappointed I'm not better yet. THEN I'll sob. The Mack will call me and cheer me on, tell me his own tales of healing and I'll laugh at him. He's a "tough guy" with a heart of gold. A Lyme Warrior/Champion is there ever was one.

Wheee, another loop on that roller coaster.

So I got ready for the evening out as if it were a first date, yet instead of attending to mySELF I attended to my MEDS. Pills in a sealed snack sized baggy? Yup. The Liquid Gold and 1 tsp. measuring spoon in another larger baggie? Check. Ok. I need to eat 40 grams of fat w/the Liquid Gold and at night I usually eat an avocado, yet somehow I couldn't imagine myself nonchalantly whipping out an avocado as we sat in the waiting area of a restaurant. One quarter of a cup of walnuts went into another snack sized baggie and into my bag, which was now above capacity and unable to zip closed. A quick redo netted me a bunch of old receipts and unused tubes of lipstick on the counter and room for my meds. Note to self: purchase awesome bag for medical reasons. Have I mentioned I am the Queen of Justification? I am.

I had forgotten that The Mom had never seen my new digs and had forgotten that maybe it would have been a good idea to do some cleaning lite. Whoops. The Mom, like The Dane, is incredibly gracious. After a rather quick tour of my rather empty abode we were off. You'd have thought I was leaving my oldest child for the first time. I kept fingering my cell phone and bag to make sure my meds were in there. I mean, this was my DEBUT. Another chance to prove to myself that I can still "live" while treating chronic Lyme.

Of course, the place The Entrepreneur and The Dane love most does not take reservations ... and it's a Saturday night. Ugh. A one hour wait and I feel the first wave of dizziness hit me. Fortunately one can be dizzy and sitting down in a restaurant and no one is the wiser. UNTIL the med alarm goes off. I think I've mentioned that it's important I take them on time. Therefore, the alarm is adjusted so I can hear it. Apparently so can everyone else. A tad bit on the embarrassed side I hopped up quickly (BIG mistake) and stone cold sober staggered my way into the bathroom where I locked the door and sat on the floor waiting for the room to stop spinning, which eventually it did. I then prepared as if I were about to conduct surgery. I washed my hands, got out all my stuff and lined it up on the counter, and washed my hands again. I am OWNING this. The first set of pills go down with nary a hitch. No gagging, no spilling water on my shirt, and no nausea. With shaking hands I took out my tsp. and got ready to open my Liquid Gold. Yup. Someone rattled the door handle. I quickly put down the Gold and cheerily said, "Just a moment, please." Come on, we know this isn't going to take "just a moment." What I SHOULD have said was, "Try the men's room. I'm busy doing drugs." But I didn't. Just in case some germs came through the lock on the door when it was rattled, I washed my hands again and took The Gold. Really. In another world with another set of vocabulary, I had finished the first lap, my four month old was not screaming at home w/out me, and I was still vertical. I quickly downed about 16 oz. of water, put my stash back into hiding and reappeared walking ever so gingerly across the restaurant. When I sat back down next to The Entrepreneur I tried to slide right back into the convo except I had forgotten one rather memorable step in the med procedure. Brush one's teeth! Yup. My Liquid Gold was visible for all to see ... and I was busted. I had to own up to the med stop in the rest room and then answer questions about "my condition." Who says that in 2013? No, I don't look pregnant. Not even close.

I HATE telling people I have Lyme because if there's one thing I DON'T look, it's sick. Hmmm. Tomorrow's topic is, "What To Say to the Chronically Ill" and the flip side, "What NOT to Say to the Chronically Ill" will be covered as well. #1 for the latter will be, "But you don't LOOK sick!"

But I digress. So we went through how great I look blah, blah, blah. Thankfully our table was ready and into the restaurant we went. I was hoping my head was hurting because I was hungry and was able to easily order off the menu: steak and Brussels Sprouts. I did NOT eat any bread but I did have small bite of the potatoes on my plate. Next time I'm just going to ask that things be left off I shouldn't eat. Why tempt myself, right? The steak was great and the Brussels Sprouts are the claim to fame of the restaurant. As dinner went on I began to get that feeling like the earth was moving beneath me. I steadied myself by grabbing the sides of my chair. Then I drank a lot of water. Finally I had to just put my head back. I mean, it was either that or have it land in my food ... which has actually happened before. I tend to push myself too hard too fast. But this time I figured appearing bored was preferable to appearing smashed. The Entrepreneur is pretty intuitive and having been my son for 25 years he also knows me pretty well. I could tell by the look on his face across from mine that he wasn't buying any of it.

I actually managed to finish most of my dinner and get myself back to the car before the sweating started. THANK GOD I was wearing real deodorant and not my Thai Crystal which does not work on Lyme body odor. Yay, I'm detoxing. Yay, I stink. Literally.

I've been in bed for the past three hours determined to get this written so I can keep my commitment to writing daily.

Oh. I finished the jigsaw puzzle and have a new brain app on my phone ... I can't figure it out yet but The Dane's mom loves it. Clearly, just as my biceps are lightweights, so is my brain.

But I did it. I showered, went to the local health food store today, bought some probiotics online, went out to dinner like a person who doesn't looks sick, and had a moderately successful drug interlude in the rest room.

Life is good. I survived. In a few minutes I'll take some probiotics and go to bed.

Tomorrow ... some variation on how to talk to the Chronically Living. And an fyi up front? We really don't want to hear that stupid country song about living like we're dying. Trust me on this.

Friday, April 19, 2013

The Stages of Lyme Disease AKA There ARE No Stages; One is Either Acute or Chronic.

Yeah, I thought I was actually going to get this one covered in yesterday's post but I didn't. After typing out that symptoms list I was pretty much done. Really. I try to live in the moment (note to self: add "Resilience" as a topic if I haven't already have and forgotten about it.) But it was upsetting. I'm all about spreading the word and raising awareness but it does come at a personal cost. One I'm willing to pay ... but, ouch.

So, before I launch into research writing mode some quick updates from my household.

1. I talked to my LLMD yesterday for my first follow up phone visit. My LLMD is in another state as we, the pandemic state of MI, don't HAVE any LLMDs. This will segue nicely into WHY I'm chronic.

But, I truly love my LLMD and love that she pays attention to ALL of me, not just my spirochetes and other infections. She doesn't want me "dying on the vine while killing bugs." As one who grew up in a "challenging" family this feels extra good. The only performance needed is to follow her treatment guidelines. No, I don't have to keep my hair out of my face at dinner or be banished from the table. No, she will not refuse to treat me or love me. No, I am not an "ungrateful bastard." I'm that woman in MI with an M.Ed and a master's hood in a plastic bag in the garage because Lyme Disease stole that career path. (NOT that there won't be another!!!)

So. I have both the dreaded genome that renders me unable to detox mold (I taught in a school filed with black mold for years ... this was a major issue) and I have the "the worst" MTHFR gene. Yes, we both pronounce it as it sounds. Really. If one doesn't want the name of a gene spoken of in terms of "a swear" then name it something else. Please.

Yet, I am detoxing like a CHAMP. Yes, I do drink a lot of water and yes, that nifty smoothie keeps things flowing freely in the bathroom but it's the SWEATING that shocks us both. Who am I to sweat???? I could run a 5k and not break a sweat ... but now? Five minutes in the tub and I'm a veritable font.

ALL good. So very, very good that she believes it's time to "move forward" and start detoxing mold from my system now that I'm in a safe enviroment, and add the next drug. Yes, it appears to be covered by my insurance (very nice) and yes, we are now attacking Lyme as well as the three bacterial infections. YEAH. I read what I wrote yesterday. I know what's going to happen and I say BRING IT. Because when on tx (treatment!!) when one is "sick" one is healing.

There's a reason my blog is called "Chronically Living" and this is it. HEALING is a journey ... and I'm chronically healing. Chronically Living. And yes, I did get invited to attend the local TED event in September and I am PUMPED. Who cares if I haven't been vertical that long for close to a decade. If I can't handle it an ENTIRE roomful of "movers and shakers" will get to watch how Lyme Disease attacks a life.

2. I bought a jigsaw puzzle. Unlike my ME/CFS doctor who told me NOT to use my brain, my LLMD says "you've lost a ton, start building it back up." So yeah. A 500 piece puzzle my 23 year old could put together in 15 minutes is still unfinished but it's about 3/4 complete!

3. I can exercise. I'm doing pretty well in the weight lifting department and am definitely gaining ground. But it is true, I will not run again. Ever. Even after 20 years of having recovered from Lyme, my "take that, bitches" LLMD won't do aerobic exercise either. And she's a Bad Ass if there ever one one. But that's ok. A walk on the Zen side might be worthy ...


The Subject Du Jour and w/out Further Ado: The Three Stages of Lyme Disease. AKA ... There ARE No Stages. One is Acute or Chronic.

Stage One:

Early localized Lyme disease develops days to weeks after you become infected.
- An expanding, circular red rash camera (erythema migrans) is the most common sign of early Lyme disease.
- Flu-like symptoms such as fever, chills, and headache may also occur at this stage.

(A note from Ruth: given that we know that up to 50% of Lyme positive patients MAY develop a bulls-eye rash eliminates that as "the most common sign of early Lyme Disease.")

Stage Two:

Early disseminated Lyme disease is the second stage. It may develop several weeks or months after you become infected and can cause:

- Skin problems, such as an expanding, circular rash at the site of the bite. More rashes can then appear on other parts of your body as the infection spreads. More serious skin problems from Lyme disease are rare in the United States but can include swelling in the earlobes and near the nipples, and severe thinning of the skin on the hands and feet.
- Joint problems, which are common and include brief episodes of pain, redness, and swelling in one or more large joints-most often the knee. Joint symptoms usually improve with antibiotic treatment.
- Early nervous system problems, such as pain and weakness in the arms and legs caused by nerve inflammation.
- Heart problems, most commonly a slow or irregular heartbeat (arrhythmia). Heart problems caused by Lyme disease are rare and are even rarer if you did not already have a weakened heart before you got Lyme disease.

(A note from Ruth: again with the rash nonsense.)

Stage Three:

Late persistent Lyme disease is the last and often the most serious stage of the disease. It may develop weeks, months, or (rarely) years after the initial infection and can cause:

- Joint problems, such as early arthritis that most often affects the knee. A small number of people eventually get chronic Lyme arthritis, which usually improves with antibiotic treatment. But joints that have been badly damaged may take a long time to heal or may not respond to antibiotics. Joint surgery is sometimes tried in these cases.
- Late nervous system problems, such as pain, weakness, or numbness in the arms or legs that can occur when the bacterial infection has spread to the nerves or spinal cord. Bad headaches, fatigue, or problems with vision, hearing, memory, concentration, and thinking can also arise. Serious nervous system problems can cause severe headache and stiff neck due to swollen tissues surrounding the brain and spinal cord (meningitis); paralysis of the nerves that control the muscles in the face; and inflammation of the brain (encephalitis). But these problems sometimes go away on their own. If not, they usually improve after antibiotic treatment.
- Heart problems, which are rare but can occur months to even years after being bitten by an infected tick. The most serious heart problems-such as inflammation of the structures surrounding the heart (pericarditis)-usually resolve without any lifelong damage. Unfortunately, heart problems can be the first sign of Lyme disease in a small number of people who did not have early symptoms.

(A note from Ruth: This is *#*#^$*^$# nonsense. "Usually resolve?" Like how? Like with 28 days of antibiotics? Note to self: Burrascano's Treatment Protocol/How to Choose an LLMD is a must do post. How, how is it possible that stages be assigned to something that HAS none. One is either acute or chronic. Period. This ain't cancer, people, it's Lyme Disease.)

Why did I include this if I think it's CRAZY inaccurate? Because this is how doctors are taught to think and miss MOST Lyme diagnoses.

http://www.webmd.com/a-to-z-guides/stages-of-lyme-disease-topic-overview (A site clearly run by those who align themselves with the IDSA: Infectious Disease Society of America.)

Stage One

In stage 1, people may have any combination of the following signs and symptoms:
- headache
- nausea
- fever
- spreading rash
- aching joints and muscles and fatigue.

These signs and symptoms may disappear altogether, or they may reoccur intermittently for several months. A characteristic red rash, called erythema migrans (EM) may appear within 3 to 32 days after a person is bitten by an infected tick. The rash is circular in shape and can attain a diameter of 2 to 20 inches. EM is not restricted to the bite site and more than one lesion may occur on the body. Up to 30% of the people who have Lyme disease do not develop EM lesions, making diagnosis more difficult.

Stage Two

In stage 2 (weeks to months after initial exposure to the bacterium or after the first symptoms appear), some people may develop complications involving :
- heart and/or nervous system disorders including but not limited to: various degrees of heart block, nervous system abnormalities such as meningitis, encephalitis and facial paralysis (Bell's palsy)
- conditions involving peripheral nerves
- painful joints, tendons, or muscles m

Stage Three

- Arthritis is the most commonly recognized long-term sign of Lyme disease (stage 3). From one month to several years after their first symptoms appear, people may experience repeated attacks of arthritis.

(A note from Ruth: I have been in stage three for over a decade and don't have any arthritis. Really. Note how different IDSA "experts" can't agree on what is experienced when?)


A reader in a forum asked, "How long do Lyme symptoms last?"
Answer: "Without treatment, forever. With treatment it's a crap shoot."

I'm deadly serious ... if you have questions about ANY of this, please ask me in the comments and I will do my very best to direct you to either a resource site or individual. It doesn't matter what your age, your race, your sexual orientation, your income bracket, or religion/creed. Ticks are an equal opportunistic parasite.

So now I get to go cross THIS off my list of "what to talk about" and add in ILADS. A Lyme patient's best friend and source of all treatment that LASTS.

Thursday, April 18, 2013

Some Basic Educational Stuff Such As Symptoms and Stages of Lyme Disease

Ok, so working from the list developed yesterday, I'm going to start chipping away at them.


*I am not a doctor nor do I or have I played one on TV.
I have, however, seen over 30 before I got a diagnosis so I am well versed in their "methods."
*I am not and will not be a life long Lyme victim.
While I have been ill for over a decade and may continue to be ill, hopefully going in and out of remission from time to time, I am not now nor EVER will be a "career Lymie." Just not me. I do my research, pick a course, and follow it. Wallowing isn't one of them and I gave up on the victim mentality at some point in my late teens/early 20's. It just wasn't working for me. I'm not a hard ass, I just have a very low bullshit quotient.
*Pretty much everyone has a Lyme blog, and while this is not specifically about Lyme and is about Chronically Living, this is a month long challenge to share Lyme information daily. I'll be doing that. Then I'll to back to my irregularly scheduled stuff.
If you're interested in reading heart wrenching blogs with videos of people languishing in bed while their devoted spouses spoon feed them, they're all over the place. Just not here ... no sensationalistic photos or videos. As an INFJ I can PROMISE you that.

So, that being said here's today's topic:

Some Basic Educational Stuff Such As Symptoms and Stages of Lyme Disease

1. So, who's the enemy really?

"Keep your friends close and your enemies closer." Somehow while I don't the original author wrote that about parasites, the principle stays the same. Know what you're fighting so you know their game. Then beat their asses.

Lyme patients are fighting the bacterial parasite, Borrelia burgdorferi. At least. Most of us are also fighting bacterial co-infections (I have three) as well as viral co-infections (I have at least five.) In order to be cured ALL must be addressed in treatment (tx for those fascinated by medical shorthand.)

"Borrelia burgdorferi, like the human pathogen Treponema pallidum, is a spirochete. Spirochetes are a group of phylogenetically-distinct bacteria that have a unique mode of motility by means of axial filaments (endoflagella). Spirochetes are widespread in viscous environments and they are found in the intestinal tracts of animals and the oral cavity of humans. The spirochetes have a unique cell surface which accompanies their unique type of motility. The endoflagella are contained within the periplasmic space between a semi rigid peptidoglycan helix and a multi-layer, flexible outer membrane sheath. When the filaments rotate within this space, the spirochetes move in cork-screw fashion. This type of movement is thought to be an adaptation to viscous environments, such as aquatic sediments, biofilms, mucosal tissues and the intestinal tracts of animals. For pathogens, this allows the spirochetes to hide their flagella, which are normally antigenic, from the host immune defenses.

Spirochetes are usually much longer than they are wide, and often their width is below the resolving power of the light microscope. For example, Borrelia may have a length of 20-30um but a width of only 0.2-0.3um. Hence, most spirochetes cannot be viewed using conventional light microscopy. Dark-field microscopy must be used to view spirochetes. Dark field microscopy utilizes a special condenser which directs light toward an object at a angle, rather than from the bottom. As a result, particles or cells are seen as light objects against a dark background."

Reference: http://textbookofbacteriology.net/Lyme.html

Just for fun facts to know and tell, my Lyme was discovered during a dark-field microscopy six years after becoming disabled. Having been a former science teacher I am fascinated by all things microscopic ... particularly when we're talking about MY body. I watched a little sperm like item squiggling across the screen and innocently asked, "Is that SUPPOSED to be there? That doesn't look like a blood cell to ME. What is that?" Almost nonchalantly the doctor replied, "Oh. That's Babesia." THIS was my defining moment. I knew that Babesia was a parasitic co-infection of Lyme Disease. While I hoped my voice did not give away the terror inside me I asked back, "Isn't that a co-infection of Lyme?"

And I quote the doctor, "Yeah."

Yeah. YEAH??? You've been treating me for six years for Chronic Fatigue Syndrome and Fibromyalgia. YEAH? All you can muster up is, "Yeah?!!!"

Yeah. Clearly I had my work cut out for me.

2. What are the SYMPTOMS of Lyme Disease?

- The infamous "Bull's Eye Rash."

While many believe that the "bull's eye rash" is considered the end all tell tale sign of Lyme Disease, the reality is that not every one gets one. Not even close. I may have ... but if I did, I sure didn't see it.

"According to the International Lyme and Associated Diseases Society (ILADS) physicians, the Lyme rash may occur in up to 50% of people infected with Borrelia burgdorferi. In other words, up to half of the people who have a Lyme infection may never develop a rash at all."

Reference: http://www.lyme-disease-research-database.com/lyme_disease_rash.html

Yup. You heard it here. All those "*I* never saw a rash on her" doctors need to familiarize themselves with the diseases about which they purport to know. Just sayin'.

So is a Bull's Eye Rash a symptom of Lyme Disease? ABSOLUTELY. Of ONE strain of the enemy. And only UP TO 50% MAY develop said rash. I had rashes of other sorts. It was suggested I change fabric softeners. White vinegar, people. I use white vinegar. This is not an issue for me.

* Other Lyme Disease Symptoms

- Symptoms of Lyme disease are often times confused with influenza, infectious mononucleosis, and rheumatoid arthritis: True. I can tell you that while I have blood work that shows a rather humongous "former" infection of EBV I never remember getting it and I did not test positive for any active infections during times of severe illness. I had a son with a HORRID case of EBV and his illness looked just like mine. Only he tested positive. I didn't. My ANA titers are fine, thank you. No RA, no Lupus, no whatever else that checks for.
- Headache: These are not your garden variety headaches. These are literally blinding, puking migraines that can last for days. Why? Because it hurts when Bb burrows into your brain.
- Chills, sweats, and fever: Mine went up to 104 for weeks at a time. "Fever of unknown origin." These are not menopausal sweats, this are AID patient drenching sweats that require at least a change of clothes. Usually change of bedding if one is fortunate enough to have the strength to do that or someone to do it for them. Chills? You want chills? We shiver under blankets when it's 80 outside and get goosebumps that HURT.
- Muscle and joint pain: This is not "weekend warrior" pain. This is incapacitating and renders one useless. It can hurt so much one can't sit on a toilet. Really.
- Fatigue: Not "tired." Not "really tired." This is "I can't lift my head off the pillow I'm so weak" tired. Yup. Unfortunately, this is my #1 symptom, fatigue. It would be great if I could take a nap but those Bb have drilled so far into my brain that sleep is nigh until impossible and all those "normal" sleepy time suggestions are laughable for us. We're hard to put under anesthesia and it's tough to get us to come back out.
- Swollen lymph nodes: Really swollen. Can't turn my head or swallow, and I'm drooling I'm so swollen.
- Brief arthritic pain and swelling in larger joints, such as in the knees: I have not had this symptom but it keeps many wheelchair bound. "Brief" is a little condescending.
- Nervous system abnormalities, such as numbness, pain, partial paralysis of facial muscles, and meningitis: Oh. Yeah.
- More subtle changes such as memory loss, difficulty with concentration, and a change in mood or sleeping habits have also been associated with Lyme disease: No duh. I now carry the label of "mildly cognitively impaired" via a neuropsych eval. "But you don't SOUND stupid," you say. "Yeah, you never knew me before." But the good news is I'm in tx (remember that medical shorthand) and expect to see ground recaptured.
- Irregular heart rhythm: If I had a dollar for every time I had to wear a heart monitor halter over the last decade I could afford my tx. Really. Our hearts are always, "Just FINE!" until we have a heart attack (which I did last year.) WHY? Lyme attacked it.
- Cough, shortness of breath: Nothing says, "scary" like the inablility to breath.
- Double/blurry vision, pain or floaters: Makes driving a real challenge. Or pretty much anything else that involves being able to see.
- Photophobia: Yeah, we don't wear Ray Bans because we're so hip, we wear them so we can SEE.
- Hair loss: This has happened to me twice, rather dramatically. Kind like watching a chemo movie. This was the motivation behind getting my hair cut really short. It's less emotionally devastating to find it on the floor of the shower when it's short.
- Difficulty swallowing
- Swelling around the eyes
- Unexplained weight loss/gain: I'm a weight LOSER. At my lowest I weighed 106. At 52 after having had four sons. I was accused of being anorexic. REALLY? Do you people READ??? That is not a middle aged issue (and at 52 my children were busy reminding me I was not middle aged and unlikely to make it to 104. I was OLD.) I used to teach and can tell you when to start watching kids for it and when it "peaks." Find me a newly anorexic 52 year old. Really.
- Buzzing, ringing or ear pain: Ok, this is some crazy making stuff and is managed through self will. No one cannot will it away but one CAN learn to "hear" through all the other noises. Although for some the pain is just unbearable.
- Difficulty eating: I actually usually cry all the way through dinner if I have to eat alone. I have to eat protein and a salad. It can take me 45 minutes to sob my way through a bowl of salad.
- Nausea or vomiting: To quote one of my "Wonderful Ladies," .... "I could puke a football field." Sometimes we do.
- Diarrhea or constipation: I am thankful to say that tx (TREATMENT) has rather quickly resolved this although I know when I change up my meds it's always waiting for me.
- Tremors: Intramuscular as well as the obvious. You do NOT want me to bring you a cup of tea. Really.
- Eyelid/facial twitching or Bells Palsy: Annoying.
- Abdominal cramping/pain: This feels a little like childbirth sans meds.
- Irritable bladder or bladder dysfunction
- Cystitis
- Testicular/pelvis pain: NOT an issue for me.
- Neck creaks, cracks or stiffness: Yeah, I can now diagnose Lyme Disease by listening to a person walk across a room. The noise is incredible.
- Insomnia: #2 (remember, fatigue is #1.) Treatment (tx!) has afforded me the luxury to half my sleep meds. This pleases me greatly.
- TMJ (jaw pain)
- Poor balance: To quote the friend that took me to see my LLMD, "You don't want to have her shut her eyes and let go of her!"
- Difficulty walking: At times.
- Seizure activity: Yeah.
- Stabbing sensations: Usually like a knife between two ribs. But that's just me.
- Personality changes: Although I have not had these and even close family and friends will back me up on this, I have found I've lost a lot of social skills. Maybe it's because I'm not "in practice" anymore and spend most of my days alone. Maybe it's because I feel lot of "what do *I* have to chit chat about that anyone can relate to?" Maybe it's because I'm an INFJ and find a whoooole lot of people a whooole lot of boring, but I really don't think that's it. I think I've been robbed of my confidence.
- Mood swings: YES! NO! I SAID YES!
- Irritability: At times ... but for me irritability is directly tied to how much pain I'm in, how I slept the night before, if I'm reacting to meds or experiencing a die off, or just got a letter from my mother. Come on. ANYONE with the flu gets irritable. This is like a 24/7/365 Hong Kong flu. We can get a little testy.
- Depression: Let me SHOUT THIS FROM THE ROOFTOPS. I am NOT depressed. I do have moments of profound sadness over what I have lost and didn't need to, had I been promptly diagnosed and given a month's worth of ABX (antibiotics!)
- Anxiety: This was one of my most debilitating first symptoms and it came out of NOWHERE. I wasn't worried about anything in particular, my job was going well, my kids were doing well, my ex was being his PITA self ... so nothing new there, and I really liked the guy I was dating. PLUS, it was the end of the school year, I had an ENTIRE summer before me and I had just run a 5k as a "Girls on the Run" coach. What's to be anxious about? This isn't "worried." This isn't tied to a subject matter. This isn't psychological. Those bugs are munching away and at times MANY of us feel we're losing our minds. Which we are, kind of ... for a while. This is the symptom I MOST FEAR returning during treatment and the one that sends us spiraling. Pain. Used to it. Inability to sleep? Annoying. Feeling like one could explode? Terrifying.
- Gastritis
- Menstrual irregularity: There a gift. I got this while I was post menopausal. Go me.
- Loss of libido: HA! We'll cover dating and the Lyme patient another time.
- Trouble speaking: Not out of the ends of my fingers but I have been known to say, "Put the food in the carburetor." Really. Where does that come from? Refrigerator and carburetor both have more than three syllables? They both end in "tor?" I got nuttin, but I will say I now laugh about that and it's freeing.
- Disorientation: I own a GPS and a cell phone that is WAY more high tech than I "need." WHY? Because they are both "assistive devices." But not tax deductible ... although I should look into that!!!

Reference: http://www.stopgerms.org/documents/tick.html?gclid=COOT9Pyt1LYCFfE7Mgod2g8AAw
Reference: http://www.envita.com/lyme-disease/symptoms-of-lyme-disease-great-imitator/

I think this is enough for today. It was kind of hard writing all that down. While my copy/paste skills are still intact seeing that all in print is a little emotionally overwhelming to me. Plus, I've gotta go take round two of meds. And I've got a list to write ... I talk to my LLMD on the phone today. I have finished Month One of tx (treatment, people, treatment!) One down, 35 to go. That's 1/36 of the way through ... already reduced to its lowest common denominator.

I guess I'll have to do the "Stages of Lyme" tomorrow. It's a spell binder. Be careful, gentle reader, you'll start to see people with Lyme all over the place. And you'll be right.