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:

Friend
- 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.)

Family
- 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.

http://articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407

But You Don't Look Sick!

http://www.butyoudontlooksick.com

The Spoon Theory:

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/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 ...

https://sphotos-b.xx.fbcdn.net/hphotos-ash3/603677_491317630923448_1602307760_n.jpg

Or 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.

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.

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 ...

OK.

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.

Reference:
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?)

Reference:
http://www.michigan.gov/dnr/0,4570,7-153-10370_12150_12220-26945--,00.html

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.

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.

Caveats:

*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.

A Day Late, Several Thousand Short -

I recently read there's a challenge out there in the World O' Lyme for bloggers to write daily about their experiences along the trail. While it started April 15th there were taxes to be filed and some CRAZY medical expenses to be tallied. So I wrote yesterday. Big deal.

In my former life as a teacher the phrase, "take away" was often used. Sometimes it literally meant, "what cool object can I send home w/the kid so the parent will know we did something today?" But often it was used as a question teachers used to motivate themselves.

* What do I want my students to learn this year?
* What do I want my students to "take away" from this year in MY class room?
* How can I enhance their learning?

So now I have to ask myself, what would I want a reader to know about Lyme and its life wrecking havoc during a month of blogging?

* That despite pain and fatigue I can still be witty?
* That we get down but not out?
* That it frequently costs us everything for a CHANCE to get better? ("Spin that Wheel of Fortune ... what did she lose TODAY, Johnny?")
* That the longer we go undiagnosed the longer, more aggressive/expensive/painful treatment is?
* That medical students are not taught how to diagnose Lyme disease and consequently we owe this "thanks" to their educational system?
* Perhaps you'd like me to wax political on the CDC, FDA, insurance companies and Big Pharma? That's always a doozy.
* My personal life? I can take care of that one right now. I go out to grocery shop and go to medical appointments. I have one dear friend who takes me to appointments to which I can no longer drive and an amazing "birthday twin" showed up at my door with an adorable gift and a card in March. I was embarrassed I had FORGOTTEN we were birthday twins. And no ... my own mother didn't send me a card. Talk about losses. But ok. Now that topic has been covered.
* TRAVELING with Lyme. I'm not talking Europe or even Chicago. I'm talking about being away from one's meds/supplements/foods for more than two hours.
* Dating and the Lyme patient. Or dating the Lyme patient. Or the Lyme patient even considering asking another to even consider what dating life might be like. That will be a good one. Right now I've got one word: documentaries.
* Darn. That's only nine and although this will count as one entry and the detox bath got its own, I've still got a bunch of topics to consider.
* OH. Food.
* Exercise.
* Some basic educational stuff such as symptoms
* Stages of Lyme disease ... I had to divide this from the above. It was just too emotionally overwhelming to write.
* The IDSA vs. ILADS. Burrascano's Treatment Protocol and HOW to find a good LLMD.
* Oooooo. How to navigate the online Lyme community. Whew. KISS. Keep it simple, silly/stupid. Really. Nay, nay ... from drama stay away.
* The stages of grieving.
* The attitude necessary to be bestowed the title of a Bad Ass Lyme Warrior. Yes, you're talking to one.
* Resilience. What it is, what it isn't, and who can have it. (Just a little teaser ... this is not something one is born with.)
* Faith and the Lyme patient. Or the Chronically Living. Or just me.

That's about all I can come up with at the moment. I've taken the first round of drugs today and am waiting for them to "settle" before I attempt a shower ... otherwise it's all over and I do mean literally. Then I have THREE things I must accomplish today, one highly emotional. Yay.

* Lyme patients and emotions. Lyme RAGE.
* How to support a former friend/former colleague/family member with Lyme.
* What to SAY to the Chronically Living (and equally importantly what not to.) I was recently informed by someone that they were worried they'd have a life like mine. Yikes. I'm choosing to look at that in terms of the speaker's comfort level which must have been pretty high to be able to verbalize fears to me. Good on me. Feeling like my life was something to be feared by others? That didn't feel so great.
* Tick Prevention: Dress Like A Dork
* How To Safely Remove a Tick

That's 22. If you'd like me to cover something in addition to the items above, please just let me know in the comments.

Will I be covering them in order? Not necessarily but I will count down the days; despite Chronically Living I'm still me. Still organized, still like my ducks in a row, and am an even GREATER fan of "the list."

The Detox Bath

So I'm sailing along a little wobbly but quasi merrily on my way to healing. Antibiotics? Check. More antibiotics? Check. Third antibiotic on deck? Check. TONS of probiotics? Check. Supplements. Yup. Food plan in order? Yup. Detoxing? Ok ... I'm a little iffy on this one given that I have the dreaded "I don't detox gene." But I do my best to eliminate in every natural way possible. This includes (cue the dramatic music) THE DETOX BATH.

Let me just say that I LOVE baths. Love. Love. Love. For years the bathtub has been my BFF, my solace, my companion, my pause that refreshes. Even after getting sick I loved them. They relax me, dim the pain, and soothe the soul. Well, not anymore!! Although I've been putting Epsom salts and lavender in the tub for years I have NEVER "detoxed" in one.

What fresh level of hell is THIS, you ask? The addition of two cups of innocent apple cider vinegar, dry brushing, and making sure the bath is REALLY hot. Not Joan of Arc burn-yourself-alive hot, but HOT. And I Sweat. Not perspire. Not get a little moist, and CERTAINLY not "glow." I sweat like a pig. This delights me actually, as generally speaking, I DON'T sweat. So as it's running down my face or into my eyes I imagine toxins leaving my body and writhing to death in hot acidic water. Burn, baby, burn. Take THAT suckas!

For about 15 minutes and then I've had enough. But I bribe myself into marinating for about a hour by watching reruns of "Law and Order Special Victims Unit" on Netflix. When the show is over (thank goodness it's commercial free and therefore NOT an hour long) I drain that water, shower off, and shovel my limp body into bed. This has been working fairly well since I began my new protocol on March 20th and this is April 2nd (ok, 3rdish) so I'm two weeks in.

According to my LLMD, sweat contains 3x the toxins of urine which is why exercise is vitally important in any Lyme protocol. Except I really shouldn't elevate my heart rate (POTS) and I really, REALLY shouldn't elevate my heart rate when I'm herxing. Yet detox is most important while herxing. (Is anyone GETTING this? Because I don't.) Remember, a herx is the body's reaction to those little buggers dying off and wreaking uncomfortable havoc in one's bloodstream. Symptoms of a herx include but are not limited to headaches, nausea, vomiting, itching, rashes, joint pain, SERIOUS pain, dizziness, lack of appetite, extreme exhaustion ... and the list goes on. And on. And on. Pretty much anything goes; a veritable Hotel California of possibilities. (Be sure and pay attention to this clever segue.) While recently in CA visiting The Drummer, The Designer, and The Adorable Grandson we went to "Cafe Gratitude" in Venice Beach. Everything on the menu starts with "I Am" and the name of the entree is a positive affirmation. I couldn't quite get out the words, "I Am Blissful" so I just pointed at the menu, although when The Drummer ordered and the waiter repeated, "You are Awesome" he responded with, "I certainly am." I had to resist the maternal urge to gently kick him under the table.

But I digress.

Today's herx was mild by veteran's standards so I tried to minimize it. So what if I had a headache or that tilt-a-whirl feeling from time to time. What's a little nausea among friends, really? There was no puking involved, just the wish to maybe get off the boat for awhile. In fact, it was not totally unlike sea sickness which while uncomfortable, only makes one WISH that they would die. It doesn't kill anyone and eventually goes away. Same with herxes. I've got this goofy metallic taste in my mouth that will not quit and I can only assume is med related.

______________________________________________________________________

Gee, time flies when one's detoxing ... here it is the 16th!!

You'll all be glad to know I've added in the third drug (that's a $568 copay every four weeks) and that metallic taste is gone from my mouth. Apparently I was killing me some bugs.

I accidentally experimented w/my detox bath last night and forgot to dry brush. HUGE difference and I just wasn't getting the sweat I was looking for. But tonight's a new night and a new chance to let it all out.

My nausea ginger gum has arrived.

I've finished two weeks of my supplements and can now make that "delicious" shake in no time flat and actually not hate it.

Yeah. I'll take an "I Am A Lyme Warrior" with a side of "Awesomeness" and a sweat band, please. And I can now say that proudly out loud.