Alter Everything

Day 339: What Not To Say To A Sick Person

Go to any Lyme chat room and you'll hear it: people laughing/complaining about the things people say to them about illness. Top list of offending comments?

• At least you don't have x, y, z
• You're not better, YET????
• If you exercised, prayed, didn't think about it so much, were more positive, you'd feel better

Today, I got a triple whammy. On a lark, I stopped by one of my favorite diners (I haven't been in a year). For an hour, the owner and I caught up.....about life...my health....her new hair/boyfriend...and my diagnosis.

"I'm just glad you know," Jill said.
"Last time you were here, we knew you were sick, but it was just the beginning of it."

For a while, we both sat and wiped away tears.

Halfway through, one of my favorite waitresses stopped by.

"Where've you been?" she chided.
"Oh, you know, hiding out..." I answered, kind of nonchalantly.

Something told me not to tell her. Before I could say "tick bite," the conversation got so comical, I almost don't regret it.

Her: You have what?

Me: Lyme Disease.

Her: Is it curable?

Me: Not really...

Her (interrupting, without giving me a chance to explain): That's your problem, right there. You're negative. I can see it.

Me: Really? (smacking Jill, under the table)

Her: Yes. Trust me. To beat this, you've gotta be positive. You gotta get up every morning and smile...even if you don't want to. You gotta get out of bed, do the sign of the cross three times, put your feet on the floor, and plaster a smile on your face...even if you got to fake it.

-WOW-

I debated stopping her.
I debated telling her... a) I'm not Catholic, b) What she was saying is Kryptonite to a sick person, and C) People need compassion..not lectures.

Instead, I chose to hear the message behind the messenger.

Me:  Thanks for caring about me.

Her:  Stay positive. Next time you come in here, you'd better be smiling.

LOL

Thank God, I'm working on acceptance.


Altered Today:  Gratitude for the people who let me be me


PS For advice on how to talk to a sick person, go here.

Day 218: Facebook Video Chat Altering The Face Of Illness

                                                                           Me introducing friends at my Mad Hatter Tea Party

It’s HERE.  Have you seen it? Do you know?

If not, let me be the first to tell you: Facebook now offers the ability to do video calls online. 
Can you imagine how this might impact the world of chronic illness?

• Envision being able to talk to your favorite friends face to face...without separate, complicated setups, phone bills, or scrambling for numbers.

• Picture attending parties/virtual gatherings (like Wendy's doing above, only without the hassle--this was done via Skype, but it took A LOT of coordination).

• Up again with insomnia (Chronic Lyme or otherwise)?  Meet the people you’ve been laughing and joking with 'til 5:00am (Bonus: They're already in your address book).

• Sick, housebound, or bedbound?  Get connected with just the push of a button (perfect when fingers don’t cooperate, phones are hard to hold, you're technically challenged, or you want company, but can’t get up to clean the living room).
  
  
• Educate others on rashes, equipment, and other good stuff without posting 20 photos or leaving the comfort of your recliner.
  
  

AMAZING!!!


Best of all, creating a video call has NEVER been easier...

1.  First, enable chat on your Facebook page. To do this, scroll down to the bottom left side of your screen (below News, Messages, Events, Friends, Groups, Apps, Ads) until you see this icon:

2.  Then, click go online. This will open a separate chat window to show who’s available to talk (friends with a green square are available, friends with a grey square might be available, friends with no icon are unavailable).

3.  To call a friend, select their photo and click the video icon found on the top right of their chat window (Note: If you have not yet used video chat, this will prompt a one-time set up to connect you...just follow the prompts).

4.  When they answer, start talking.  Or, if nobody answers, leave a video message. To do this, look into the camera, click the record message button, click “allow FB to access your camera and microphone” and close.  Then push the red button to start and the white button to stop).

NOTE: For a list of Frequently Asked Questions (system requirements, set up, etc), go here.  Yes, you will need a microphone (built in to most lap tops) and preferably a webcam (although you can still talk with no video feed).




HAPPY CHATTING!!!

Altered Today: What shut-ins everywhere should be talking about.

Day 164: AWKWARD...What Is Up With All The Arguing?

                                                                            Is Lyme causing us to think less clearly?

The quick brown fox jumped over the lazy dog. That's how my husband said I should start this blog post. Seriously, however, I am having a dilemma. I somehow want to illustrate my COMPLETE discomfort watching friends argue on Lyme Message Boards. Can you think of a good opener?

It is akin to watching couples fight when you have been invited to their house for a dinner party.  You go there thinking: "This is great. We'll relax. We'll have a good meal."  And you end up wondering how to get out gracefully...secretly questioning why people can't handle their upset in a more productive manner.

Now, don't get me wrong. I LOVE a debate. I LOVE when people disagree. I LOVE when people have opposing views and stand up for what they believe in. What I don't love is hate.  What I don't love are disparaging remarks. What I don't love are opinions...touted as facts...that are used to separate and pit people against each other.

THIS makes me crazy.

Honestly, there is so much drama surrounding Lyme Disease (and life in general).  Do we really need to perpetuate it within our own communities?

I am not pretending I have a solution here, but...as a human being and a life coach...I am engaged in the question.  What can we do to talk, laugh, and discuss things in a productive, positive environment?

If you have thoughts, let me know.

 

Altered Today: Home for Kitty, Opinions About Message Boards, Desire to Create a Lyme Positive Community

Day 156: Gone Fishin'

I don't want to write today. I have nothing to say. No insights to offer.  No positive thoughts to spin. 

NOTHING.

Honestly, even though I just woke from a four hour nap, I want nothing more than to curl up in a ball, put my knees around a pillow, and go back to bed.

In fact, I wasn't even going to write today.  I mean, does it even really matter?  Sure, you might wonder what happened...eventually.  But really, Day 156...Day 39...Day 2.  Aren't they really all the same? 

"I'm taking a vacation," I said to my husband.
"You can't do that," he reminded...you promised yourself you would post every day (good, bad, or indifferent)....even when you don't feel like it.  He's right. I did.

Still, today, after my Neurology appointment and explaining my symptoms for the umpteenth time, this river's dry. So, rather than making you endure me (which would be VERY repetitive and whiny), I thought I would give us both a break and let you hear from a new friend that's been living on my back porch since yesterday.  Apparently, she has a lot to talk about.  Hope you are well...and if you need a new friend, let me know.

 

  Altered Today: Running a pet shelter, new doctor, new med dose, long naps, parents in town.

Day 146: The Best Five-Letter Word

The last two days, I've apologized to two people. I'm not sure how it started.  It's not like I woke up with a check list of folks to make amends to.  Still, as with anything right now, when opportunities present, I take advantage.

My first apology went to "Sam" (not her real name)--a friend/acquaintance of mine that I used to volunteer with.

I've been thinking about her a lot lately because she suffers from years of undiagnosed seizures and a couple of other things (lesions in her brain, etc).  Is it possible she has Lyme Disease?

I adore Sam, but, when we worked together, it was tough to count on her.  In frustration, I'd often drum my fingers on the desk waiting for her to arrive for our scheduled missed phone calls.  I knew she had health problems, but I wasn't sympathetic.  My attitude?  "If you're not well enough to participate, don't participate, but I need to know."

Looking back now, I can see how unsupported she must have felt.  In her world, she was just struggling to keep it together and live normal life. In mine, I was frustrated and wanted results.  Luckily, we both have a sense of humor. :)

Yesterday, we finally caught up and commiserated over illness; doctors, symptoms, cooking, stupid things people say (including me)--nothing was sacred.  Thankfully, she accepted my apology. Ahh...hindsight.  We also made plans to catch up next week...hopefully I'll be up for it.

My second apology went to Dee (also not her real name)...a lady who works at my local YMCA. We met two years ago when I phoned in to inquire about my then "cancelled" gym membership...which was still being charged to my debit card.  At the time, my father-in-law had just collapsed from cancer and my house had just been robbed so I didn't take kindly to her response that they couldn't reverse the charges. 

Me: You will reverse the charges or I will call the Better Business Bureau.
Her: Are you threatening me?

(Use your imagination from there).

Anyway, when I saw her today, it seemed like the perfect excuse to make nice and bury the hatchet  (FYI: she didn't remember the incident, but it made me feel better).

What can I say????  Sometimes love IS having to say you're sorry.

Altered Today: Friendships, conscience, humanity, humility, healing

Day 121: S.O.S.

 

Well, the day's not off to a good start. Sleep didn't come easily last night and, when it did, it was filled with horrible/ironic dreams; like being trapped in a Hyperbaric Chamber running out of oxygen (think it's time to stop medical research before bed??).

Anyway, now on top of my normal crappy, sick/achy/flu-like/pain/virusy symptoms,  I feel like I have some strange hangover..which makes the fight I had with my husband this morning even more upsetting. 

It started when the alarm went off, which instantly had me up and worried about the dog.  Hubby was still tired (probably from me keeping him up all night) and I felt exhausted (for obvious reasons).

I rolled over, asked my husband to let the dog out (which he didn't think needed out yet), but obsessive me couldn't relax knowing she was in there so I kept asking.

Me (whiny): Baby, can you let Betsy out? I really need to go back to sleep.
Him (sleepy): She's fine. I'll get her in a 1/2 hour.
Me (insistent): But baby, I can't sleep if I'm worried about her, can you please just let her out? I really need to sleep.
Him (louder): She's fine. I'll do it in a little bit
Me (getting more obsessed): She's not fine. PLEASE...I just need to sleep.
Him (more annoyed now than sleepy):  I need to sleep too. What about me?
Me (now totally upset, awake, sick, and righteous): Hrruuuumph! (insert noise of slamming door here).

It was not a pretty scene; also not one of my finer moments, but this is how it is when you have a life surrounded by illness.  On the one hand, you have me--a sick person--grappling for any moment of reprieve. On the other, you have him--a caregiver--struggling for the same.

They're different sides of the same boat: both sinking, both overloaded, and both desperately in need of rescue.  I love you, baby. I'm sorry I slammed the door this morning and that I didn't trust you to take care of things later.  I am also sorry you're feeling tired and overwhelmed. We'll get through this.

Altered Today: Seeing life from my husband's point of view, formally apologizing, going back to bed.

Day 119: How Are You: Greeting or Invitation?

Me at 20 with my real-life critic

Back when I was 20, I spent a summer in Sweden.  It was a real culture shock: the food, the people, the places. I had never been abroad before, knew VERY little socially, and--like many naive Americans--was surprised how many people had negative things to say about our country and our citizens.

One of the first complaints I remember?  One particular Swede named Magnus who expressed his annoyance immediately upon meeting.

"How are you?" I asked, when I first shook his hand.
"You Americans," he huffed.  "That's what I hate about you.  You always say 'how are you,' but you don't care about the answer."

Hmmmm.  I never quite thought of it that way.

Over brioche and cheese, I tried to explain that although "how are you" is a common U.S. greeting, it doesn't mean we're insincere.  Seriously, if I take the time to ask how you are doing, I definitely --ok, usually--care about the answer. Otherwise, I'll just say "good to see you" or something more benign (hmmmm, maybe I'm faker than I think???). 

Regardless, I've been thinking a lot about that question. 

"How are you?" is a charged greeting--especially to a chronically sick person. Do I lie? Do I tell the truth? Do they care?

Below is how I responded to an old friend who asked recently via email.

Hi ________(insert name of well meaning friend here):

How am I??? Hmmmmmmmmm....
 
Well, that depends on what answer you are looking for.
 
If you want my pat answer, I am unbelievable (something I learned to say from Zig Ziglar...perfect if you are less than perfect, but don't want to be negative).

If you want my real answer, I'm OK; not great, but not awful...which is a relief from how things have been for a while. 
 
There's a lot I could say about doctors, treatments, hope, despair, drugs, vitamins, ticks, conspiracy, chronic illness, juicing, and more, but I'll spare you the details.  In summary: I'm still pretty darn sick, still getting tested for lots of different things, but much, much closer to a final diagnosis (We are about 97% positive I have Lyme Disease.  Should know for sure on April 11th, which is my next doctor's appointment).
 
In the meantime, I try to keep busy. I blog everyday (www.AlterEverything.com), go out when I can, and keep a pretty strict routine of researching, watching what I eat, and other strange health rituals.

The main concern of my doctors right now is to get me healthy enough to withstand treatment; a game I think we are winning.  Sadly, I'm not losing weight from the shenanigans (the one benefit many people usually reap with these kinds of illnesses), but I am learning a lot about myself, what I value, and what really matters...which has been surprisingly good...

Now, did he really want to know all of that???? I don't know. 

Was it honest and from the heart? Yes, definitely.   

In the future, when someone asks, I'll probably stick with "unbelievable" and fill in details if needed.  In the meantime, the experience does raise a good question.  Is "How are you" a greeting ...or an invitation?  

Altered Today: Thinking before I speak, requesting your point of view, seeking better greetings/answers

Day 91: Beating Boredom and Blues: A Primer for the Chronically Ill

My Favorite Four Days by Kathy Tagudin

Four days a month.  That's how often I feel "healthy."  Not symptom free, but vital--the kind of feeling you get when you've just recovered from the flu and want to leave the house. 

When this happens, I get dressed, go to movies, do art, work on my Etsy stuff, and question.  "Maybe I'm getting better," I'll say, sometimes out loud.  "Maybe I'm not really sick."

Those four days are magical.  I love them.  Although I wish they would multiply,  I'm not complaining. Many people never get a break from illness.  Still, it's not easy: being home, not fully functioning , and looking at a schedule filled with blood work, doctor's appointments, strange herbs, etc. Which leads me to the other days...

24-27  by Kathy Tagudin

The dreaded 24-27. 

Those days...are not as good.  Sometimes, they're filled with intense pain that require hot baths at 3:00am.  Other times, they're marred by insomnia and depression.  Mostly, they're just blah days filled with with randomness: weird aches, new rashes, hot/cold/tingling/stinging/burning sensations, stomach pain, strange food, fatigue, and this awful little annoying ache in my right-hand pointer finger.

To keep sane, I do a lot of things.  Which brings me to why I am writing...to discuss how I cope while I wait for a diagnosis.  Below is my list (it's not complete yet, but it's a start).  If you have anything to add, let me know.  As with everything, it's all a work in progress.

Beating Boredom and Blues: A Primer for the Newly Diagnosed or Chronically Ill

1.  Discover the Internets -- Need a break from researching symptoms or lurking on medical message boards?  The web's got tons of cool sites to keep your mind busy and your attention occupied. 

For fun, I like: Mr. Picasso Head, All About Pets, BeFunky, JibJab, Uncyclopedia, Games.com
For distraction, try:  Hulu,  TED, PostSecret, YouTube, Livemocha, Movieclips.com, The Onion

2.  Set Daily Goals -- Are you homebound? Do you work? Are you struggling just to get out of bed?  Whatever boat you're in, I have one suggestion: Accomplish one thing daily.  The goal doesn't need to be big.  Sometimes mine is as small as washing my hair or getting some sunshine.  Stretch yourself--don't push yourself.  Go on.  You can do it. It might not make you feel better, but it will make you feel more human.

3.  Be Your Own Best Friend -- I know. I get it. It sucks when people: say dumb things, don't understand, disappear, or genuinely disregard what you are dealing with when you are suffering with illness.  The truth?  They are not going to understand--at least not naturally.  So, your job is to: a) educate them b) move on or c) find people who will.  Period.  This means YOU (yes, sick you) are going to have to do some things you are not confortable with.  Things like:  Asking for support (have you told them what you need from them?); Reaching out to strangers (in waiting rooms, online, through friends of friends, through support groups); Demanding that you're heard (sometimes to very intimidating people in white coats who are much larger/stronger/smarter than you).  I know. It's not fair. I know.  You shouldn't have to do it.  Regardless, you need an advocate right now.  Can you think of anyone who's more qualified?  

4.  Get a Hobby -- What did you love to do as a child?  Bake? Sew? Knit? Paint?  If you're able, why not go back to it now?  If it's too hard, maybe there's something similar you can enjoy?  For example, I'm not always well enough to make art, but I can look through craft magazines and pull out projects I might like to do in the future.  Find ways to bring creativity back into your life.  Inspiration will follow.

5.  Share the Journey -- Call it therapy, call it writing, call it journaling, call it whatever you want.  There is something incredibly therapeutic about documenting your journey.  Websites like Blogger,  Wordpress, and LiveJournal are great ways to get your feet wet. For something more old school (or more private), consider a blank or handcrafted journal.

6.  Get a Sense of Humor -- I know. There's nothing funny about what you're going through. Still, if you look really, really hard...maybe there actually is.  For example: You know you're sick when you get a glass of water, consider putting ice in it, then decide it's too much effort (happened to me this morning).  Sad??  Yes.  Funny?  Yes, too.  If you can't find your sense of humor, borrow or steal one.  As they say, laughter really is the best medicine.

Altered Today: Writing for Others, Being Useful Instead of Mopey

Day 90: Touched by an Angel

In my life, I have always been surrounded by Angels.  My husband's name is Angel.  In moments of great sorrow, I swear I have been visited by Angels.  Many of my friends are Angels. And, I am confident, my dog is just an Angel with fur.

It's been said Angels wear a multitude of disguises. One day, they are a beggar. The next, they are a child. The next, they are butterflies, thoughts, or birds.  Yesterday, I actually got a glimpse of an Angel.  Her name is Laina and we were introduced in the most surprising way, via letter in the US mail.

Laina lives in Denmark and found this blog via another blog about a month ago.  She, like so many folks, faces her own struggles in life. She, unlike many folks, puts aside her struggles to make a difference for others.

Without getting into specifics, Laina wrote to me after watching my video Day 82:Tired of Being Sick (a video I REALLY debated about whether to post or not).  She was concerned and wanted to reach out.  Among her words, I found encouragement, love, and support.

In her letter, she reminded me of something important...something I hadn't really considered.  "I think you're grieving," she said.  "Perhaps mourning life as you knew it?"

In that moment, I knew she was right.

I am grieving. I miss me. I miss my old life. I miss the illusion of promised tomorrows and I'm upset about it.

Her timing was impeccable.  The day before, I just discussed Emerson's Law of Spiritual Gravitation and was in the middle of writing about my struggles with isolation and illness. I had also just finished reading a beautiful adaptation of the It's Gets Better campaign written for Lyme sufferers and, as the article references, was looking for "the friend pulling gluten free crackers out of her purse."

I don't know what will come of my new friendship with Laina: if we will meet, if we will keep in touch, or if we will ever speak again.  What do I know? My life has been profoundly altered by an act of kindness delivered from more than 4,000 miles away.

Altered Today: What I was originally going to write about.  Faith in good people and good things. Appreciation for what I have. Thoughts about writing and the difference we all can make with a few simple words.

Day 76: Let It Be

What do you pray for? Love? Guidance? A specific result? Do you pray at all? 

When I was little, I prayed diligently....usually in a "tit for tat" fashion.

"God, If you just get me out of this," I would cry.  "I promise I will never do x, y, z again."   

Sound familiar??

Lately, however, my prayers have taken a new tone...

I first noticed the change on my birthday in October.  Feeling sick, I spent the evening with girlfriends who were nice enough to buy me a cake, make dinner, and chat.  "God, I know you have a purpose for everything," I silently prayed as I blew out the candles.  "Use me and use my life to make a difference."

Then, while driving to the doctor's office yesterday, I noticed it again. Rather than bargaining with God, I carefully weighed what to ask for.  Healing? Peace? Courage?  Suddenly, an unfamiliar thought entered my mind. "ACCEPTANCE,"  I heard myself whisper.  "Ask for acceptance."

According to Dictionary.com, to accept is to:

-take or receive something offered with approval or favor

-agree or consent 

-respond or answer affirmatively

-undertake the responsibility, duties, honors, etc., of

-accommodate or reconcile oneself to

-regard as true or sound; believe

-regard as normal, suitable, or usual

-receive as to meaning; understand

-receive without adverse reaction

To me, acceptance is the opportunity to stop resisting.  There is a beauty in acceptance – a peace in it.

So, with heart in hand, tonight I pray:

God, grant me acceptance for what I cannot control.  Help me learn from it, find the beauty in it, and use it to help others.  God, instead of struggling, remind me to Let it Be.

Altered Today: Conversations with God