Internet-O-Philia

I have zero idea if that is a word in my title, but since it incorporates the Greek word for a platonic kind of familial relationship, it sounded just right. I admit it. I LOVE the internet. Not the kind of LOVE denoted by Agape or Eros, but you know, I love it like an old friend.

I "met" the internet, oh I don't know, about 18 years ago, or so? I mean, I flirted with it to try and tease out information, but it was an unfaithful friend at first...our friendship was so NEW, in its infancy, that it just couldn't give me much at all. At first, I cheated on it. I went to the big old downtown library to spend hours looking up info. Indeed, it was only two years ago, I was spending an inordinate amount of time there looking up info for a friend who was an only child, adopted, but found out he was one of 7 or 8 siblings! It took good old fashioned leg work to look up info that the internet couldn't provide. Ahh, but here I am, back in its safe arms again, my old friend.

So now, we are 10 months into post-stroke. Funny how life seems to be divided into pre and post something. Your life Before and your life After.

Before: Hubby going to work each day, wifey keeping up the house, making the meals, doing the laundry, greeting him hello at the stairs, sit down to dinner, discuss the kids, the house, the movies out you know blah blah blah.
OH MY GOODNESS, IT'S LEAVE IT TO BEAVER AND I'M BARBARA BILLINGSLEY

After: Hubby home during the day, wifey not doing diddly squat with the house, it's not THAT messy. Laundry? Why bother? Hubby doesn't need too many things washed other than jeans, underwear, socks and t-shirts, I pretty much wear my gym sweats (I do wash them often, thank you very much) and son-still-at-home forgets to throw his stuff down the chute, so voila! no laundry!) Doctor appointments every single week, sometimes three or four a week! Knitting! Glorious knitting! And hey, we get Netflix, so let's just settle down into the easy chair and watch a movie or two, read a book, do a puzzle (me: crosswords, him: Jumble) and the INTERNET. Which brings me to the point I was going to make, however circuitous.

The Internet (and I capitalize it, because it deserves high devotion) and I have a Love-Hate relationship. Post-stroke it has provided us with much information that is always at our fingertips.
LOVE IT:
It has helped interpret results, look up tips from other people in the same situation, provided a life-line with friends and family, given me a voice, get silly jokes that make you happy, play games to distract, (Words with Friends, anyone? anyone?) helped us hammer out a food plan, look up home remedies such as turmeric for inflammation, etc.

HATE IT:
Now that DH is experiencing some horrific new symptoms that we cannot figure out, we turn once again to the Internet.
OMG It's ALS!
OMG It's MS
OMG It's another stroke!
OMG It's a brain tumor
OMG It's Ebola
OMG It's It's It's It's .....fill in the blank
I HATE you, you stupid faithless cheating hard-hearted disgusting so-called friend. But hey, here's something!
I LOVE you, you wonderful tool, you amazing purveyor of all that's good. Why, your suggestions that it is statin-related could certainly be true! This might be an answer! Oh you adorable thing, you!

I HATE you. What do you mean this could be permanent? You wretched wretched thing.
How could you give us false hope only to dash it on the rocks of despair?

I am just betting that in Leave-It-To-Beaver Land, they didn't have this to deal with! No one ever died in LITB Land. No one ever became disabled, or went blind or had a headache, nor had dirty clothes nor anything other than a spotless house. No one had a stupid box with flashing lights and screen to stare at (well, maybe the television) that made their lives happy and miserable at the same time.

Another day, another doctor and test. Please Internet, the info you gave me is sending us to the doctor once again with another thing that may or may not pan out. PLEASE don't let us down! Please be the answer! Please oh please, be my friend again. I will love you forever. I will never be angry at you again, I will never turn my back on you, please oh please, be right this time.

Hey, there's this Nigerian Prince who wants me to help spend his fortune! OMG. This IS good news. And this nice lady says I have just won a $7900 Master Card! Things are looking up.....

Maybe I will make that Prince and MasterCard my new buddies. I'm sure THEY would never lie to me.

Being There

 Today we had the privilege of going to a 90th birthday celebration. This woman has endured many years of heartache: The loss of a husband, a son, a son-in-law, both much too young (when a mother outlives a child, they are always too young...) and a daughter that has had breast cancer. But no doubt there has been years of joy. She is the matriarch of a close extended family and is obviously loved as evidenced by so many in attendance. Nearly all her grandchildren were there as well as great-grandchildren (not sure if there are any great-greats yet!)  plus no doubt assorted nieces and nephews and many many friends. She looks 20 years (at least) younger, she smiles all the time, she is a gracious, beautiful, classic and classy woman. I want to be Grace when I grow up. (See, even her name is perfectly chosen)
I have known this wonderful family for nearly 22 years and have been there throughout much of their loss, pain, and sorrow. Happily, I've also been there throughout the joyful occasions, such as marriages, child birth, graduations, special birthday celebrations. Today was one of those special days. I love happy days and gatherings that don't include a eulogy.

One big huge mistake I made today. Boy, do I owe her daughter JD an apology. She has been through two years of hell. Breast cancer, double mastectomy, reconstruction, radiation, chemo, damage to her heart via drugs meant to save her life, and a rare condition that causes irreversible hair loss from chemo; well the list goes on. Fortunately, she has had a supportive and loving family that have been there for it all, to help in any way they can. So what was the mistake? I told her she looked fabulous.

Now on the surface, that seems like a good thing, a compliment. But I know better. Why not tell someone they look good that has been to hell and back? Well, sometimes to say that minimizes what they are going through. ("Great, I feel like &%#* and you are not recognizing it.") Obviously, that doesn't mean saying "Oh my! You look awful!"

What, then, should you say when someone is going through heartache, an illness, a death, a financial crisis?
From Miluna Fausch

1. See if they are being supported emotionally and spiritually. The medical system does not always provide comfort in these areas. Offer to start a support team or prayer group. You can call people and ask them to pray according to their faith.
2. Please don't say, "I understand." Unless you are in their shoes, you don't.
3. Hang in there with them. This may bring up your own fears. Supportive friends don't disappear when it gets tough.
4. When you don't know what to say simply say, "I don't know what to say - what can I do for you?" or "I am sorry."
5. Offer to run specific errands. Do they need groceries? Do they have videos to return? Can you pick up books at the library?
6. Understand that they may need some space to process and be alone and they don't always know how to ask for help.
7. Take them an angel, or cross or some type of spiritual or religious gift. Help them separate their Being from their disease.
8. Don't offer to make donations to organizations unless they suggest. They may not want to be reminded of what they went through or support any organizations.
9. If there is a support group for what they are going through and they feel it would help, offer to go with them to the first meeting.
10. Ask them what book they have always wanted to read. Do they have a copy? Buy and deliver the book to them.
11. Great gifts include a treat (if they are not on a special diet) a dessert, fruit, organic coffee or tea; a beautiful journal and pen to record their thoughts in.
12. Please allow them to feel what they are feeling. Don't say things like "cheer up" or "you shouldn't feel that way." 

I don't know who wrote these ideas, but I liked them:

1. Don't avoid me.  Be the friend, the loved one you've always been.
2. Touch me.  A simple squeeze of the hand tells me you still care.
3. Call and tell me you're bringing over my favorite dish.  Bring food in disposable containers so I won't worry about returning them.
4. Watch my children while I take a little time to be alone with my loved one. My children may also need a vacation from my illness.
5. Cry with me when I cry and laugh with me when I laugh.  Don't be afraid to share these emotions with me.  Pain isolates.  Help me reconnect with others.
6. Take me out for a pleasure trip, but I know my limitations.
7. Call for my shopping list, and make a special delivery to my home.
8. Before you visit, call to let me know, but don't be afraid to visit.  I told you I can get lonely.
9. Help me celebrate holidays (and life) by decorating my hospital room or home, or by bringing me flowers or other natural treasures.
10. Help my family.  Invite them out.  Take them places.  I am sick, but they may be suffering also.  Offer to come and stay with me to give my loved ones a break.
11. Be creative.  Bring me a book of thoughts, taped music, a poster for my wall, cookies to share with my family and friends.
12. Let's talk about it.  Maybe I need to talk about my illness.  Find out by asking, "Do you feel like talking about it?"
13. Don't always feel we have to talk.  Sitting quietly together is fine.  Your presence confirms that I'm still important and alive.
14. Can you take me and/or my children somewhere?  I may need transportation to a treatment, to the store, or to my physician.
15. Help me feel good about myself by looking past my appearance.
16. Please include me in decision making.  I've been robbed of so may things. Don't deny me a chance to make decisions in my family and in my life.
17. Talk to me about the future.  Tomorrow, next week, next year.  Hope is so important to me.
18. Bring a positive attitude.  It's catching.  Help me respect reality.
19. What's in the news?  Magazines, photos, newspapers, and verbal reports keep me from feeling the world is passing me by.
20. Could you help me with some cleaning?  During my illness my family and I still face dirty clothes, dirty dishes, and a dirty house.
21. Water my flowers.
22. Just send a card to let me know you care.
23. Pray for me and share your faith with me.
24. Tell me how you'd like to help me, and when I agree, please do so.
25. Tell me about support groups so I can share with others.

On the flip side saw a great article about what to say when you feel like %$&# and someone tells you that you look great! (And boy have we all been there at some point in our lives!) I am printing a few but if you want to read the whole list check out this blog link:
 http://invisibleillnessweek.com/2012/08/14/you-look-so-good/

The most telling comment I read was from a woman who simply said, “I wonder why they can’t see my pain in my eyes?” It’s a good reminder that though we sometimes think the world should accommodate our emotional needs, who around us is hurting for other reasons (divorce, loss of job, loss of loved one, etc.) and they are wondering about us, “Why can’t she see the pain in my eyes?”
Be sure to add your own at the bottom in the comments section!

 

1. Drugs are a wonderful thing (Ed note:Better living through chemistry is my personal fav)
2. I have my good days and I have my bad days.
3. I have my ‘good’ days...but this isn’t one of them!
4. Thanks, I wish I felt better.
5. That’s a perfect example of how you can never judge a book by its cover.
6. I’m trying to appreciate that fact. I know the day may come when I have to use a wheelchair or a cane, and my illness will be more visible.
7. Thanks. I have more to be grateful for than I have to complain about – which means I have a LOT to be grateful for!
8. Well I guess I did good job on my makeup, because I am having a hard time, to tell the truth.
9. . . .And that’s all that really matters, isn’t it?
10. Powder and paint, make you what you ain’t!
11. It took a lot of work to look like this.
12. It’s nice of you to think so, but you’re missing the pain and agony that I really am in.
13. And you look so wise. Looks can be deceiving though, huh?
14. I’m having a “good face” day.
15. Yeah. My kid thinks it’s cool I’m an ill person working under-cover!
16. I’m trying my best to do well OVER my circumstances instead of being under them!
17. It’s up and down.
18. I’m still struggling, but it IS nice to have a day when I am able to pull myself together and make it out of the house!
19. Good, because if I looked like I feel it would scare you to death.
20. Actually, I still am really hurting…
21. I am 36 years old outside but 85 inside
22. Thank you. I’m on my way to the Oscars.
23. Thanks, I’m grateful for this good day.
24. Things aren’t always what they seem.
25. Thanks, I guess I am fortunate that I have an illness that can’t be seen.
26. Thanks. I like good days.
27. Thanks. . . I wish I felt it!
28. Looks can be deceiving (and smile)
29. Thank God for makeup!
30. Thank you for caring. I try to act like I feel better than I really do.
31. Thanks, I am trying to even though it will never go away. I just try to remember things could be worse.
32. I’d be great if it wasn’t for the pain.
33. If I can’t feel good, at least I am determined to look good!
34. I’m in good shape for the shape I am in!
35. Smoke and mirrors!

Okay some of these are a bit sarcastic, but as they say, if you feel like being sarcastic, come sit next to me!
Please, just Be There! and Happy 90th Sweet Grace...and JD, I am so sorry I was a jerk. I love you, feel better and stay well.

As Time Goes By

 Did you know that famous song from Casablanca?  Did you ever hear the words sung by the character of "Sam" (played by Dooley Wilson) Maybe you've "heard" them, but not necessarily "listened" to them. We often associate it with the famous line of "Play it again, Sam" which is a misquote in itself. "Rick" (played by Humphrey Bogart) actually said this:


The actual line in the film is 'Play it, Sam'. Something approaching 'Play it again, Sam' is first said in the film by Ilsa Lund (Ingrid Bergman) in an exchange with the piano player 'Sam'.

Ilsa: Play it once, Sam. For old times' sake.
Sam: I don't know what you mean, Miss Ilsa.
Ilsa: Play it, Sam. Play "As Time Goes By."
Sam: Oh, I can't remember it, Miss Ilsa. I'm a little rusty on it.
Ilsa: I'll hum it for you. Da-dy-da-dy-da-dum, da-dy-da-dee-da-dum...
Ilsa: Sing it, Sam.

 But I digress. Here are the words, written in 1931...Wow, it could have been 2013! Of course the words could be redone a bit to reflect today's same sex partners, but you get the idea. I bring this up because yesterday was Valentine's Day. DH and I haven't really gotten each other the traditional gifts for the Big Day, mainly because every day is a Big Day. Oh, we might get a special chocolate truffle or two or a thousand, but mainly we try and make sure that the other knows how we feel about them. A note, a card, a long conversation. It's all good. Roses wilt, baubles get put away, but the expression of love never gets old. It is now 10 months since the stroke nearly robbed me of the one that I cherish the most. Every single day I wake up and I say to myself (and whomever happens to be in hearing distance) I. Am. Blessed. My husband of nearly 19 years, our children, our grandchildren, our home, our friends, our extended family. Honestly, I cannot possibly whine about anything. Yes, illness gets in the way, but I try to remember, so many have it worse. So many have no one in their lives to turn to in the dark moments of pain and agony. I. Am. Blessed. I will remember this as time goes by...

"As Time Goes By"

music and words by Herman Hupfeld

This day and age we're living in
Gives cause for apprehension
With speed and new invention
And things like fourth dimension.
Yet we get a trifle weary
With Mr. Einstein's theory.
So we must get down to earth at times
Relax relieve the tension
And no matter what the progress
Or what may yet be proved
The simple facts of life are such
They cannot be removed.
You must remember this
A kiss is just a kiss, a sigh is just a sigh.
The fundamental things apply
As time goes by.
And when two lovers woo
They still say, "I love you."
On that you can rely
No matter what the future brings
As time goes by.
Moonlight and love songs
Never out of date.
Hearts full of passion
Jealousy and hate.
Woman needs man
And man must have his mate
That no one can deny.
It's still the same old story
A fight for love and glory
A case of do or die.
The world will always welcome lovers
As time goes by.
Oh yes, the world will always welcome lovers
As time goes by.
 © 1931 Warner Bros. Music Corporation, ASCAP

Hey, you know what I want to hear? That you are blessed too!

Later in the film his character Rick Blaine has a similar exchange, although his line is simply 'Play it':

Rick: You know what I want to hear.
Sam: No, I don't.
Rick: You played it for her, you can play it for me!
Sam: Well, I don't think I can remember...
Rick: If she can stand it, I can! Play it!

Wholey Moley! (Guacamole)

It's been a little while since I posted the last time. The last time I checked, my blog had nearly reached 5,000 hits, and I was going to have a party and a cake (er, healthy of course) for every reader. But I opened it today and I totally surpassed that lofty milestone: As of today, we have reached very nearly 5,200 hits. My oh my. All I can hope is this: That it helps someone along the road.

This has been a week all over the map! My son came home on Sunday night from a Scout function and got so ill with what I assume was a norovirus: This used to be called Norwalk Virus named after a nasty outbreak in Norwalk, Ohio in 1968. However, the new accepted term seems to be norovirus, a catch-all term that can mean just about anything to anybody. We used to call it stomach-flu, a term that has fallen out of favor. For good reason too! It is NOT the same as influenza, which is a respiratory illness that was reaching epidemic stages a few weeks ago. But I digress. With norovirus, it is a lovely illness spread easily from person to person, especially in a large group and close environment. You may read that a nursing home or a school has mass illness amongst its denizens and they sometimes close the facility or quarantine and go on a bleach-cleaning frenzy. We just try to practice good hygiene, and for example, I carry hand wash when I am going on a plane, or if we eat in a buffet, I use a piece of paper to handle serving spoons so I don't touch their handles. Crazy? Maybe a little, but I would rather err on the side of caution.

My DH is still fighting symptoms of post-statin muscle pain, but he is doing so much better!
I, on the other hand, am having symptoms of a flare-up. My mouth is full of lesions, and I have an almost migraine. Almost because it is just under the surface. I am now recognizing that I have a correlation of a migraine with lesions. I feel like I am walking through a muddy field. Every step is exhausting and deliberate. I hurt so badly I want to just go to sleep. But no can do! It is a vicious circle: If you sleep during the day, you may not at night, and then you can't wake up in the morning. Blah blah blah. We soldier on.

Re: The healthy diet. Still no weight loss! BUT, I am looking on the bright side!
I feel for the first time that we are eating 99% healthy. It used to be about 60% healthy and 40% dessert and carb-y stuff i.e. breads/pasta/white rice. NO MORE! If we eat bread or tortilla wraps now, it is whole grain, whole wheat type, same goes for pasta and rice...now always brown with wild rice or other grains mixed in. We do not have butter on our bread, because we rarely eat bread. The jelly languishes in the fridge alongside the butter tub.

Why are we not losing weight? Theory: Eating more nuts/avocado/olive oil. However, with the olive oil, I carefully measure it and use a limit of 2 tablespoons for sauteing and add a veggie broth if the stir fry becomes a bit dry (instead of more oil) I measure the walnuts and we eat no more than 1/4 cup a day, usually sprinkled on oatmeal in the morning. I add chia seeds or hemp seeds or flax seed (or a combo of all three) to the oatmeal for another Omega 3 boost. It is pretty tasty and almost nutty with the extra seeds in it.
But all those goodies are kind of high in calories: 1/4 cup walnuts: 200 calories with 20 g of fat (ok, its GOOD fat which is sort of like a DRY HEAT i.e. it is still hot out and yes it is still fat) And it is still calories. I would NEVER have touched them on a formal diet years ago, but I am trying to think more about health than losing weight. Okay, that would be nice and all, but something has got to give. We are maintaining, and that in itself feels good. We shall see what happens. It has only been one month since we started this healthy diet. I will be interested in seeing what happens in the long haul.
Happy Almost 5,200 blog hits! (And a welcome to my Uzbekistan readers!)