Food Police

A recent article pertaining to diet and cognitive problems in the elderly, ages 70-89 (and let me point out, "elderly" is a relative term)in a study involving more than 1200 people.

This article (if you want to read it is: http://www.medicalnewstoday.com/articles/251760.php  )
talked about carbs and the relationship to Altzheimer-like problems. In a nutshell here is part of the article:
By year 4 of the study, 200 of the 940 started to show signs of mild cognitive impairment, with deficits in language, memory, thinking and judgment.

The researchers found that:

• The highest carbohydrate eaters had a 1.9 times higher risk of mild cognitive impairment than the participants who ate the fewest carbs.


• The highest sugar consumers had a 1.5 times higher risk of cognitive impairment compared to the lowest consumers.


• The participants with the highest fat intake had a 42% lower risk of developing cognitive impairment compared to the lowest fat eaters.


• The highest protein consumers had a 21% lower chance of developing dementia compared to the lowest consumers of protein.


• When taking into account fat and protein intake, the highest carb eaters had a 3.6 times higher chance of developing mild cognitive impairment.

Now my thought is this: Where are the studies of younger people and carb related problems? (I'm sure if I dug I would find them) I used to work for a well-known weight-loss program. I had lost a lot of weight with them and so after reaching my goal, I went to work for them. I loved working for them for a variety of reasons. One thing I remember clearly is when people would ask me about low-carb diets,we were instructed to say "We don't count carbs per se, and we feel that low-carb diets are a fad and not particularly healthy as you need a balance."
 It is true, we did not count carbs, but we did place  a lot of emphasis on "good" carbs vs "bad" carbs i.e. an apple vs a slice of white bread. The emphasis was more on fiber so the theory was the more items you ate with fiber the more satisfied you would feel and by the very nature of fiber, you would be choosing more complex carbs vs say potato chips (which I daresay would contain little or no fiber) However, the company's huge push was that you could eat whatever you wanted as long as you counted it. I'm sure this resulted in people binging on, say Oreos, counting them, then starving the rest of the day. So back to the study above. It goes against everything I believed about nutrition.
Fat? BAD.
Protein? While not BAD, we tended to emphasize good carbs instead of meaty dishes. I personally have been eating vegan-ist for more than a year and what did I get? Pre-diabetes, anemia, low Vitamin D levels (We have no sun here to speak of and I don't drink milk) . In a more comprehensive  article, it mentioned that nut/oil eaters did better than their carb eating compatriots. According to the nutritionist we saw for DH after his stroke, that would be blasphemy! He was told to AVOID nuts/oil/carbs of the processed flour/sugar variety meaning pastas,breads,cookies, etc. Of course we know that too much protein is also bad for you: kidney problems, gall bladder problems, etc
I have always felt that our problems in our quest for diet nirvana was not that we lacked protein, but that we lacked fiber. How much should we get?
Adult women: 46 grams of protein per day, Men about 56 grams. This sounds like a LOT, but in reality it would look like this for a woman:3 oz of meat, a cup of dried beans, a glass of milk a day.
Fiber: Different lists vary, but it seems as if 25-30 grams of fiber a day is a good thing to strive for. Veggies, fruits, whole grains blah blah, you know the drill! There is no fiber in meat, not even the toughest steak.
Added sugars i.e. sugars that don't appear naturally, for example high fructose corn syrups, honey, table sugar should be no more than 100 calories a day (Ha, I could eat that in one bite...)
And FAT, the big bad elephant in the room: stick to about 65 grams a day, find this in nuts, good oils, avocados, fish...not those yummy Oreos. And here's a little tip: If it says Trans-Fats=0, by law, you can have less than .5 grams per serving and still be considered trans-fat free, making CRISCO in that category! Wahoo! Now that doesn't mean you can eat a whole can of Crisco and be fat-free, so don't run out and buy a can... DO YOU FEEL CRAZY WITH INFO YET?

Happy Crazidays

I am not out shopping After-Christmas sales. I am sitting here in the house alone while kids/DH are off in different directions, running errands, some gone back home. It is the most quiet it has been in days.
We had a wonderful holiday time, not only with our out-of-town kids visiting, but our in-town kids celebrating. Over the past few years, we have tried to not go insane over the holidays. I want it to be much more than the stores would have you believe: Christmas is NOT to buy more crap for people that they can't use. The point of Christmas to me is to stop and take notice of surroundings and just enjoy being with your family. Here's an idea of gifts we gave to each other:
Went to a used book sale in November, a fund raiser for our son's all-night grad party coming up in June. I was amazed by how many wonderful books there were, some obviously not even cracked open. Just about every single person on "the list" got some used books. I think we spent a total of about $25 that day and got probably in the neighborhood of 50 books. It was so cool. New ones/barely used ones/some still in plastic(!) and others with not even a crease. It was awesome. 15 people got books that way. I helped my kids and grand kids make grocery bags out of recycled fabric. DH and I got requested chocolate bars and home baked goods, and I scored 2 GIANT boxes of Jr. Mints. I am going to Weight Watcher HELL after this. No, I won't eat them all at once! I plan on making them last all year in the mini-fridge and divvy them out carefully to reward myself for exercise. Haha. My son got a giant container of Pub Mix, the ubiquitous mix of pretzels,rye bread crisps, cheeze-its etc. DH also went to Costco and bought our son Pub Mix and was so thrilled with his purchase I felt badly that I had to break it to him that I had already gotten some, hence, our son got two containers.


Another great thing I got for Christmas from Behcet's was about 5 new or forming lesions in my mouth. This was not my idea of a great gift, but it is what it is.

I don't want to focus on that. I want to focus on how great DH is doing. I know this whole stroke thing has been sobering to our family, him in particular. This has been a trying year...yet...it has been wonderful too! I so love having him home on a nearly full time basis. We are enjoying working on projects around the house, going to movies, reading more for fun (not just for his work). I also think that secretly he has been wanting to retire for a long time, and even though this isn't the way he thought of retiring, it has still been good for him to slow down and enjoy life a little more. 

It feels like a breath of fresh air to not have him working 8 hours a day, then coming home and writing papers, grading tests, etc for another 2 or 3 hours a day and weekends. I know this has also been hard making instant life changes, but for someone who hates change, well, he has learned to roll with the punches.  Here's to rolling with the punches
and a 

Going forward, looking in the rearview mirror

  There's a line in an old Billy Crystal movie called Mr. Saturday Night in which he played a down on his luck comic. He points to a man with a terrible toupee and says: "Is that a toupee? I, for one, was fooled."

I bring this up because this year started off bad and ends craptastically as my son-in-law would say.
I, for one, had such high hopes.

I don't want this to be a rehash of  our Annus Horribilis (Latin for Horrible Year) but suffice to say I hope next year is better. I think we have a tendency to separate things into neat little boxes i.e. weeks/months/years and suggest January 1st will be better than December 31st. It makes no sense really, but we are creatures of habit.

Happily we send 2012 into the abyss and hope, really hope that 2013 is brighter and cheerier. I received results from two important blood tests: My Vitamin D level and Hemoglobin a1c which measures your blood sugar averages for the last three months. It is like a video, where your fasting blood sugar is like a still photo of that one moment in time. It can detect diabetes and look for trends. I had one done in August and while elevated, did not put me in the diabetic category...yet. The docs said it was "pre-diabetes", which some suggest is a misnomer, doesn't really exist: You are or you aren't diabetic in other words. My naturopath said to me "I don't know how long you can be a vegetarian." I did not understand the gist of that until recently. You see, "schmeat" (my word for vegetarian versions of the animal proteins) contain a LOT of carbs. Compound that with I LOVE carbs: breads, cookies, yum.
I have always tried to be balanced though and I eat a lot of veggies and fruit. We all do. But DH likes cereal in the morning and we all like pancakes and waffles on a special family breakfast day.

Reckoning Day: My Ha1c went UP, not DOWN, as I had hoped and so I decided to start reintroducing chicken and fish into my menu. I had counted on going veggie to help with cholesterol levels, and it did. But crazily, I feel like I have failed. DH has been following a mostly veggie diet since his stroke too, but apparently we both have issues with our bodies processing insulin. Which means refined sugars and flours are the bad guys. Or so we want to believe. It feels like a losing battle. So, once again, I realize it is time to try and fine tune the dietary habits. Being a vegetarian, I think I was excusing the carb (over)load, thinking it was better than eating animal proteins. I am not sure there is an answer. We read about cave men, mostly meat eaters, but that they needed their body types to get them through lean times. Genetically speaking, women carry a lot more fat than men, but who dropped like flies on the Oregon Trail? HA. That would be the guys.
There have been countless books written about dieting, everything known to man (and woman) kind.
Blood type diets, carb diets, protein diets,egg and grapefruit diets, hummus and squid diets (ok, made that one up) blah blah blah. What are we supposed to eat? What is healthy? What is normal? What will prevent disease? Most nutritionists would emphasize balance in all things, heavy on the fruits and veggies, low on the goodies. This makes sense, but what the heck is "balance"? Whose idea is balance? I am out of ideas.

And after last week, who cares? I, for one, don't much feel like it matters. I hate feeling defeatist but does diet and good health really matter? I am hoping I feel more perky soon, but right now I feel so sad about things that make no sense. We try and control the world around us in the best way we can, but we have no control, not really. I hope next year is an 'Annus Mirabilis, a year of wonder and miracles. This year is shot as far as I'm concerned. Oy Vey...alas, alas.

Unimaginable Sorrow

Silent Night...
Mommy, when is Santa coming? Daddy, tomorrow is our last day of school before the break. Can we go to the zoo? Are we going to Grandma's house to open presents? Huh? Huh?


Holy Night...All is calm, All is bright...
Shh Baby, you have to go to sleep right now! Did you get all your homework done?



Round yon virgin, Mother and Child, Holy infant so tender and mild....
Hey, you have to scoot to the bus! I'll see you after school...you have ice skating tonight.





Sleep in Heavenly Peace, Sleep in Heavenly Peace.



 
 
 
 

Our hearts are broken.

One stupid choice

 Although this blog entry is not exactly about disease or illness per se, it is about the human toll of someone's actions. I am now going into my second week of a migraine and a mouth lesion that has taken a toll on my body. I don't need someone else's stupid decisions to affect my life, it's bad enough to just try and maintain. Here's a glimpse into the stress in our lives, all of our lives, that exact a "cost", not all of which is money.

Last Thursday I had to take my son for nasal surgery to a small community hospital about 20 miles from our house. I had decided to flatten two birds at the same time by making an appt for my mammogram at the same hospital earlier in the morning. We headed out, first one freeway, then the next...notorious for accidents both south and north. We were headed north for milepost 9. Keep that number in mind. It was a 65 MPH on this freeway and we were flying! (And running on time, but for me that is running late) Then...coming up to milepost 6 I see red brake lights. Crud. No, No, No! I am getting a very sinking feeling in my belly.

Now a full stop. Now a dead stop. T H R E E  more miles.

3 miles might as well be three hundred. Three thousand. I am doomed. I make the call that I "may" be late. oh ha ha. Duh! We creep. We crawl. My GPS says it is 2.9 miles to exit. 10 minutes later 2.8.
Panic. Sweat. I HATE BEING LATE. Then, up ahead, I see flashing lights. Getting close to actual accident (or what I assumed was the accident) It is now 9:30. My check-in time was 9:15. I want to puke. I am still in Migraine territory. I have had a migraine for almost a week at that point. I have had a horrific lesion on the roof of my mouth for almost a week. I cannot eat anything except small sips of liquid. The pain is amazingly, frighteningly, painful. But all I can think about is "we're late" lol.

I see the bumper of the car smashed into the guard rail on my right. Literally. The bumper, not the car. Oh dear. The car is across two lanes, in the median on the LEFT, backwards. What the? How in the world did it get there? The southbound traffic is slowing to rubberneck. The northbound is slowing for the cones/flares/police.

We finally arrive and much to my joy(!) they are running late because the techs didn't arrive due to the accident. but my joy was short-lived. The surgeons, the nurses, etc were also late and his surgery, once scheduled for 1:30 gets bumped back again and again due to the accident.
He goes in finally around four, and we leave the hospital at 9:30, hours after I thought we would be home.

I got to thinking, I am almost certain that speed played a part in the accident. That accident probably will cost the car owner $500-$1000 deductible. The insurance maybe another several thousand more.
Renting a car, maybe time off his/her job, medical bills...well it adds up tremendously. And that is the one person who got into the accident.

Try this on for size: The police/fireman/medical response=$$$
People late for their jobs=$$$
Someone misses their flight=$$$
Someone returns their rental car late=$$$
They haven't arrived to their shopping destinations costing merchants $$$
The hospital revenue cost $$$ for people being late, even something so simple as the cafeteria closing down before I can eat because of the lateness of my arrival.
The entire economy of the area suffers because someone decided to speed that day. I'm sure if I thought about it more, a lot more people would be affected exponentially. Sad, isn't it?

Since I first wrote the above words, but hadn't published them, word came of a shooting at the mall on this exact freeway. They closed down the freeway and all roads surrounding it. The mall has now been closed for the second day. Lives have been lost, one teenage girl fights for her life. Over 100 police personnel were involved in this horrific investigation. One young man decided that day to take an assault rifle to kill people at the mall. He made a choice to wreak havoc in many people's lives that day. Parents grabbed their children and ran, Santa hit the floor, people hid in dressing rooms, a young woman's life was spared because the gun jammed, two families got word that their husband/wife/father/mother were killed, one family got the word that their son had done this deed and killed himself. It has stunned the entire community. One stupid choice...

This Bud's for you

By "Bud" I do not mean the so-called "King of Beers". You know the one I am talking about! Do I have to spell it out for you????


No I am talking Buds as in Buddies: Good Friends, Special People, Associates, Chums, Companions, Comrades, Confidants, Cronies, Pals, Sidekicks...and cousins! (yeah this blog entry is for JG, because she thinks I only do this on Wednesdays, which is purely coincidental, I might add. And yes this is Sunday night..so gotcha!)
Okay, I totally got sidetracked...big surprise there. Friday morning I woke up with so much pain in my right ear and the right hemisphere of my pointy little head. And a lesion in my throat. Hmmm, Behcet's related pain? DENIAL. Sinus? DENIAL. Run of the mill headache? DENIAL.
But we were having friends over Friday night for dinner, shoot a little pool, play darts, watch Stanford wallop (err, maybe not wallop, maybe squeaking by...) UCLA, well it was going to be a fun evening and I wasn't going to let a little bitty pain spoil that. Soldier On Sergeant! Ignore this! Stop whining!
It was a fun night...one of my BFFs who is on chemo was having a far worse night than me symptom-wise. So my puny little picayune headache had nuttin' on her chemo rash and mouth lesions. It is so funny how a body responds in many of the same ways despite what illness or treatment you are on...so we played "match the lesions!" and I mixed up my magic mouthwash for her for hopefully some relief from that %$#&*^% chemo's side effects from the %$^#*^&! cancer.

Other than the craptastic symptoms, we had so much fun. It was good to laugh and attempt to play pool like drunken monkeys, even though there was no alcohol involved. PS DH, this sign is for you. You'll get it even if no one else does.

  No I'm not explaining it, private joke.


But I digress again. Horrible painful night trying to sleep and I woke up bright eyed and bushy tailed.

Bushy tail: check. Bright eyes: Dead

This is how I felt. OMG I was in so much pain! I dug through my medicine stash and found 2 year old generic Imitrex for migraines. Say...could it be a MIGRAINE???? Take the stupid meds and see what happens. If you have ever had a migraine and taken Imitrex or one of many generics, you know a weird thing happens. Your head feels like you have blown off the top like a gas leak in a crowded neighborhood.     But happily in a matter of minutes the ear pain subsided. Not the entire headache, but the ear pain calming down helped a bit. The nausea that came after and the pain upon hearing loud noises, not so much. Saturday night pain pain pain. Searing horrifying kill me now pain. Dang, this Behcet's is outta control! Called the local walk-in clinic blessedly open 7 days a week. What a great service! Within a few minutes it was determined that I was indeed suffering from the MOTHER of all migraines. (which I might add I get them 1-2 times a year, different than the cluster migraines that I get fairly regularly, but treat with Excedrin) Now you would THINK I would know this by now, right? Remember? DENIAL? (There was one time I went to the doctor having suffered for several days and he said to me just before giving me an injection: "What the HELL took you so long????" DENIAL silly!) Within an hour's time I felt human again.My new Buds (and old Buds): Bless you Mara NP. Bless you ZoomCare. Bless you drug companies. Bless you DH who drives me to the doctor and pharmacy without whining. Bless you debit card for swiping happily and coughing up its $. Bless you my BFFs who play pool and darts and keep me laughing. Bless you beloved cousins who Skype and make me smile. Bless my daughter who got me on Skype so I could "attend" a baby shower 500+ miles away today. Heck bless Skype and all forms of technology that have made our lives fun and brought us together (ok, sometimes it tears us apart, but that's another story for another time) Geez, my dad, who died in 1987 would have LOVED this stuff. Bless label makers. Where did come from? Oh, I had so much fun labeling all my crap that I had to show you! And this is me, so my DH can figure it out who the heck I am...Thank you to all my BUDS, new, old, whether they are people, objects, electrical currents, internet bandwidths floating in the air, movies, books, my Kindle, music, the ocean, grandchildren, cousins, family, daughters, sons, mountains, snow, the sun, the moon, keyboards, fences, grass, crossword puzzles, knitting,trees...stop me now, I'm getting carried away!  I'm so happy to be ALIVE. Denial, yes, sometimes, but joyful, always.

Paying it Forward: Making it Matter

This is a posting that refers to my last blog entry of "More Blessed to..."
I got a note today that made me cry (in a good way). I want to share it with you.

Dear _____________,
 Our sincere thanks for taking the time and effort to help return the _(college)__ gift card to us. I am amazed at the work you went through to find us and greatly appreciate your honesty and willingness to return the card. Our daughter who is a student at _____ gave the card to her dad for his birthday and he had just used a portion of it on Dad's Weekend. He will only use the card when he is with her so he was thrilled to get it back. Thank you again so much--we will "pay it forward".
Happy Holidays,
S R

This blew me away...I can't believe she took the time to write. I have often felt that it is important to tell people something nice..you never know what they are going through. A man in our city was a street-corner musician. He liked to do magic tricks to entertain children as well as play music for a few bucks. He was often homeless, but was such a cheerful soul. Many times he commented to his friends whether he really mattered. A few weeks ago, he committed suicide. There were editorials in the paper, there were letters from people saying how much he meant to them. Did they ever express that?
To him?
At our friend's celebration of life this past week, a long time friend of his had spent some time with him near the end of his fight with pancreatic cancer. He related that M said "I am not afraid of dying, but I'm afraid I will not be remembered." With the huge crowd that showed up and the stories they told, it was evident that he was loved by many...his adoring family and friends. I know guys have a hard time expressing feelings, but I genuinely hope his friends let him know how much he meant to them before he was gone. Obviously, he felt the love of family, I know his wife expressed it often. Have you told someone lately how much you love them? How much you appreciate the little things (and big things) they do?
A couple weeks ago, we went to a retirement-ish gathering for my DH. Many former students were there plus notes and cards from all over expressing how much he had meant to them as a professor. I know it meant it a lot to him. I also got to thinking, I am singling out friends to make sure they express appreciation, but I realized that there are many many family members that take each other for granted. A wife stops kissing her husband good bye in the morning. A husband doesn't express his thanks for a meal or clean socks in the drawer. A kid does chores without being asked and it's ignored. A comment is misunderstood and taken for criticism, hurting the one you love the most.
We also are quick to complain when something goes wrong, but forget to compliment when it goes right.

My DH was married before. Although he never really let on, I know he was very hurt by some actions in his former life. I know we all hurt each other at various times (guilty as charged!) but when something is done on purpose, such as maybe going to a party and being left there to sit alone the whole night, or belittling someone because they are not good enough or saying vile things just to cause pain, well it crosses the line. How many divorces are caused by stupid comments and miscommunication...i.e. one spouse uses the ignoring technique to shut the other out, effectively ruling out any kind of compromise, instead making it a weapon of mass destruction?

We have the most wonderful marriage. Why? Mutual love and respect. I make sure when we are in a crowd of people I praise him...in his hearing. I serve him first at a meal. I continually tell him how much I appreciate him for all he does for us. I try to let him know how utterly dear he is to me. Every single day. What do I get in return? Pure adoration and devotion. He makes me feel like a million dollars, an equal partner, he has never ever belittled me. We have never had a serious argument. He is my everything. How do I know it's so perfect? Well, I was married before too, and it was so painful to be made to feel like nothing each and every day.
He is an amazing father, grandfather, friend, and husband. I want him to know that every single day of his life.

Please please please tell the people in your life how much you love and care for them. Even the guy who packs your groceries. The gas station guy who freezes his butt off to run out and help you. The manager of the store who makes an effort to get you a special order. The medical professional who goes the extra mile to make sure you are cared for.The Starbucks barista who has your favorite drink ready when you walk through the door. The husband who works all day then helps clean the house when he gets home. The kid who puts away the dishes without being asked. The wife who goes to three stores to buy an ingredient to make that special meal. Yes, even writing the thank you card that was unexpected to tell someone how much their actions meant to them. Make someones day!



PS: I also got an email from the lady with the missing purse, thanking me for returning it. That was pretty cool too.

More blessed to give than receive...?

Two fun things happened this week. One I found a gift card with a receipt inside the folder in a parking lot. It had a substantial amount on it but with some detective work I was able to find the store that sold it and they were able to find the person that bought it. I sent it to the store with a note and I said "It makes me smile to imagine your smile at getting it back." The second thing I found this week was a purse. It was near a garbage can, with a torn strap and contained no wallet or cash or credit cards, so in my mind i thought someone had torn it from someone's arm and stole the valuables. There was business cards inside and I was able to locate the owner. It was rather mundane..she was in the process of switching purses as she had torn the strap and accidentally left it there with important things still inside. When I spoke to her, I told her I would drop it by the next day. And just for fun, I repaired the strap and left her a note inside that said "pay it forward". You know what? That made my day.This has been a bit of a sucky week. Broken washer. Wrong thing delivered. More lesions in my mouth all over my tongue. A funeral tomorrow for a dear friend. Rain rain and more rain causing leaks. My body is so sore I can hardly walk. My hands hurt so badly I feel like crying...yet...yet...yet...life is good and sweet and pure and holy.And some people who thought they lost something got it back.I am talking about me. JOY.

What a Wonderful World

 In spite of everything that goes wrong, we need to remember the truly marvelous things in life. I love hearing this song sung. I saw it with a beautiful video with flags waving, children running, flowers growing, sun a'shining. It bears repeating.

 What a Wonderful World written by Bob Thiele (as "George Douglas") and George David Weiss.
I see trees of green, red roses too
I see them bloom for me and you
And i think to myself what a wonderful world

I see skies of blue and clouds of white
The bright blessed day, the dark sacred night
And I think to myself what a wonderful world

The colors of the rainbow so pretty in the sky
Are also on the faces of people going by
I see friends shaking hands saying how do you do
They're really saying I love you

I hear babies cry, I watch then grow
They'll learn much more than I'll never know
And I think to myself what a wonderful world
Yes I think to myself what a wonderful world
Oh, yes! 
(Famous versions sung by Louis Armstrong/Ray Charles)

I had a visit with the doctor the other day and we are "staying the course" with my medicine. She is very pleased with my progress. Now if only my body would cooperate just a little more so I could get back to my old self. Oh wait. I AM my old self. Cross that one off. I want to be back to my YOUNG self. Remember the good old days? My mom mentioned that someone was talking about getting old and I quote:

 "Isn't getting old a bitch?"  (Her answer) Well, let's see now, when I was young I had cramps once a month, chronic migraines, strep-throat often (and finally a tonsillectomy) gall stones (and a gall bladder surgery)...No, I believe being young was the "bitch" as far as my health was concerned.  Other than heartburn (which I have had most of my life) and a slightly elevated blood pressure, I am in pretty good shape.  

Well, I guess that is true. And funny. It is all relative, isn't it? I was also watching a movie and a cancer victim was speaking and he said:

"You know, every breath you take is precious. Don't waste it." 

So I choose to breathe life in and do what I can to make someone else's life more lovely.
There are so many who have blessed me and made me what I am today. Even the cranky people! Even people who were out and out crappy to me. I have been beat up, literally and figuratively many times in my life. I should be bitter, I should be using that for an excuse, like the guy who is a serial killer and says "I got spanked as a child".
But guess what? There are so many who are so much worse off than me and I just don't want to be that bitter person whose sores just fester and become like a cancer. I remember years ago when I worked in a lab and I had to see this elderly woman daily to draw her blood. She was horrible! Nasty! Cranky! She said foul things to me and called me names, I would leave her room in the hospital and say to myself "Oh I don't want to get like that when I am old!" 
But guess what? I realized she was probably a horrible,nasty, cranky YOUNG person at one time haha! You don't just get nasty just coz you get old. (Unless of course a disease such as Alzheimer's fries your brain)
So here goes, I choose for this day to be the BEST one ever. What can I do brighten up a life of someone who is having a miserable time?
After a terrible ordeal (flood/hurricane/earthquake) it can bring out the worst in people, but it also can bring out the best in people. I believe there are so many lovely and generous people in this world. You know how nice people seem at the holidays? I know it is early, but there is this scene in Christmas Vacation where Chevy Chase gets locked in the attic and he is freezing, dresses up in hats and scarves, then starts playing old movies and this awesome Ray Charles song plays: The Spirit of Christmas, dang, it makes a lump in my throat every time. I wanna feel that lump every single blessed day. 
Find someone you love and give them a hug and make their lives beautiful today.
Disease sucks, but you don't have to give into it and let it rob you of your JOY.  
Blessings to you...find something beautiful. 
Hey it's not too early to get into the holiday spirit...even if you're Jewish!
http://www.youtube.com/watch?v=YhxdQBFmDZ0 

Doc Doc, who's there?

Tomorrow I have my one month visit with the nice Rheumatologist. It has been a crazy few weeks from tentative diagnosis to probable diagnosis to a treatment plan.
I think my Behcet's is under control, to the extent of fewer lesions, smaller lesions, faster healing lesions. Now that is great news! However, I am concerned that my arthritis (which is probably related to the Behcet's) is getting worse. I am having a hard time typing and an easier time of whining. My left hand hurts so badly! It reminds me of the early days before I had the arthritis diagnosis, 9 1/2 years ago. Now of course, I know that it is probably part of the Behcet's not a separate type of rheumatoid arthritis. I cannot make a fist nor pick up small objects with my left hand. As I said in a previous post, I am grateful it is not my right hand, so I can keep knitting. I actually took up knitting to keep my hands working. One doctor likened arthritis to a rusty door in the rain: If you don't keep using it, it will rust shut, and it is almost impossible to get it working again.
   Alrighty then...I will keep trying to use it and keep on knitting. I have too many things I want to make for gifts. Ha. Last year, a lot of people got hats and scarves. I still grin when I see a homeless person wearing a homemade hat or scarf. That might be one someone made just for them. (Since my family might be a little sick of another hat or scarf, I like to make them for people who may be exposed to cold weather. I cringe to see a person freezing in the rain and cold with no coat or other winter gear.) One year, my knitting friends made over 300 pieces of winter gear to donate. Last year a bunch went to a poor village in Honduras. It's pretty cool to see pictures of children or adults wearing something you or someone made by hand. It lifts your spirits and gives you a reason to keep on knitting/crocheting. It takes you outside of your little "poor me" box and makes you realize you can be something to someone who has so little. I think we take for granted all that we have at our disposal.
   Ask yourself: What one thing could I do to make someone else's life brighter?
A food donation? A trip to the dollar store for hats/scarves to donate? A kind word? A smile?
Do one thing this week to make a difference.
    On this blog it tells me different stats. How many hits I have had, what places they are from. I was stunned to see that I have had hits from all over the world! Singapore, Germany, Australia, Hungary, Canada, eastern Europe and other regions nearby. Go world!
I love the internet...it makes a very big world into a very small one. Greetings from the United States and welcome to my blog! I have added a language translator just in case you need it. This is not a political blog. This is just my own take on illness and disease and the medical profession that (sometimes) falls flat on its face. All the comments are my personal take on those things. If you or someone you know has been touched by illness, you know how hard it can be to communicate that to people without sounding like a total and complete whiner. I try to find the good even in the bad days. I like to laugh because frankly, if I didn't laugh, I would be crying my eyes out most of the time.
So give yourself a big hug, try and find the joy, and just keep going, one foot in front of the other.*
*This is a favorite quote from my friend to his beloved wife before he passed away last week due to pancreatic cancer, when she felt like she couldn't go on anymore.

Beautiful Day

What a difference a week makes:
 Things to be grateful for:
1) Not living on the East Coast right now. I used to live on Long Island and I saw pictures from 3 of the towns I have lived/worked in. They were decimated. I feel badly for the friends left behind to cope with the mess. http://www.redcross.org/hurricane-sandy


 

2) One of my dear friends lost her husband this week to pancreatic cancer. (No this isn't the grateful part) The grateful part is this: In his battle the last 10 plus months from diagnosis, he was not in pain, and at the end, she was with him to hold his hand and kiss him goodbye. That is a gift and a final act of love.
3) Simple pleasures: It didn't rain on the last day of the soccer season today.
4) Friends and Family: In spite of the pain and agony of the past few months/weeks/and yes, years, the bright spot was always you.
5) Doctors who listen; 'nuf said.
6) Medicines that work: ditto.
7) For Carole C, the nurse practitioner who had a "gut feeling" and diagnosed me correctly with Behcet's, putting me on a road to getting help.
8) My husband's amazing healing from his stroke. It is so good to have him feel "normal" even though there is the new "normal" .
9) That no matter what, we can pick up the pieces and move on.
10) That the election will be over soon and we can have one day off before the 2016 election cycle starts.
Oops, one more: I am so happy that the arthritis affects my left hand the worst so I can keep knitting with my right. 
   

What the heck????

When I started on the magic meds, the new doc also gave me something to help me sleep. It's a famous brand name! It's the drug of choice for a common problem: Lack of sleep. Lack of sleep will make you hurt, it will make you fall asleep or be exhausted during the day, it will make you testy, it will make you crazy. So obviously, you need sleep! But then...what if the little sleepy-time pill not only stops working after a week or so, but it makes you dizzy during the day? The room starts spinning so much, you feel as if you cannot hold your head straight up because you are swirling like that carnival booth where you squirt paint over a paper on a turntable. Sure, it makes pretty colors and cool patterns, but you don't want to actually RIDE on that spinner.
   The other symptoms start appearing, you start thinking you are crazy. (Well, if the strait-jacket fits...) You cannot think of simple words. You are trying to remember an object's name. You ask your husband to hand you that, that THING, as you point to a cup or a spoon. You have no idea what the word is. You write a note to someone then reread it and it is essentially gibberish.
Dear So-So,
Congratulations on your little bunghole of joy.

This REALLY happened before! Of course I meant BUNDLE!!!! What is happening??????? (worse yet, you have no idea what the person's name is you are writing to, and you go through your address book laboriously for a clue. ) Calm down, deep breath. Let's figure this out. I'm just tired. Of course, that's it! That's all! Why is the room going round and round???? Why are there bugs attacking me on the right? (They aren't, you just think they are there, eating you like midges on a summer's day)
Hmm, maybe I should call the doctor?
So I call the doctor and the doctor says: No more monkeys jumping on the bed. Just kidding! No the doctor says STOP THE MEDS NOW.
Okey dokey. Withdrawal time! Are you kidding me???? Not only are you having side effects from the drug, you are now having symptoms from stopping them.
Sleep will not come.
Wide awake.
10 games of Scrabble on the Kindle.
HA. I won! HA. How come it keeps rejecting perfectly good words like shambula (50 bonus points!)Sorry no such word., Please try again. Err, how about Bulasham? Same thing. It's not a word. Even my stupid Kindle knows how to spell better than I.
Sleep. Must sleep.
(My cousin mentioned that when she cannot sleep she thinks of poor Michael Jackson who tried drug after drug to sleep, finally succumbing to the nightmarish mixture of hellish drugs. I am not so judgmental of him now...)

I need sleep. Desperately. I literally have not slept more than 4 hours a night in years, except for that first week or so of the sleepy-time pill. And now...it is bye-bye.And I want to go night-night.
It is Halloween. I am going to be a ZOMBIE. I will not need special make up! Woo-hoo!

If Only....

   If only, if only...

1) Meds prescribed helped and didn't do another type of harm
 

2) Meds did not have awful side effects that somehow made you wonder if the cure was worse than the ailment (hmm, that might be the same thing)
 
3)  Life were "fair". Whatever THAT means.

4) People could understand that when you break down and cry over stupid things, it's not the stupid thing you are crying over.

5) When the storms come, you try and remember it is temporary. Even though that storm can do a lot of damage at the time, it helps to remember that "This too shall pass." 

6) You can keep in mind that there are many who are worse off than you. It is NOT all about you.

7)  The pain would go away.

8) You can remain upbeat in spite of the pain that won't go away.

9) When you look in the mirror you can see a smile instead of a sad face.

10) Those idiot brain doctors would read their journals so they could keep up with disorders that were identified nearly 100 years ago even if they are "rare". Think outside the box, Dox. (Especially the rheumatologist who should have known better back in 2003 when my symptoms were so horrible, and it was the perfect storm of symptoms that looking back, should have been identified.)

Magic Mouthwash

   Have you ever had a canker sore? Bad sore throat or had braces that cut your mouth? Have you ever had the "Magic Mouthwash" that was compounded by a pharmacist to alleviate the pain?
Well, I have used it in the past when I had painful sores in my mouth that I now know was caused by Behcet's. Now, I have them nearly everyday. (Happily, they seem smaller since starting my meds) This morning, I got up and yippee! No sores! That was this morning. Right after dinner I decided to take a few minutes to get caught up the news and update my blogs. As I am sitting here, I realize that I have a huge lesion on my tongue. I cannot believe it! Although I am NOT going to blog a picture of my tongue like some bloggers have, please believe me when I tell you I am sorely disappointed. Pun intended. I had such high hopes to be lesion free. Ahh, maybe tomorrow. Anyway, back to the Mouthwash: Homemade recipe: 1 part Milk of Magnesia, 2 parts children's Benadryl, a bit of water to thin it out, shake it up (really all you need is about a tablespoon total) and swish that stuff in your mouth and it really helps. Don't swallow it for crying out loud! You'll fall asleep in front of the TV!
I chose the minty flavor. Mixed with the cherry? flavor of Benadryl, it's sort of bubble-gummy.

Now for something completely different and bizarre. I laughed so much, I almost bust a gut.
Sitting at the eye-doc today waiting for my son, I overheard three women talking. Two were employees (one in her 30's who looks very "goth", the other perhaps in her 40's). One was an elderly (perhaps 80's?) woman with purple hair. Flaming purple hair, not the old-lady purple that is a "rinse" for gray hair that gives a lavender hue. They were talking variously politics, condos, as in getting someone to do your yard work with HOA fees, and dating...sex in particular. The elderly woman was going on and on how she enjoyed living alone and not worrying about having a man underfoot. She said (and I quote!) "I wasn't interested much in dating until I was 79. I had a lot of men, some were good in...(eww file this under TMI) and some were not. " Okay, you get the gist. It was making my head hurt because it was so graphic, yet hysterical. Then the 30's something Goth Girl said " Well, my aunt is elderly and I can't believe she is so interested in men! Honestly, I have to fight her for certain guys she flirts with that I want! And she is 57!!!!" I almost puked! When did elderly become 50's?
Honey, you ain't seen nothing yet!  The whole conversation made me laugh. A bright spot in my craptastic week.

Obla-Dee Obla-Dah, Life goes on...

I am sinking into a pit, a pit of pity. My lips are swollen (good news: saves on collagen injections!) and I have multiple lesions on my lips and gums, but again, good news is they are smaller than they have been in the past. I have discovered two very good blogs about Behcet's. One is called Behcet's Land and it is written by a young woman, only 22 who has Behcet's. Her blog link is:  http://behcetsland.blogspot.com/
   Another is written by a young woman in her thirties who has quite the harrowing tales to tell, mainly about mistreatment by various physicians, medical personnel, and even the DMV when she went to get a disabled parking pass! It is a horror story! In the second one, Chrissy (the writer) has an excellent blog entry about what a flare-up is like. I felt like I was reading my own diary. If you are interested in reading about it, it is in her April blog posting. Her link is this:http://livingwithbehcets.blogspot.com/2012_10_01_archive.html
 There are more blogs than I thought possible, but another one is written by a woman named Joanne Zeis. She seems to be quite the activist and is very knowledgeable. Although a "lay" person, she has been featured on Discovery Health channel and written books about Behcet's. She has been a good source of info as she has quite a few links on her blog with reputable people. If you would like to watch the video from DH, there is a link on her blog: http://behcets.blogspot.com/

One of the things I have noticed that is a commonality of Behcet's sufferers is the mentioning of horrid feeling of heat coming over your entire body. One man described it as feeling like his "blood was boiling". What an apt description. I will have 20-30 incidents per day when it feels like I am heating up from the top of my head down my whole body. I tried to describe it to the snotty rheumatologist in June, but I most likely made it sound like a hot flash, but tried in vain to let her know it wasn't. But of course she didn't listen. None of the symptoms listed on different sites describe this odd phenomenon, but so many sufferers do, so it must be a "thing". Let me tell you, it is one of the more wretched things I have ever felt. During the day when it happens, you feel as if you are going to pass out. During the night when it happens, you feel as if you drenched in sweat and throw the blankets off, but there is no sweat...It's a dry heat haha, like being in an oven and you are the main course. Or maybe Death Valley. Whatever it is, I hate it. But hey, menopausal women suffer with this daily, right? and they don't whine...or do they?????

Win some, lose some.

Dang dang dang. Woke up today with mouth lesions. I knew yesterday one was starting. They start off as little bump-like things. tender but not really painful. Usually in the next day or two, they break open and turn into open lesions. I have four distinct new ones in various stages.
   But I am looking at the bright side! They are smaller than they normally get! I can have them varying in size from a pencil dot to a pencil eraser size. These seem to be pencil point size (if you wrote hard and pressed down on your paper)
   I went to the dermatologist y'day and he looked at my lesions that are healing on my head. All good, no new ones (knock on scalp) He did take a biopsy from my arm as I have strange brown patches there that cove my whole forearm (they get quite dark in the sun) and now I have patches all over my neck. These are new. He is trying to determine if they are Behcet's related or medication related or I don't wash my neck haha. I don't think the arm patches are medication related as I have had them for many years, but the neck patches are new. They use that black light to peer at your skin to get a better look. I was going to ask if I could borrow it for a cool Halloween decoration, but I am guessing it is too expensive to loan out. I think I will dress up this year as a Zombie. I am beginning to look (and feel) like one. 
   I want to point out that this not an actual picture of me, but it might be close.  I think the curlers are a nice touch!

Breath Taking

   The word breathtaking usually means something amazing, wonderful, terrific. In this context however, breath taking means it felt as if my breath was sucked right out of me. I went to the new rheumatologist a few days ago. First off, we liked her instantly. She took the time to listen, really listen to me and my concerns. She also read at least 100 hundred pages of all the faxed reports from various doctors. She did a physical exam (the last rheumatologist in June glanced at my hands in lieu of a physical exam. ) She asked me multiple questions and seemed genuinely interested in me. And hey BONUS: she didn't roll her eyes one time at me.
   The presumed diagnosis is Behcet's Disease. Even though it was expected more or less, it still felt as if my heart skipped a beat. By presumed I mean that it is almost impossible to diagnose. It is a disease that is essentially diagnosed symptomatically. Looking at each symptom singularly they are almost meaningless. Putting them all together, they equal Behcet's, a rare (in America) disease. She started me on a medicine that is usually used on gout patients. Now, here comes the coolest part.
   Within one day (ONE!) my lesions were healed over in my mouth. By Day three, my lesions on my scalp were healing over. By today, Day five, I could not even find a scab on my scalp.
   There seems to be a tiny side effect. I have noticed bruising in my ankles, calves, and shins. I looked up the side effects and of course it said, call a doctor immediately if you notice unusual bruising. Okey dokey, I am a teensy bit concerned. They seem small, not big giant and scary bruises, but I will give the doc a quick call tomorrow. My fear? Take me off the miracle meds that are healing my lesions but making me sick. Wouldn't that just be my luck?
   All in all, I have to say I am so happy to have a diagnosis, we can work with that. I do believe having a diagnosis is better than the not knowing. Even if the answer is frightening, I feel vindicated. You know that funny tombstone saying "I told you I was sick!" ? That's how I feel. I've been telling doctors for the last 20 years that something was wrong and they wrote me off every time, even telling me I was depressed so I was sick. One doctor told me I was sick because I was "fat and didn't exercise."  So I lost weight, started exercising, and still I was sick.
   The good news is that psycho doctor got me to do that (diet/exercise) even though it hurt badly to hear someone be so cruel. That was 16 years and 140 lbs ago. Gee, I wish I could find her again so I could say "thank you!" and then punch her lights out. (sort of kidding)

A gut feeling

   Where we left off: It was in June that I was kicked to the curb by the rheumatologist. The one I used to trust when I got my arthritis diagnosis.
All summer long, I just felt so exhausted. I felt like I had the flu. Some days I was so exhausted, I didn't want to get up. Every muscle in my body ached. Oh I had some good days, but mostly there were the "meh" days: Not good, but functioning.
In September, I had a bizarre thing happen. I won't go into a lot of detail, but I developed lesions on my body, unbeknownst to me, but spotted by an alert nurse practitioner. She decided to culture them, even though she felt is was viral (as in shingles)
   Imagine her surprise (and mine) when they came back negative for viral or bacterial. They were just "there". I spoke to a cousin about them and a friend of hers happened to overhear a bit of conversation and described her own personal story of her disease. I called the nurse practitioner back and mentioned this disease to her and she made another appointment for an actual biopsy (as opposed to a scraping for a culture)
   By the time I got to her the following Tuesday (I had made the appt on Friday) I was violently ill. Again, I will spare you the details, but this really was horrible, like a noro-virus of some sort or food poisoning. She said we could hold off on the biopsy. HA. If I am going to be miserable, I might as well be really miserable.
   While there, we discussed the possibility of the disease that the friend had mentioned. The NP did not feel it was that, however, it got her thinking. She had a gut feeling that it was a disease called variously Behcet's Syndrome or Behcet's Disease. (pronounced Bay-Shet's after the doctor who discovered it) I had never heard of it, but you can bet by the end of the day, I would know about as much as can be known. I looked up every website imaginable. In short, it is a very common disease in the Middle East, Japan, and Asia where it affects more men. In the US, where it is extremely rare, it affects more women. It is an auto-immune disorder caused by vasculitis. (an inflammation of any number or type of veins) After reading about it, I fit nearly all the criteria, which was frightening.       
   What was even more frightening was that I had had these symptoms since I was a child. It explained so much of not only why I was currently so sick (quite possibly a flare-up) but why I had the arthritis diagnosis those many years ago. When the biopsy results came back, she was happy to tell me it wasn't cancer, but the report seemed to be consistent with Behcet's. I gotta tell you, I was
happier more than I was sad. Was this the answer after all these years? I cannot tell you how many doctors I have seen and not one, not a single solitary one had ever breathed a word of this disease to me until now...and it wasn't even a doctor. It was a nurse practitioner with a gut feeling and the wherewithal to say it aloud. DH was so upset: The rheumatologist I had seen in June had a list of all those symptoms and yet...she said they were meaningless. If a "rheumy" can't figure out an auto-immune disease, who can? To be fair, it takes many years to get a diagnosis: You see one doc for this, another for that and there isn't really a single doc to put it all together...and it is "rare" here. Although this seems bogus to me! If it is rampant in other countries, why aren't these people of that descent affected her in America, the melting pot? Is it because no one is looking for it? What the heck? I find that really hard to believe...surely it isn't as "rare" as "they" say? Stay tuned!

http://www.behcets.com/site/pp.asp?c=bhJIJSOCJrH&b=260521

Little Orphan Whiney

    This blog has always been about my husband's stroke in April 2012 and how we have coped as a couple and a family since that occurred. I have decided that it will now become more expanded and look at the bigger picture of good/bad health and how it affects our lives, particularly how the traditional medical profession has failed us as human beings. 

    I am not picking on any one doctor, but I think increasing red tape and inability to listen, just LISTEN to patients has created a medical nightmare.  We are now facing a health crisis in our nation, not just the inability to pay, but the inability to get a proper diagnosis and treatment. 

   We are oftentimes at the mercy of drug companies:  What research they choose to fund, what drugs they decide to push and advertise and how things are marketed. Alternative treatments are scoffed at by the mainstream medical profession at large and yet, even when it is a disease or illness that is easily found on the internet(!) a physician with their 15 minutes may miss the aha! moment sending the patient on a roller coaster ride of unnecessary pain and suffering because of a misdiagnosis or a non-diagnosis.

   I have always heard of the word "Orphan Disease" thinking that it meant a disorder that is so unusual and rare that it wasn't worth putting money into the research as it did not affect large groups of people.  I was partly right:

  

Definition of Orphan disease

Orphan disease: A disease that has not been adopted by the pharmaceutical industry because it provides little financial incentive for the private sector to make and market new medications to treat or prevent it. An orphan disease may be a rare disease (according to US criteria, a disease that affects fewer than 200,000 people) or a common disease that has been ignored (such as tuberculosis, cholera, typhoid, and malaria) because it is far more prevalent in developing countries than in the developed world.

    So what this means is this: If it doesn't affect Americans, then it isn't worth it. Wow. I was stunned when I read that. 

     I recently became so ill that it was hard to even walk. The exhaustion level and other symptoms manifested were so painful that I just often cried and slept. These are the doctors I saw (or didn't):

   1)My symptoms started flaring up in April. I made an appointment to see my former Rheumatologist: Appointment scheduled for JUNE.

   2) When I saw her in June, I had filled out numerous questionnaires about my symptoms. She rolled her eyes several times at me and said "These symptoms are so diffuse that they are meaningless" and then after rolling her eyes at me several more times and looking at my husband as if to say "Your wife is loony" she said "I suppose I could take some blood." I just said "Don't bother."  And I gathered up my things and left. This was not starting out well. This was a doctor that I had trusted implicitly.         

   Back in March 2003, she diagnosed me with a weird type of arthritis (an auto-immune type, not the osteo type that hits when your joints wear out). At that time I had been to 11 doctors. My hands were gnarled and curled up, I was unable to straighten them or use them to write. Each doctor said the same thing: It is tendonitis. I knew that was wrong. (My internet research led me to her when I thought it was scleroderma) You don't just wake up one morning and have your hands frozen into place. I was lucky to find her. I got treatment, but after several years of poisonous drugs flooding my system, I made the decision to stop drugs, change my diet, exercise, and do acupuncture.               

   Laughingly, my current situation turns out to be related to that first diagnosis. Why she didn't listen to me and treated me so poorly in June is mind-boggling.  So I got worse and worse with more horrible symptoms.

    Stay tuned for more on this continuing saga about what it took to get a diagnosis.