Happy Holidaze

I thought I was being SO clever to say "Holidaze" but apparently it is a THING. A TV movie! A book! A blog! A band!
But what the heck. I decided it perfectly describes the end of 2013. Sometimes, looking back it is a daze, a blur, a whirlwind of activity like the eddy in the pond when you toss a big fat rock in the middle.
 April 2013 marked the one year "anniversary" of DH's stroke. (I put that in quotes, because you always want to think of an anniversary as a happy occasion of celebration and joy. But hey, even though the original stroke was not a celebratory event, rethinking it though, an anniversary of survival IS an event of joy...)
I digress. The one year (and now almost 18 months) since the awful event has seen lots of changes. The best change? We are getting complacent! What I mean by that is that we don't think about it day after day after day. It no longer haunts our waking moments, although truth be told, it sometimes haunts my sleeping moments. I wake up in a panic because DH no longer snores. Yep. Since stroke day, he hasn't snored. He no longer has deep rumbling breathing either. "This is a good thing"  you think, right? Wellllll...sort of. Except I constantly place my hand on him gently so as not to disturb him, but just to make sure he is breathing. But, it wakes him and he stirs. I feel sort of badly that I woke him, but happy that I can go back to sleep.
This year has brought us pain in other ways. Our next door neighbor suddenly died. He had health issues, true, but...still unexpected. DH and he were pretty close.
Another friend took a belated honeymoon and her husband of a few months had a massive heart attack and died on the cruise. Both these events were "gulp" moments in our lives. The first, barely over 60, the other was 49. Forty nine! His whole life ahead of him.
How can we honor the dead? By living.
Living every moment with joy.
Getting toxic people that are harmful out of (y)our lives, surrounding (y)ourselves instead with people who love and care back.
Spending more time with children and grandchildren.
Try to bring more joy to others.

Cherish each other.
Hug more.
Kiss more.
Fight less. (or not at all)
Compliment more.
Give gifts of time, not necessarily material things.
Hug even more.
Ditto on the kisses...

One very big joyous moment this past year was celebrating DH's 70th birthday. Best. Day. Ever.
When I think of the past year, that really stands out. Also, adding new babies. Four amongst our extended family members. Two marriages. (One was a dear friend whose husband died last year that I have written about before) An engagement. "Dating" the grandkids each month.
Visiting faraway family. Reading a hundred books. Remodeling a room or two. An around the world trip. Just kidding. THAT would have been nice...
Yes, we have had some very low points. But, we have had many many more joys.
Surround yourself with joy...always. See you in  2014 and may it bring you joys and blessings.










                                                            

Good Golly Miss Molly...Where did the time go?

Wow, here it is August and I realized I hadn't posted in more than a month.
To recap:
Both DH and I are doing pretty good.
He is still having bouts of unexplained nerve pain, especially on one side, so that is disconcerting. So many tests have been run, so not sure where to go from here. Fortunately it is not horrible all of the time. It is there all the time, but as he says "It is a matter of degree".  Some days bad, some days, not so much. Still...worrisome.
However he is not letting this stop him.  In fact, his keeping busy seems to make him forget the really tough times. He has been building a fence and as always, it is meticulous and precise. A thing of beauty and a joy forever, okay, we'll settle for 20 years or so.

I myself have been trying to find humor in everyday life. I do not have to look too far. I was watching a cooking show with the Barefoot Contessa at the gym. I am not listening to the sound, but glancing at the screen now and again. I look up and for some bizarre reason, someone is showing someone how to use a weird condom. I was outraged! Porn on a cooking show! Oh wait, they are making sausage. Good joke!

I have also had a real problem with patience while driving. People don't go when the light changes to green. People cut you off in traffic or they don't let you in. Aggressive drivers frankly make me nuts. But then so do slow slow slow drivers. Move it already!

I have really been working on this because I feel the problem is with ME. As they say, everyone has crap thrown at them, it's how you handle it. What to do? Well, I figured it out. So so simple!
I got books on tape! I don't care if I am stuck in traffic! More chances to hear my book! It is bizarre though, I am listening to one, reading another at the gym on my Kindle, and then a paperback at bedtime. It is hard to keep them apart.... But I digress. Truly, it has really changed my life. I am more relaxed and just happy to listen to a book. I have "read" 4 or 5 since the start of summer. I am a happy camper.

So, here's a very weird thing that happened to me last night. We had gone to an outdoor event honoring our second to the youngest granddaughter. It was in a beautiful outdoor setting. a garden with a pond, a tea house, picnic facilities. Lovely. We left after and on the way home, I looked down and saw this weird dark hair like thing on my arm. standing straight up. As I examined it closer, I see it is a caterpillar worm-like thing that probably fell from a tree. I was fascinated because it was standing straight up, not crawling...
OH MY GOODNESS, it was burrowing into my skin! I calmly stated screamed to my husband "what do I do????" It was one of those stunning surreal moments when you are kind of in denial. I mean it is boring into me head first! My husband says "Pull it out!!!!" (Duh, why didn't I think of that????)
 So I did. Then threw it out the window. I started thinking of all those third world countries where things bore into people and become a parasitic thing or causes blindness or some other horrible disease. I just never thought of something in the US doing that very thing. Alas, they are not uncommon, it is a matter of which ones in what part of the world. I think one should not think too much about it. It will make you CRAZY. Meanwhile, I called my stepdaughter and told her "Check the kids' skin and hair!!!!"  I never want to see THAT again!
Of course he tells me later that they secrete some kind of scuzzy stuff to break down tissue. Thanks. I need more to think about. It left a hole in my arm the size of a pin dot and it still is tender. But...it won't live to see another arm!
Have a great week! (and watch out for worms...)

The Living is Easy er Crazy

The strangest thing has occurred. Having lived nearly all my life with painful lesions in my mouth, sometimes as many as 10-20 a week, I have been almost lesion-free for the past 3-4 weeks. In June, I had a couple small ones, then...nothing. I rarely notice when I have them anymore. I only keep track of them for my doctor's benefit. (She has asked me to.)

So it was sort of odd to realize that I hadn't had any of significance these past few weeks. Well, until today. This morning when I got up, I noticed I had inflammation on my upper and lower gums, but no lesions. Hmmm. Then, when I was at the gym, I started getting an awful earache, which usually indicates a lesion inside my throat. I started feeling yucky, exhausted, and just plain awful.
Sure enough, with my handy dandy flashlight shining brightly, I saw the mother of all lesions in my throat, surrounded by little baby lesions. Oh aren't they cute? The position of the lesion just on the other side of my ear, explained the awful earache. This reminded me of several years ago, before I ever heard of Behcet's. I had a horrible headache (over 1 week in duration) and a wretched earache. I was in screaming pain and decided to go see the doctor. I had lesions on the roof of my mouth at the time. The doctor looked in my ears and said "You have shingles in your head." I think I was a little skeptical. I had never heard of such a thing. Almost a year later to the day, it happened almost exactly the same way! Again, I went to the doctor. Again the same diagnosis. Huh?

A couple of years after that, a neurologist said "Uh, I am thinking what you had was a migraine." (after he heard all the symptoms of light and noise sensitivity, etc)

NOW I know that I will almost ALWAYS get a migraine when I get a lesion on the roof of my mouth. I honestly don't know what is cause and effect. Migraine or lesion first? I dunno.

Well, back to the shingles. I decided to look it up. Gotta love the internet. It really IS a "thing".
I got this off a British site (nhs.uk)

Ramsay Hunt syndrome

Ramsay Hunt syndrome is a complication that can occur if shingles affects certain nerves in your head. In America, Ramsay Hunt syndrome is estimated to affect 5 in 100,000 people every year and it may affect a similar number of people in the UK.
Ramsay Hunt syndrome can cause:

• earache 
• hearing loss 
• dizziness
• vertigo (the sensation that you or the environment around you is moving or spinning)
• tinnitus (the perception of noise in one ear, both ears, or inside your head, where the noise comes from inside your body rather than from an outside source) 
• a rash around the ear
• loss of taste
• paralysis (weakness) of your face, known as Bell's palsy

Ramsay Hunt syndrome is usually treated with the following medications:

• antiviral medication (medication to treat viruses)
• corticosteroids (medication that contains steroids)

The earlier treatment is started, the better the outcome. Around three-quarters of people given antiviral medication within 72 hours (three days) of the start of their symptoms usually make a complete recovery. If treatment is delayed, half of those treated will recover completely. 
You may be more likely to have some permanent facial palsy (paralysis) if:

• your face was completely paralysed before you started treatment
• you are over 50 years of age

Around 1 in 20 people with Ramsay Hunt syndrome may experience some degree of permanent hearing loss.
*******************************************************************************
 Migraines as described by Mayo Clinic:
Attack
When untreated, a migraine usually lasts from four to 72 hours, but the frequency with which headaches occur varies from person to person. You may have migraines several times a month or much less often. During a migraine, you may experience the following symptoms:

• Pain on one side or both sides of your head
• Pain that has a pulsating, throbbing quality
• Sensitivity to light, sounds and sometimes smells
• Nausea and vomiting
• Blurred vision
• Lightheadedness, sometimes followed by fainting

*******************************************************************************8
 Certainly they share similarities!
Back to me. Okay I can see why they might diagnose it as such.
But, it has been shown that Behcet's patients can often have headaches/migraines/ other neuro/vascular disturbances ranging from mild to OMG I'M GONNA DIE. (Sorta kinda kidding about that last one.)
So anyway, the jury is still out. No one really knows what causes headaches/migraines in Behcet patients specifically. They are discussing the possibility of doing MRIs during a headache to see what is really happening. Of course, this seems hard to predict, therefore making it hard to SCHEDULE an MRI. I mean, I have a hard time scheduling a neurology appointment, let alone an MRI. Last time I tried to schedule a neurology appointment, it was a four month wait. TO MAKE THE APPOINTMENT. That's right, I could not make an appointment for 4 months, then they estimated another 2-3 months after that to get an appointment. Shameful. Shameful. Shameful.

So, I am tired of talking about the crappy medical professions lack of specialists.
Let's talk something fun.

During the "downtimes" (when kids are not home and we are not traveling) we enjoy watching movies on TV. Or at the theater. Wherever. So here's a funny story.
DH and I were planted in front of the TV watching a movie on Netflix. If you are familiar with it, it is "streamed" to you, like having a DVD, but there is no DVD, it is digitally sent to you. (Oh I love techno anything) ANYWAY. DH was trying to fast forward a movie and he was freaking out because it was going backwards. So he pushes the BACK button and it starts to fast forward. Oh this was so crazy!!!! Then Boom Badda Bing! He realizes the remote was upside down. Best. Day. Ever. I was looking around to see if we were being pranked.
Speaking of being pranked, it is nothing new. For you old-timers, you remember "Candid Camera" . Now that was pranking before pranking was a word!

PS: We are spitting distance to 8000 page views. Thanks, you rock.

Having a Blast-O-Rama

Life has lots of Fireworks!

Oh it is hot. This is an understatement. I cannot for the life of me figure out why temperatures past 80 were invented. Yeah, yeah. I know some people really thrive on the higher temps (DH among them) but I start wilting at approximately 75. We live in an area that is slightly humid usually, along with the heat. Rarely is it super humid, but it can get uncomfortable. Last week, my daughter and family in Ohio was experiencing 80% humidity. I think this qualifies as a "wet heat".

We went to visit another daughter in Reno: It started creeping up to the high nineties, with very low humidity. This is the "dry heat" that people brag about when you whine about the heat, as if this makes it any better. To my way of thinking, it does not excuse the temperature. But one thing is certain, it is aptly named: It quite often brings out the "temper" in some people.

Girl fight at a Starbucks: Made me giggle.

People getting snippy: I'm sure they are nice in the reasonable weather.

Horns honking. Tempers flaring. Road rage.

Then the really sad part of hot weather: People dying, or getting ill. Drownings. Near drownings.

So, I'm not sure there is a lot of good things about heat: Wet or dry, it's all the same to me. (Although I must admit, having lived on the East coast during hot humid weather, it is pretty awful.)

But this is not all about whining. We took a road trip and had a blast.
 Observations:
Casinos are fun to people watch in: People sitting quietly while winning thousands. I would be screaming and jumping up and down if I won like $5. Buffets: The woman who got three pieces of lettuce and 4 large scoops of dressing. The Crab Leg Station: It's like a feeding frenzy at Sea World.
How high can you stack food before it topples?

Museums are awesome. I love historical things. I especially like photos and clothing from real people. It's also fun to see that fashion has about four looks that are recycled over and over.

Visiting with family. Got to see two kids on this trip and their significant others and the other's families. I love the visiting part. Meeting new babies that have been born recently. Seeing your grown-up kids' new environments, work/school/houses. Love it. It makes you so proud to see your kids as responsible adults.


Saw my first black bear! He came bouncing up to the road up ahead of us, took a look and decided it was not a good idea to cross in front of out large vehicle.
(Why didn't the bear cross the road? Cause he was a chicken!)

Good thing he didn't run in front of us: He looked like a teen-age sized bear, and I think we would have won that match. We had fun thinking about what he told his buddies upon running back:
"Oh you should have seen this big metal box crossing my path! They got scared of me, coz they kept running!"

Spent a lovely couple of days in a Nat'l Park.
Score:
Mosquitoes: 500 hits, 3 deaths
Us: 3 kills, 500 welts
Met people from all over the world. Nice people, annoying people, smokers. UGH. Why don't they ban cigs from every public place?  Ahh, breathe in nature! And the smell of YUCH.

Older couple sat next to us on veranda, the beautiful lake in front of us. They were not talking. She was looking at her tablet and fiddling. He was looking at the lake. She spoke up.
"We can get the cruise for $13,000 but it's the last day."
"Oh, is that the Groupon one?"
"No, it's the cheapcruises.com one."
"Oh, okay." He pulls out credit card.
REALLY? My eyes bug out. Zowie. Where are they going to? Mars? LOL

Headed from there to the coast. (I think we were dragging our feet coming home) and it was unusually hot there too. But we did get to go on several hikes on day two as the weather calmed down a bit to "normal". It is also where there was a girl-fight in Starbucks.

Older woman sitting on right hand side of small table in comfy cushy chair, writing letters in her lap. Coffee cup on table.
Younger woman sits on left with her cold coffee placed on table.
OW nastily says: "You can't do that, you'll spill on my stuff."
YW:" I have a lid on it." Voice getting sharp and loud.
OW: Pouting.
YW: Glaring.
OW: pushes YW's cup away
YW: puts it back.
Me: Giggling, taking in the drama. This is WAY better than TV.
Drama continues for a few more moments. Man steps in to offer his two cents. (Bad idea)
YW: Loudly and shrilly: "I am 48 years old, I can do what I want!!!!"
Cushy chair opens up across the way. Neither moves. Both sit in silence hating each other. I think I would have moved. Hard to enjoy one's drink when you are choking on hate.

So what do these things have in common? Well, I thought my life had drama at times. But after watching and observing different situations, I am now thinking we are a bit boring. And I like it. A LOT.

Happy Fourth of July!

What a fine mess we're in Ollie

Although the title phrase is not exactly from the famous Laurel and Hardy duo (It was usually Ollie (Oliver Hardy) who used to say this to "Babe" (Stan Laurel) in a skit context) but I figured you might not get it, if I said Babe. I digress.
In the last couple of days we have learned that a berry mix containing cherries, berries, and pomegranate seeds has caused multiple people to contract Hepatitis A. Now this mix seems to have been sold exclusively at Costco and yes, we purchased and ate them, along with another brand (from Costco) containing the exact same mix.

This mix was PROCESSED in Oregon, but the theoretical Hep A virus may lie in the pomegranate seeds that are from Turkey, Argentina, and Chile. We have made it a fairly standard procedure of not buying produce from other countries (except Canada) due to some incidents that have been connected to perhaps poor hygiene and looser standards than we have here in the US. This is NOT to say that everything here is perfect; we've had terrible scares with spinach, lettuce, tomatoes, green onions, as well as meats and poultry. But, overall, I feel that our produce is safe(r) than foreign countries. I am not trying to play the High and Mighty "America is Better" card, but other countries have had very bad luck with food items and we may never hear about it. For instance, in China, you may recall the milk tainted with melamine scandal, causing infant deaths and 300,000 sickened (that we know about).

Here's more on China's Top Ten food poisonings:
China's Top Ten Food Scandals

I don't mean to pick on China, but they have been secretive at times, hiding information from their own people. Another instance is Mexico. Salmonella tainted melons, mangoes, peppers, and green onions that have hit our shelves have sickened and killed many people here.

Well first of all, if you bought this berry mix from Costco, called Townsend Farms brand, you may have looked at the back and seen that they were from a company in Oregon. That may have made you feel better. It did me...but in looking at the package, in tiny small print, there it is: The source. Now I know pomegranates do not grow in Oregon.Maybe I thought to myself: California! I wasn't paying attention. Now I am just mad, at myself mainly for not reading more clearly where the product originated.

You cannot rely on the company name or address. You cannot rely on the "distributed by" American-named company. I am angry that people who bought these berries for smoothies for their children or perhaps people who have compromised immune systems and nothing tasted good to them but a berry smoothie, will be getting sick.

Years ago, I got a Hep A vaccine and my kids have been vaccinated, but we don't think hubby has been. What he read is that the Hep A vaccine is not appropriate for people over 50. OMG, those are the very group that may be at highest risk (besides children) for the disease.

Please be aware of where your produce comes from. Try to buy in season and local when possible. Or at least from known American companies or known companies based on foreign soil. By that I mean say, "Dole" bananas, the company is more apt to have safer practices than say "Yellow Brand" bananas.

For more information on the Berry mix recall:
HAV Berry Recall

Keeping (In) Sane Caution: Icky Pictures!

I was supposed to keep track of my mouth lesions since I saw my rheumatologist two months ago. 
It was a real eye opener. Between March/April/May to date, I have had 42 mouth lesions. This is not counting the pustules that did not break open. When I saw her today, she counted 11 blisters on my tongue, under my tongue, on my gums, and on the roof of my mouth (ones that haven't broken open yet). Not every one will break open. Some become like blood blisters. Others will be underneath the skin, painful yes, but not as painful as those that open up. Those are really bad because food or drink brushes against them.

This is NOT my mouth. BUT, it looks like my mouth at times.

Yes, I get them on my lips, in my gums, on my tongue, under my tongue, on the roof (these are the WORST), in my throat, next to my teeth (try flossing with that!), after every dental procedure, after eating nuts, or accidentally using toothpaste with triclosan in it.
One of the ways they diagnose Behcet's is if you get mouth ulcers more than three times a year. hahahahahahahaha.
The joke's on me! But guess what?

I am alive and kicking. Today when I went to the clinic, I counted at least 25 people in some sort of agony: Wheelchairs, canes, walkers, or walking with help. Elderly, young people, children.
So many far, far worse off. And these were only the people with visible illness and disease. Imagine how many had "invisible illnesses"? 
I. Am. Alive. My husband is alive and doing well. How is YOUR life doing? I am jumping for joy. You should be too. Find something GREAT about today!

 

Walking/Running/Crawling

Saturday is a Big Day! Both DH and I are participating in a charity event for the American Heart/Stroke Association. We are so grateful to our friends and family for donating to the cause: Money for research and education to help someone else the way we were helped a year ago. 

This week I met a woman in the gym whose husband had a stroke two years ago. Her story was achingly familiar. Her husband had sudden vision loss. Went to the doctor. So far, so good...except...they were told they couldn't find anything...two weeks later, full blown stroke. He started talking gibberish. In the hospital he was asked how old was he? 27 was the answer...(not even close, since he knew his daughter was in her 40's!)  This man was a marathon racer, a fit and active man, but his stroke was caused by heart beat problems, and now he has a pacemaker. 

So once again, we feel blessed. It's a funny thing about human nature. You can always find someone that's richer than you, prettier/handsomer than you, nicer house than you, in better health than you. 

But we sometimes forget the other side of the coin...for someone, WE are the lucky ones, the richer ones, the better looking (duh! haha), having the nicer house, and yes, in better health than someone else that's looking at us thinking "why them and not me?". We really ought to look at just how blessed we are, not just us personally, but all of us. In our wonderful country, some of the poorest of the poor would be considered "well off" in a third world country. A small home would be a mansion to someone living in a dump site. 

In one estimation, America's bottom 5 % is still richer than 68% of the world's inhabitants!
I can't of course speak to the world's pulchritude chart, it is rather a subjective thing...

But back to being "lucky". I prefer to say "blessed". We are blessed that DH has recovered well from his stroke. We are blessed to have a strong support system of family and our extended family of close friends. We are blessed that we are able to walk together side by side. I think of many people who have lost a loved one to stroke, heart disease, and other illness and accidents. To say we are blessed is really an understatement. Humbled. In awe. Grateful. And I never, ever want to take one moment for granted.  

And this can't be emphasized enough! But add to this, vision changes!

Legions of Lesions

The weather in our part of the world has been absolutely stunning. So much so that people are walking around saying "What?" and "Huh? Is this California?" (It rains here a good share of the year)
 However, with it brings wildfires (months early), pollen counts off the charts, drownings because people forget it is not July and therefore the air might be 85 degrees, but the waterways are in the 60's if you are lucky, so dive in, and not come back up, as they are overcome with hypothermia.

It also brings health issues that are totally unexpected. For instance I have had a non-stop bloody nose today. Low humidity? Possibly. I do know that this has been a very bad day for energy levels. I am thoroughly exhausted and I can't quite figure out why. (Other than the fact that I hosted prom dinner for 11 last night) But still...then there are the lesions. My mouth is filled with them. So which came first, the lesions or the exhaustion? I am pretty sure there is a correlation.

The ones I hate the most are the roof of my mouth. It is hard to eat around the pain. They also seem to last the longest. Lidocaine helps, but only very temporarily.

My lips are also cracked and bleeding and feel very bruised. It has to be a lack of moisture in the air. I have to investigate this further so I can sue someone. Haha.

I would love to see one of those "If you or a loved one suffer from________________" lawyer commercials. If you have an auto-immune disorder, can you sue yourself?

"Hello, is this Dewey, Cheatum, and Howe? I think I have a case against me. Yes, that's right. I want to sue for damages. Especially the punitive kind. I think I owe it to myself to try and collect for mental stress. This body is making me NUTS. It is relentless! Also, can I get some sort of restraining order? This has GOT to stop I tell you! It is out of control! I am sick of being stalked by my immune system. Uh, would you take this on a contingency basis? Let's get the ball rolling!"

I have signed up to walk in our local Heart/Stroke Walk. I will walk alongside my dear hubby in the one mile survivor walk, then I will continue on the rest of the 5k walk/run to honor his survival. I am so excited for this. It's been a long time since I did a fundraiser walk for myself (fundraising for a cause). For the last few years, I have helped support and raise funds for close friends in their causes, partially because I didn't think I had the stamina to run very far, but I have been working for weeks to get better, and I think I am ready...I do walk 5 miles a day now, and will add some more running in the next couple of weeks before the walk.

I am closing in on 7000 hits on this blog. One thing that totally has me bummed is I am getting some really nice comments. Unfortunately they are advertising stupid spammy websites. I want to reiterate:I will not be a party to your golf site, your quilt site, your grocery store advert, or your chiropractor site. If you are trying to sell something, fugeddaboutit. If you have a worthy site that talks about something important (health, illness, etc) that is NOT trying to sell something, I will look at it. Otherwise, naaaahhhh. Anyway, have a great week stay healthy out there. Someone has to.

Dos and Don'ts of Steroid Use

Apparently the biggest "don't" is: Do not write a blog while on steroids. I can't believe how many typos I made in the original printing! What the heck?  Sorry. Think they are all repaired as of April 29th  LOL

Keep in mind, I am talking about legal, prescribed steroids that can, indeed be helpful. They are for the most part, a short term fix, although I know they can also be long term use for people who may have chronic illnesses. Doses can range from very small to mega-doses that can interfere with life in general due to their side effects.
For now, I am struggling with a fairly low dose steroid to combat the effects of my massive reaction to a steroid shot that was injected in my shoulder for a torn rotator cuff. However, the powers that be are now thinking it wasn't the steroid itself, but the binder in the shot. Now how the HECK am I supposed to know what to avoid? All they can say is: Don't EVER get a steroid shot again (pills seem okay). Alrighty then.

Steroids have a peculiar reaction all on their own. You have heard of course about 'roid rage. This seems to occur amongst abusers of anabolic steroids, such as those crazy body builders:
or as the Medical dictionary says:

An acute psychotic response—uncontrolled outbursts of anger, frustration or combativeness—of unknown pathogenesis seen in those who abuse anabolic steroids, typically in body builders;

I am not talking about those types, but the little sweet innocuous pills that are given for everything from inflammation to neuro diseases i.e. Bell's Palsy, to other auto-immune disorders to hives to cancer to well a whole slew of things. However, they have some drawbacks. They can make you a little teary to out and out angry and emotional;

So here is my Dos and Don'ts of Steroid use:

Do expect some emotional situations. You may cry at a Hallmark commercial.
Do NOT decide to sell your house and live off the grid. This feeling will pass.

Do expect to get hungry. Steroids can skew your blood sugar and make you think you are starving.
Do NOT round up cattle and eat them raw. Avoid the zoo, even elephants will look tasty.
Do tell yourself "I'm not really hungry, it is a mean low down dirty trick."

Avoid going to the Cheesecake Factory and ordering 3 cheesecakes to go "just in case".

Do not interact with maniacs, such as sales clerks or people that smoke. You may want to slap them for not waiting on you immediately and you might be tempted to take the cigarette out of the smoker's hand and shove it up their nostrils.

Do be nice to yourself, and forgive yourself for your short temper.

Do not engage police officers in shouting matches whilst on steroids. You may find yourself on the wrong side of the jail door, and it only swings in, I am told.

Again, I repeat: You are not really hungry. Drop the chocolate chip bag and move away. Slowly.

Don't attempt to purchase anything that can be used as a weapon, such as a baseball bat, a machete, or anything related to a kitchen utensil. Trust me, when you are in a steroid state, you will figure out how to use them for something other than their original intended use.

Do not, and I repeat, DO NOT watch anything sad on TV, you will spend the night crying. Things such as a Disney After School Special. Sesame Street. The Evening News. The Morning Shows. Kathy Lee and Hoda. What Not to Wear. This will only add to your emotional response.

Get and Give hugs and kisses, but only to people you know (and the mailman and gas station attendant do not count. They will not like this, even if you explain you are a little emotional.)

Remember, you are tapering down and you will get better. Sort of. I am personally still having the reaction but it is gearing down. The hot spots are less occurring and less prominent.

This is NOT me, but its how I feel. lol

Now, I must close. DH is taking me to The Cheesecake Factory because I was screaming it's name. Loudly.

Another day in Paradise err...Purgatory

No, I am not selling anything. I am giving you a unique opportunity to walk in my super cute patent leather flats. They are a size 7. If those don't fit you, put on some flip flops and come along.

 Yesterday I left the house not even imagining I would end up in the ER by 4pm. It was a crazy day. It started Tuesday, with an injection for my shoulder for pain caused be a torn rotator cuff. After that we went out to a movie, and dinner to celebrate our anniversary. Oddly my face was red and swollen but I wrote it off to a special celebratory cocktail. Yesterday (Wednesday) I got up and noticed a red spot about about a half dollar size on both arms. It didn't really look like a rash, but it was hot to the touch. As the day progressed it got bigger, hotter, covering half of upper arm, encircling it, cheeks flushed, and very red on my neck and chest. About 1 o'clock, I called the clinic and they fit me in. Doc immediately thought it was a reaction to the steroids in the shot Tuesday (a three way combo) so they gave me benadryl injections and more steroid and wanted me to wait 15 minutes to see how I was doing. I felt ok, if sleepy, and asked to leave. The nurse (who wasn't the original one so she hadn't seen me when I came in) was walking me out when my eye caught the back view of my arm in a mirror. Oops! It was 50% bigger above where I got the injection. She ran and got the doctor and boom, 5 people were in there, doing vitals, ekg, etc. They decided to call an ambulance and I ended up in ER,where the doctor there thinks I had an auto immune reaction not to the steroids, but to the solution added to the steroids! In other words they don't know. So on predisone, a beta blocker,an epi-pen to have handy, and an inhaler, and more benadryl. Home again home again jiggety jig. A very Long Day...

Now this is where it gets fun. If you have ever had steroids, they have a peculiar effect of skewing your appetite. You can get extremely hungry. I started gnawing on the upholstery in the car on the way home. DH was looking at me a little funny. I said "Let's stop and get a burger and fries!" Knowing I had not had a burger or potatoes (let alone fries) in months and months. We drove into our fav Burger place (where they do have some healthy choices, which I chose to ignore, but I felt I had to make the effort. If we had gone to, say, Dairy Queen, it would have been an admission of who the heck cares what we eat? There isn't anything healthy on THAT menu)

But, I digress. We ordered turkey burgers. Oh good, somewhat in control. Then Rosemary Fries. I turned to hubby and said "You do know of course those fries will not see our table, right?" He concurred. Then as we got our order I said "I wanna cone!" (I felt like I was about 4 years old) Since I cannot eat cow dairy, but yogurt seems to be less intense of a reaction, I had a small fro-yo non fat cone. I had to mention it was non fat so you could see how virtuous I was being.

Got home and discovered that our large fry container had only three fries. We were going to demand justice and yell at them for shorting us, but then we realized, we had partaken (partook?) on the way home. Oh boy.

It got worse. This is what I ate after my so-called meal.

Chocolatemandarinorangesorangejuiceblueberriescoldcereal(which I never eat due to carbs but what the heck!)applemorechocololatemorecereal and well, you get the picture! Good thing I weighed in at WW BEFORE the incident. The problem is, I am starting prednisone by mouth today and it's gonna be a long week. So...you are my conscience. In order not to eat willy-nilly, no matter how hungry I think I am, I will tell you what I eat every day until the prednisone dose is done (about a week to ten days) Yes, dear readers, I will be accountable to you. I would be accountable to dear hubby, but he would just eat crap with me to be supportive. hahaha.

So this morning, I had my usual oatmeal with apples, walnuts, cinnamon, flax seed, hemp seed (no not the stuff that makes you high and want more food silly) and almond milk. A respectable breakfast I might add, but, the day is young and we have to go get the prednisone this morning, then all bets are off. We shall see.

Oh yeah. This morning, my arms looked better, red has gone down, just swollen and bruised looking, partly from the injections, partly from meds I imagine. My face looks less red, and even though my chest is red, it's not hot and wicked. Well, I am hot and wicked, but that's just bragging.

One of the things that has worked for me while on steroids is to drink lemonade. The sour taste seems to dull my hunger cravings, so I will make a big old pitcher of Crystal Light.

Cannot go to the gym (may make the steroid side effects more intense, plus I might turn into a body builder with a high pitched voice...just kidding)  Plus, doc says no driving because of the Benadryl. Which is good, you have heard of "Roid Rage", well I wouldn't want to get angry and run some guy off the road because he switched lanes without signaling. So, here's the plan...I will put on my walking DVD and do that today for some exercise.

Chow for Now! (Of course I meant Ciao, but the food metaphors keep coming!)

The two shall become as one

Starting out my blog today with a SHOUT OUT to my beloved hubby. It is our 19th wedding anniversary today and I can honestly say, he is my raison d'etre. Look it up. Love you baby.  He is also the reason I started this blog...when he had a stroke a year ago, I needed a format to let people know what was going on, as it is incredibly hard to take phone call after phone call. And repeat it ad nauseam. So this blog was born. It has since become a forum for health and good eating habits to heal yourself.

Today I stumbled on an article that made me so excited I nearly spewed out my broccoli. I will not reprint the article (for some reason that is against the law :-) but I will print the link below. Briefly, it is about "heat-shocking" fruits and veggies to prolong their life. It is the most exciting thing I have heard coming down the pike in a long time. No chemicals. No irradiation. No accepting less nutrition to eat canned or year old frozen asparagus. But, like the singing star who has been in the business 22 years being deemed an "overnight success", I was crazy dizzy when I read that this has been in the making (as in being studied) for 15 years! What the heck? And you didn't share?????
It is NOT like blanching, and really it's not heat in the classic sense, as in boiling...it is instead a gentle warm water bath for a specified time,

Right now I have lettuce, leeks, asparagus, tomatoes, apples, mandarins, celery, beets, and who knows what else in my fridge. So after the quick dash to the computer to share this incredible news, I will be treating my own produce.

I will share the results with you in the next few days, as I will leave some untreated to see what happens. My control will be asparagus, because it takes a beating in the fridge. I am so excited, I cannot wait. here's the link:
Heat-shocking for fruits and veggies

Now go and take care of those yummies!

Also, just a word to nefarious readers: If you would like to link my blog to yours or vice versa, please put that into the comments. I will check it out first before adding a link. This is NOT a forum for advertising. If there is a product I like, I will talk about it on a case by case basis. I will NOT link to your advertisement of your services or business unless there is a really good reason to do so. I was rather put out to get some links sent to me and they turned out to be bogus or just plain advertising. This will not be tolerated (she said with her finger wagging like a librarian telling you to "shush!")
Speaking of products, I did find one that has been extremely helpful. (If you see a product here, it's because I like it. I am NOT making any swag off my endorsement!)

Anyway, the product is called Calmoseptine. It is OTC, but it might be hard to find at your local RX. It can be specially ordered OR you can go online at Walgreens or Amazon or any one of another sites.
It is for diaper rash, or other adult-type problems "back there". (I am trying to be as delicate as possible) Here is a link if you want to read more. It mostly has zinc and menthol so it is healing and cooling at the same time. Link: Calmoseptine

Invisible Diseases

 Today I decided to talk about invisible disease. You know the ones I mean. Have you ever seen a person park in a handicap spot and they look perfectly healthy? Kind of makes you want to say something, doesn't it? I admit, I have sat in judgement on people who I didn't deem "sick enough" i.e. they LOOKED fine! But what do I know?
 The funny thing is, I have an invisible disease. I should know better. I have fibromyalgia and Behcet's Disease, which also causes a rheumatoid-type of arthritis. I don't even like writing the word fibromyalgia, because it's something people make fun of as a "non-disease" and for many years has been treated that way by the medical community. In fact, it's not really a "disease" in the classic sense, but it is really described as this from the Mayo Clinic:
 "Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals." 
In the research of this, they are finding that people who have the symptoms may feel pain differently, or their nerves "mis-fire" in some way that causes overall pain. It seems to affect women nine times more than men. It seems to affect people who may have had trauma in their lives.
It is agony.
But, I try to ignore it, because it seems so stupid. Let me clarify that. It seems stupid because even though it hurts so badly, I don't want to think about it. I hate to whine.
But I look fine. I exercise nearly every day. I go to the gym. do I want to? No. Does it feel great? Yeah, when I stop. My physical therapist told me to pay attention and stop when it hurts. I told her it hurts before I get on the treadmill or the elliptical. If I stopped when it hurt, I would never do it at all. 
What does "it" feel like? It hurts in nearly every single part of my body every single moment. I have no idea what it is like to be pain free. I don't know what that means. This is a foreign concept.

Years ago when I was sent to a rheumatologist, she said I hurt because I was "fat and didn't exercise."
Another rheumy doc rolled her eyes at me and just kept loudly sighing and said "What now?" when I had a horrifying flare up last April. (I tried to make an appt at the time of the flare and couldn't see her until JUNE)

It wasn't until September that I was diagnosed with Behcet's. Have you ever had a canker sore? Before I started on meds for Behcet's, I had canker sores on steroids. One of the hallmarks of Behcet's is this: 3 episodes of canker sores in a 12 month time frame. Well, since I was a young child, I have had canker sores more like 6-10 times in a one month time frame. You can get these ulcerations anywhere on your body. Commonly in your mouth, they can also show up in your genitals. Now, with my meds, I still get lesions, but they are not as often nor of as long of duration (a few days long instead of a couple of weeks). Today, I went to a dentist for a root canal. Every needle stick, every scraped area, every "nick" of an instrument will result in a lesion. I am guaranteed of that. It is another peculiarity of the disease called pathergy. I also have lesions in my intestines, which have been mistaken for ulcers which can create a whole other agony of its own.

I have pain in my knees, making it difficult to walk up steps or even to get up from a seated position. I have had a painful shoulder going on its 8th month, so I cannot take a shirt off over my head, nor blow dry my own hair very well. I cannot even scratch my own back. I am exhausted to the point of tears some days.I cannot make a full rotation with my neck, try as I might. It makes driving fun when you are switching lanes.

BUT!  I am so lucky. My arthritis is better than it used to be. At one time, my hands were so gnarled, I couldn't make a fist or even open my hands out flat. I couldn't dig change out of my purse because my fingers could not make the grasping motion. So yes, I am lucky! I have an incredible support system. I have an awesome family and wonderful husband. I am blessed every day. I have seen many with much worse disease and my heart breaks for them. I stumbled on "The Spoon Theory" on a site called http://www.butyoudontlooksick.com/
It really sums up some things I feel every day but don't wish to burden anyone else with. You have your own crap! Forget mine! But it might explain a little tiny bit what it's like to have a disease, invisible or otherwise: (link below)

The Spoon Theory

It is very well written and may help you understand what some people go through day after day. Sadly, in reading the comments posted, a lot of them are mean-spirited and nasty. The old "walk a mile in my shoes" means nothing to some people. Guess you just have to let it go and move on.
Next time you see a person that doesn't "look" sick, be cautious. You might not see it, but it's there all the same.

Smile at everyone you meet, for you never know what pain they are going through.

New meds, new concerns

Never EVER read up on the meds your doctor prescribes. I am only half kidding, but DH has now been prescribed a few different meds and being the researcher he is, he read up on them.

"May cause blindness, whooping cough, measles, and or polio symptoms." Kidding!
But obviously there are some concerns. We went to his regular doctor and spent quite a lot of time with him. The biggest concern was the climb that his cholesterol and triglycerides took, and we were adamant about the NO STATINS and we stuck to that. Our dietary changes have been stellar.  His genes are not. They leave a lot to be desired.
Thanks Mom! Thanks Dad!

To be fair, both of his parents were smokers (at one time). His dad died young (from heart disease) and mom went to work full time so home cooking may have gone out the window. Hey, two teenage boys left to their own devices may not have been the healthiest choosers of food. And this was the 50's. Guess what came into vogue then?

And also:

(I say it like it's a BAD thing)
Then in the 60-70's there was a huge proliferation of convenience foods.

Fish sticks, Hamburger Helper, Mac n' Cheese, Tater Tots, canned fruit, canned veggies, frozen anything, Spaghetti-O's.. I am not sure I ever had a fresh green bean until becoming an adult. Green beans were supposed to start out frying bacon pieces, then open the can, boil the snot out of them till they were thoroughly mushy, then eat. Fruit? It was supposed to be a cocktail, open the can (don't steal the cherries!) add lots of whipped cream...voila! dessert! Salad? Special occasions: one head of iceburg, cut into wedges, pour blue cheese dressing on it! Yay! A salad! (Or chopped with tomatoes on a good day)

 I have tried to reverse my childhood bad eating habits by cooking almost everything from scratch, and very few canned items. If I do use canned items such as black beans etc, I read the labels and try to look for low sodium and no added sugars.

My son asked for a can of Spaghetti-o's one year for Christmas. He wanted to eat the stuff his friends had. He was so excited. Until he tasted it. "Yuck Mom! Why'd you make me eat that???"
But anyway, who knows why our arteries get clogged? Hmmm....Tongue placed firmly in cheek .

So we are paying the price of not only genetics, but years of not eating good wholesome food. I have bought my share of Oreos. I have eaten my share of hamburgers at McDonald', hey they used to be 5 for a buck! I used to drink soda (but only diet!! I swear! Not that that is much better). I have been around the heady smell of BBQ ribs and had to eat them (just one! or two at the most!).
Pizza? Bring it on! Taco Bell? OMG, so goooood and yet so baaad for you. Now if we are forced by circumstances to eat at fast food restaurants, at least there are some semi-healthy choices for us. As long as you don't pile on the cheese...or dressing on the salads.

Obesity is rampant in our country. Even people from other countries who come here to live apparently are suffering from high obesity rates because we have a lot of food that's fast, cheap, and oh so unhealthy. Even the so-called healthy lunches served at school are horrid. I have eaten lunch with my kids and grandkids and I am appalled at the unhealthy stuff they are forced to eat. If I was Queen of the world I would make every school have a garden (or at least fresh produce available), no canned pastas, no more pizza wedges the way they have now (I do believe that pizza made properly can be healthier) and no more canned carrot coins!!!!!!!

Now I will step off my soapbox and continue to try and eat healthy and urge others to do the same. I have been obese. It is a struggle every single day. Would I like to eat an Oreo (or a whole package) ? You bet! If it was in front of me. So, note to self. Don't buy crappy food. Don't say "it's for the kids!" You know you're gonna eat it too. And they shouldn't be either!

JUST SAY NO.