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.