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.

Annual Labor

I struggled to find a title to adequately describe an annual event that is not exactly happy (as in "Happy Birthday!" or "Happy Anniversary!") yet it is not sad either, such as in honoring a loved one who died on a certain date.

Today, April 6th, marks the one-year-ago-today since The Stroke.  I honestly never thought a year ago, that I would be seeing this date, one year in the future. I think back to that horrifying day when our world crashed down around us. I think back to the year since seeing how far we have come.

It is also a "graduation" of sorts: Yesterday we had what was (hopefully) our last visit to the Stroke Clinic. While in the waiting room, an older man and his wife and most likely their daughter, were sitting across from us. His wife was talking to him, but I noticed the daughter was agitated. She went up to the desk and said "Look, he is still in pain, please do something!"

A person at the desk said she would get a doctor to come out immediately. The doctor came out and spoke to the man and his wife. The wife said they had been at the hotel and he felt pain in his head and leg. He asked the man where the pain was, and the man could only grunt and point. I realized that this man had lost his ability to speak. My heart broke for them. My heart broke for the daughter who was so stressed out over her father's condition. Oh, I have been there and still am in many ways, trying to articulate why my beloved DH still has pain.

I know! I know! We are so lucky! I have heard it a million times (and said it to myself). But when you hear that phrase, it somehow negates the fact that you are indeed suffering. It diminishes your private pain. We are indeed "lucky" (which I actually take to mean as "blessed").  When we spoke to the doctor, he said that DH is no more at risk for a (second) stroke than those who have never had one. That was especially sweet to hear. He doesn't have motor issues, nor cognitive issues. He has regained a good share of the lost vision. We eat very well and he takes proper supplements.

Then the bad news. We got back the report for his lipid panel and it does not look as good as we had hoped. He has been off the statins for about 4-5 months and the cholesterol numbers reflect that.
I was so hoping that by changing his diet, we could control his numbers. Genetic make-up is nigh impossible to change, laddies. (I thought it would sound better in a Scottish accent)

Going back on statins to me is not an option. He has had nothing but agony while on them (and possibly the ongoing muscle and nerve pain now that have hung around). I am stumped for ideas. The studies seem to show that statins do not prevent heart attacks. What about stroke?  In talking to the doctor yesterday, we learned that having a completely blocked carotid artery is not that unusual. He told us they even remove them surgically sometimes. That was a shocker! I knew they sometimes put in stents or did roto-rootering of the arteries (not as common as they once did) but removal? I guess if it is concreted in like an oil well in the Gulf, well, why have it at all? We discussed what he can or should not do. (Our concern was how to keep the plaque from loosening and jetting off into the brain to possible cause another stroke.)

NOTS:

• No Chiropractic neck twists
• no crazy sudden neck extensions

CANS:

• Carnival rides (really???) 
• gentle neck exercises
• massages 

Surprisingly, he told us that young people are more at risk for neck issues because of carotid artery tearings. Their veins are more susceptible to the elasticity. Wow, another reason to get old, your veins get all hard and tough.

He then told us a story about a patient he had that had suffered a stroke. He was morbidly obese, a smoker, he was an extreme out-of-control diabetic and he was demanding to go home against his doctor's wishes. The doctor said quietly "Either he is back shortly or will die. But I see in you (DH) that you are doing all the right things. You've changed your diet, you don't smoke, you keep your weight low, you do all you can. That's the success story we like."
I can offer up my heartiest "Amen!". I think you do all that you can to control the environment around you (and obviously we cannot control everything) but doing what you can to live as well as you can, and the other stuff is left up to chance.

Last year we lost a close friend to pancreatic cancer. While he was going through treatment, his wife was already starting the grieving process. The life they had was gone. She feared life without him, so much that it was haunting her every waking moment. Someone said to her something like this "Well, you could get hit by a bus tomorrow."

I think it put into perspective that none of us have any promise about how long we have here, but to live life to the fullest with the time we have. Don't grieve for the time you don't have tomorrow, but rejoice in the time you have today.


Don't spend time on petty arguments or silly stuff. Tell your loved ones you love them. Do something nice for someone else. Spend time with those you love. Step outside your comfort zone and do something daring. Have a blast! Read a book. Knit a scarf, then donate it. Write a letter (not just an email). Spruce up the house. Eat healthier. Get exercise. Get a haircut. Buy a new outfit. Lose some weight. Kiss your darling. Cuddle your kids and grandkids. Write your memoirs so your kids know who you are. Throw out crap. Get rid of hatred in your life. Forgive someone. Dance. Recycle. Sign up to be an organ donor. Plant some flowers. Buy some flowers. Plant a garden or buy Really Good Produce. Smile and say good morning to people walking by. Tell silly jokes. Forgive yourself. Stop smoking. Curtail your drinking. Ride the roller coaster. Take a walk. Talk, really talk, to your spouse/partner. Go to a movie. Make out at the movies. Play a board game. Be stupid. Be smart. Make a dumb face in the middle of an argument and crack up the other person. Be kind. Be sweet. Do something crazy. Kiss. A lot. Be thankful.
And dang it! have a Happy Day. Any old day.