Monday, April 29, 2013

My Life with Lupus/MS

Life with Lupus/MS (background info)

I realized after putting up that last (and first of a series) post regarding Lupus/MS that I had never posted the following ... 

Why am I writing this?  Because I need to.  Not for sympathy but for understanding.  Most autoimmune diseases are misunderstood, not only by average people, but also by doctors who do not specialize in these diseases, they do not understand how they are diagnosed and some do not (in this day and age) believe they even exist.  Some, who claim to be a lupus specialist … have no clue … believe me, I’ve seen several like that! 
What are Autoimmune Diseases?  “With an autoimmune disease, your immune system attacks healthy cells in your body by mistake.  There are more than 80 types of autoimmune diseases, and many with similar symptoms, which makes getting diagnosed frustrating and stressful.  Usually the first symptoms are being tired, muscle aches and low fever.  The diseases may also have flare-ups, when they get worse, and remissions, when they all but disappear. The diseases do not usually go away, but symptoms can be treated.”
What is Lupus like for me?  It’s:
When you wake up some mornings and can’t get out of bed because the flu-like symptoms are unbearable.  If you’ve ever had the flu, you know EXACTLY what I’m talking about … achy muscles all over … down to your bones, chills, etc.
When your muscles ache so badly its painful to move much less walk … I’m not talking muscle aches like you get with exercise … this is more like pins and needles … like your muscles are refusing to work.
When your 16 year old son has to practically carry you down the stairs to drive you to the doctor for steroid IVs because for several days you haven’t been able to get out of bed because every time your feet hit the floor or you stand there is electrical like pains shooting down from your knees to your ankles.  Like your legs are hooked up to electricity!!!
When you find it difficult and painful, joints and muscles, to walk around your own yard especially if there are any inclines, you avoid the inclines!
When you can hardly make it down your front steps and down the driveway to check the mail … holding on to the stair railing for dear life because when you are in that much pain … pain that brings tears to your eyes … you tend to fall a lot.
When every joint hurts so badly … joints you never even think about having … like all those tiny joints in your feet … or every joint in your spine and worse every joint in your entire body.
When you are fine, or feeling pretty good, and you go out to dinner, or Scott has just said dinner is ready (he does 90% of the cooking in our house), and suddenly you’re so violently nauseated and faint you cannot eat and must leave the restaurant or not eat dinner with the family.
When you are standing in line at a check out and your throat becomes so suddenly dry you have to take a  water or soda out of the case at the check out and start drinking before you’ve even paid for it cause you feel like your gonna choke to death!
When you miss a football, baseball, basketball or some other event of your child’s because you’re just too ill to go.
When stairs become so unbearable but you can’t avoid them and, if in public, you move so slowly it’s embarrassing.  There were years where I avoided sitting up high in the bleachers at games of my kids because it was just too embarrassing trying to climb the steps.  You feel like your 100 years old.  Or those times when you do sit up high because you’ve been having a great day and feel wonderful and have energy, only to find when you stand that you need assistance going down or back up. 
When a migraine will come on and last for days and you know you’ve done nothing to trigger it and the medications that normally work don’t and you end up in the ER or even worse having to spend the night in the hospital.
When your body wants to go into anaphylactic shock just by walking down a laundry detergent isle in the grocery store … I literally have to hold my nose or avoid the isle entirely… just the smell of the chemicals, can be very overpowering.  My family has witnessed firsthand what it does to me.
When walking outside into the cold or being in an extremely cold restaurant or theatre makes you very nauseous.  I carry a jacket with me when we go out and always have a blanket in my car … there’s been many a time Scott or one of the kids has had to go out to the car to get my blankie!
When you have months and months of back to back infections: from bladder, to kidney, to bronchitis, to yeast, to URIs, to UTIs, eye, sinus … you name it … you just can’t shake it and before you know it you’ve gone through several rounds of antibiotics … to no avail.
When your legs from your knees down to your toes feel like you have them in ice water no matter how many pair of socks you put on or no matter if its 90+ degrees outside.
When you get so nauseated and dizzy you have to go lay down RIGHT NOW or you will pass out … no matter if your in the middle of shopping or doing some activity with your kids or family.  At my worst, I’ve had to leave full shopping carts (so don’t judge people who leave full grocery cards just sitting there) but thankfully most times Scott has been with me so I leave him to handle it.
When you have unexplained skin rashes that come out of nowhere and attack various parts of your body (sometimes just one location … like your hands or feet … but many times spread over different areas at the same time… thighs, face and neck, belly button area, underarms, knees … you get the picture).  When I say unexplained … I have had many skin scrapings done of these rashes and a couple skin puncture tests (where they puncture the affected skin down through several layers requiring several stitches to close the wound) … all with inconclusive results.  I’ve been asked by strangers how I got burned … that’s how strange the rash is and can look.  And it not only itches it is very painful.  Yes, I’ve even had them in my scalp, causing alopecia (serious bald patches) to the point you have to change your hairstyle to cover it until it finally clears up and grows back in … thank goodness it has always grown back in!!!
When you go to pick up a pitcher of tea or something else small and you drop because you’ve temporarily lost muscle control.
When you sit down to eat dinner and have no idea what the fork and knife are for.
When you legitimately cannot recall the name of something … a common thing, like a dishwasher or dining room ...or what you were going to say or even worse yet … you get lost in a conversation … literally lost.  It’s a helpless feeling.  It actually has a name ~    “lupus fog”.
When you try to walk for exercise but can’t because it’s so painful in both your muscles and joints you move so slowly … its agony.
When you break out in tiny bruises for no reason … bruises that look as if someone has touched you (the size of a fingertip)… all over your body.
When you hurt so bad you cannot handle being touched … it’s just too painful.
Now you’re probably thinking “Good Lord Have Mercy” … however, these are just many of the symptoms I’ve had … never all at once but many times several at the same time … like joint pain, muscle pain, fatigue along with some other symptom or any combination of the above symptoms. 
For the past 4+ years, I’ve been in ‘remission’, which as I understand it and my doctors have said … Lupus never goes into remission and stays and its not really a true remission as you still have ‘break through’ symptoms but not true flares, if that makes sense.  With my remission I’ve had … perfect blood work results (CBCs and Cardio CRPs), symptoms down to completely bearable with very very very few bad days and I’ve been off Plaquinil (a lupus medication that controls the symptoms) for over 4 years and have only had to have oral steroids occasionally, as opposed to IV steroids.  Before remission … the symptoms were DAILY … some days worse than others, of course, but DAILY.  It was my life … but it wasn’t much of a life most days.
I try hard to ignore any symptoms … mind over matter sort of thinking … but when I feel sooo bad … it gets very depressing … very!  AND resting … I’ve learned to listen to my body which is VERY important with any autoimmune disease … learned what my limits are and learned to make myself REST cause it can sometimes be the only thing that keeps me going! 
So if you hear me say how thankful I am that I am in remission … maybe you’ll understand that thankfulness because a life in a full blown lupus flare is just not much of a life.  Most days since I’ve been in remission have been normal … able to walk around my house and up and down stairs without pain … heck some days I can even run up or down the stairs like a normal person can and though a lot of times I need a nap to make it through the day, that’s not every day either.  I don’t take any of it for granted because I know that I could easily wake up one day and be back where I was.  For now, I pray that doesn’t happen and I thank the Lord every day that I living in a remission and am fighting this disease and not letting it control me.
No one can ever truly understand anyone’s pain, whether it be physical or emotional, unless they’ve walked in their shoes, but at least we can try!  So try to be understanding of anyone suffering with an autoimmune disease even when you can’t see the symptoms or understand why the symptoms come and go … just be understanding.

Crazy Lupus/MS #1

I’ve decided to do a series on my Lupus/MS symptoms and crazy happenings.  Things that I personally experience … maybe it will help some to understand what people with autoimmune diseases go through.  It never makes sense, not even to the doctors.

Imagine this … you’re in a hotel in a strange town ALONE and your husband has gone to do what he does when he visits his stores (in other words he’s working) and you have no idea where this store is, not even the address but you can get in touch with him if necessary.  You wake up feeling good, normal, get showered, dressed, hair blow dried and fixed, make up on … you feel fine but need a little boost so you go downstairs to the lobby for a cup of coffee.  Just so ya’ll know … I do not drink coffee on a regular basis.  Anyway, you’re pouring your coffee and all of a sudden you feel funny … odd.  Your tummy feels queasy and you start breaking out into a cold sweat.  You can’t think straight and then you feel like you need to sit down NOW!  You carry your coffee and its fixins over to the nearest table and chairs, sit down and try to finish making it but you’re now sweating a cold sweat bigtime and its starting to run down your neck and back.  You’re thinking “I’m gonna pass out or throw up”.   You sit there thinking “okay, I’ll feel better if I just sit here and relax” but NO it gets worse.  You really think you’re going to pass out right there in the lobby of this strange hotel in this strange city or throw up … maybe even both.  Your hands are shaking and your head is swimming.  You start to pray “please Lord don’t let me pass out or throw up, not here, not alone”.  You get up on wobbly legs and somehow make it to the elevators … leaving the coffee behind and barely managing to hold onto your purse.  All the while praying now that you can get back to your room without passing out in the lobby or on the elevator “Lord please just let me make it to my room”.  Somehow you manage to push the right buttons on the elevator because your head is swimming so badly you cannot even think straight and you’re still praying “Lord please help me”.  On the elevator ride up 3 flights your heaving and trying to breathe through it and not throw up or pass out … “breathe Debbie just breathe”.  You manage to get through your hotel room door and into the bathroom when your cell phone (which is in your purse) starts ringing … I knew I needed to answer it because I know its Scott calling to see if I’m ready … he’s done and on his way back.  I can’t answer it cause I’m throwing up and heaving like crazy into the toilet that thank the Lord I made it to.  I had had nothing to eat yet and only water in my system so you can imagine I wasn’t throwing up much of anything.  Finally … you manage to make it to the bed to lie down and Scott arrives.  He knows right away I’m having one of those episodes.  10 minutes later … I’m absolutely fine.  As fine as rain and sunshine …like it never happened.  This, my friends, is one of those crazy episodes I get that come outta nowhere … no rhyme or reason and usually at the most inopportune times.  This one was one of the scariest cause I was ALONE and out of my comfort zone (home).  Thank you Lord that I didn’t pass out anywhere in that hotel … ALONE.

This happens to me often … totally out of my control … while out to dinner, just when Scott gets dinner on the table, just as I/we are headed out the door to go somewhere, out shopping … many places and always always for no reason whatsoever!!!

Spring Robins

Spring Robins

I love birds … I really do … I love to sit on my front porch and listen to them chirp and sing and watch them fly from tree to tree … lots of trees around here.  Oh and I always keep my Hummingbird feeder full.  My favorite though is the Red Bird, as my Mama called them, you know them as Cardinals.  I think I love them mostly because she loved them.  As a little girl she made them seem magical because when we would see one she would say “quick make a wish” so I thought they were a magical bird that could somehow make wishes come true!!! 

BUT … I do not like when a bird comes a knocking, or pecking I should say, on my window and will not go away.  I’ve had a Robin doing just that on my library window sidelight for going on 2 weeks now!  At first I thought it was a little crazy and just didn’t realize there was a window there and kept flying into it but no … it was just standing there tapping it.  I managed to get one video of it after many tries but haven’t been successful at photographing it … the elusive Robin it is.

Anyway … it has decided that my porch is the perfect spot for a nest … just above the sidelight window on the window trim ledge.  That would be fine and dandy if it didn’t leave its poop EVERYWHERE … all over my porch decking, all over my wicker furniture, all over the cast iron railings … EVERYWHERE!!!  I came home after being away for 4 days and OMG at the poop everywhere … it was pretty disgusting.

Well I’ve washed down the porch and all the furniture 3 times now and I’ve tried scaring the Robin off by clapping my hands, but that is only a temporary fix as she’s right back to work once I turn my back.  I’ve even knocked down her nest 3 times.  Don’t worry … she hasn’t laid her eggs yet … thank goodness!!!  If she had I would have to just deal with all the poop until the babies were born and learned to fly.  I AM NOT THAT CRUEL!!!

I did a little research online looking for a natural way to get rid of unwanted birds nesting and found that mixing Apple Cider Vinegar and Red Pepper Flakes and spraying the area works.  So I’ve tried it this morning … I will let you know if it works.

Afternoon: Well ya'll the spray of Apple Cider Vinegar and Red Pepper Flakes DOES NOT work ... there is an almost perfectly constructed nest back up on the ledge ... looks like I'm outta time to try anything else as they (yes they ... I did research and both the male and female Robins work on constructing the nest ... this explains my seeing two ... I'm not crazy LOL) have a nest almost completed and its time next to lay those eggs so I'll just have to put up with the poop for a few weeks longer until those babies fly the coop.  

Friday, April 12, 2013

Juicin' Hints

I’m sorta new to Juicin’, since I only began in mid January of this year, and there are some things that I’ve learned along the way that might help you out if you are also new to Juicin’ OR want to start Juicin’.  I don’t profess to be an expert … these are just some helpful hints I’ve discovered.

First off ~ Leave your Juicer on your countertop, otherwise, you will find an excuse every day NOT to juice if you have to drag it out every time.

If you buy fresh produce in bulk, like I do, most times it will not be prewashed: such as Carrots or Celery.  I wash them ahead of time and place them in ziplock baggies in the fridge.  Important Note: I do not zip the baggies closed or else the veggies will go bad really fast, I’ve found.  I think it might be because unlike leafy veggies, you can’t run them through a salad spinner after washing so you can’t really get them good and dry.  It really makes Juicin’ so much easier if you don’t have to wash everything each time before Juicin’.  It takes me about 30 minutes to wash an entire 5 pound bag of Organic Carrots and that’s enough Carrots to last a couple weeks!!!  Oh!  And you do not need to cut them though I do cut mine in half.

I also wash and trim my Cilantro and/or Parsley, dry it in my salad spinner and then store it in glass mason jars.  Yep, I have found that it stays fresher MUCH longer if I store it that way instead of in a ziplock baggie.

Look what I found in my Parsley a couple days ago ... a clover flower.
(I think that's what it is... it gets purple flowers in it)
  Anyway, I discarded it cause I'm not sure if its even edible.
When you go to juice your Cilantro or Parsley, wrap it around a Carrot or Cucumber (and tie it if you can) before running it through the juicer … you’ll get more juice out of it that way and less waste.

For my Spinach, I buy the prewashed (triple washed) Organic Spinach so it’s always ready to go.  I grab a large handful and squish it into the chute of the juicer and release (not allowing it to go all the way into the juicer down to the blade) and then ‘chase’ it into the blade with an Apple on top … the Apple will hold down the Spinach and keep it from going straight into the waste part of the juicer and you’ll again get more juice from it this way.  Less waste.

I run my Apples/Pears through whole, unless, of course, they are too large but I’ve found that most Organic Apples/Pears are on the small side and I’d say at least 90% of the time I do not have to cut them.  IMPORTANT NOTE: I have read conflicting arguments about whether or not it is safe to juice apples whole or to remove seeds first as the seeds contain trace amounts of arsenic … BUT I’ve also read that the amount is so minute that it would take HUGE amounts to ever do you any harm … so you be the judge.  I prefer not to remove them as it’s a pain plus I’m pretty sure that apple juice companies don’t take the time to deseed them.

Don’t be afraid to put Carrots or Celery or any other veggie you don’t normally like in your juice … believe me, I cannot stand raw Carrots or Celery but in my juices, can’t EVEN taste them!!! 

Clean up is pretty easy too ~ take your Juicer apart as instructed in your owner’s manual and wash each individual piece with dish soap and steaming hot water (to disinfect).  Mine can go in the dishwasher but since it takes up most of the dishwasher I usually wash it by hand.  Its just easier for me but you may find that its more convenient to run it through the dishwasher … it does have to be rinsed first though.

Friday, April 5, 2013


This post will be a continuing one as I experiment and try different smoothies ... all of which are healthy!

Banana Peanut Butter Smoothie

Want a healthy breakfast on the run?  Or maybe a healthy snack.  This basic Banana Smoothie recipe is awesome!  

No ... a smoothie is not the same as juicing as most Smoothies contain dairy, either yogurt or milk or in my case Silk (soy milk), which isn’t really dairy as in being from a cow but I don’t like milk so it works for me.  The other difference is that juicing is nothing but fruits and veggies … period.  No added ice or milk products … just pure veggies and/or fruit.  

But hey ... Smoothies are awesome and healthy too!  And I still juice even if I smoothie!
Banana Peanut Butter Smoothie
Banana Peanut Butter Smoothie

Blend a Banana (mine was a large one so you may need 2 if they are small), 1 Tablespoon of Peanut Butter (I use Skippy Natural … it’s as close to homemade as you can get without all the crazy additives), 10 oz Milk (I use Silk Very Vanilla cause that’s what I drink) and 6-8 Ice Cubes.  Enjoy!
Blueberry Banana Smoothie
Blueberry Banana Smoothie

Blend a Banana, Handful of Frozen Organic Blueberries and 8 oz Silk (I prefer Very Vanilla).  You don’t need ice cubes for this one since the Blueberries are frozen.  Enjoy!

Banana Coconut Smoothie
Banana Coconut Smoothie

Blend a Banana, 1 Tablespoon of Peanut Butter, 8 oz Silk Very Vanilla, 1 Tablespoon Coconut Oil, 1/2 teaspoon Chia Seeds and 6-8 Ice Cubes. Enjoy!  Very delicious and with the added Chia Seeds ... extra healthy!

Banana Avocado Smoothie
Banana Avocado Smoothie

This one was a little different.  I had half of an Avocado left over and it needed to be eaten so I thought ... why not add it to my morning smoothie.  The smoothie was a little thicker than normal and the taste was okay ... not wonderful but not bad either.  I drank the whole thing because even though it wasn't delish ... all the ingredients are good healthy stuff.

Blend a Banana, 1/2 Avocado (peeled, of course), 8 oz Silk Very Vanilla, 1 Tablespoon Coconut Oil, 1/2 teaspoon Chia Seeds and 6-8 Ice Cubes.

Monday, April 1, 2013

Roasted Parmesan Cauliflower

I found this recipe on Pinterest which originates from  ... I didn’t change much about it and it was soooo good.  Roasting veggies is so easy!  I did follow the original recipe too closely and bout burnt mine (original recipe called for cooking it a total of 25 minutes, which apparently is way too long for my oven which is normally spot on) so I have adjusted the recipe accordingly.  It's very similar to a recipe Scott's Nana gave me years ago which I've made quite a bit over the years: Steamed Cauliflower with Parmesan and Butter ... yummmm


1 Head Cauliflower
3 Tblsps Olive Oil
1 Med Onion, thinly sliced
6-7 Sprigs Fresh Thyme
2 large Garlic Cloves, thinly sliced
Sea Salt and Freshly Ground Pepper
Grated Parmesan Cheese

Preheat oven to 425°. Cut Cauliflower florets into 1/2 inch slices.*  In a large bowl, gently toss Cauliflower with Onion, Thyme, Garlic, Olive Oil, Salt and Pepper.  

Spread Cauliflower mixture onto a large rimmed baking sheet.  Roast for about 10-12 minutes.  Sprinkle with Parmesan and roast until cheese has melted.

* It's not easy to slice Cauliflower as a lot of it will crumble, just toss those crumbles in too.  Believe me you will want every last nibble of this Roasted Cauliflower.