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October 3, 2014

Lupus 2014: October - Getting Tired

I did quite well for a while, as far as Lupus goes. I've been working steady and feeling quite chipper, even able to go outside and enjoy the sunshine and not wear my sunglasses much, but that is falling apart now.

I woke up a few mornings ago and groaned when I walked past the mirror, hoping the rash I saw on my face might somehow be the result of an allergy. No such luck! The next day, the familiar nerve pain began to intensify and I noticed how heavy my coffee cup felt. By the third day, I wondered if I'd make it into work with my stomach cramping so bad, but I did. Hurrah for sheer willpower!

I'm VERY grateful it's the weekend now.  I missed an appointment with the rheumatologist, as they never told me when the next one would be. They were going to call, but calling me to say it's the next morning just doesn't work out too well. Instead of missing work, I missed the appointment and that may not have been the brightest idea, but it's also quite unfair to give practically no notice at work. That made me mad, as appointments are tough to come by. It will be months before I can get in again.

During my neurology appointment, I went into specifics about how Lupus is affecting my memory and how it gets hard to function mentally later in the day. I'd hoped there could be something to improve this issue, but she said there is not. However, keeping flares down helps keep cognitive function from declining as fast, so when it's more possible, I likely will go back on medication. It's a weird position to be in - I can afford the medication best if I'm working, but if I'm working, it's nearly impossible to continue working while on the medication. I may feel more alert while off it, and the morning hours are tremendously better without it, but evenings are rough. I'm really stuck on how I want to proceed. There seems to be no perfect answer, not even a good answer.

Faith is keeping me from going nuts. No matter what is going on around me, there is joy in singing and it lifts my spirits. Occasionally I am home alone and will sing and dance like crazy. Those moments bring so much happiness lately! There is a song called "Come Let's Go Up To The Mountain," and I can't help but start spinning and dancing when the violin picks up! It surprised me that I didn't get dizzy and fall, but maybe that's another positive of not being on the medication? Who knows, but why question good things, right?

Uncertainty. Pain. Fear. They all shrink away in those moments alone with my Creator. I should try to keep that level of closeness even when I'm not alone.

That's all for October, folks! Be blessed. Unashamedly, immeasurably blessed.

September 12, 2014

Lupus 2014: September - Medication Break

For a number of reasons, I am giving my body a break from medication. It started with extreme kidney pain, which is so normal that seeking medical help is rarely done, but it wouldn't go away so I went to my family doctor's office. They didn't have an appointment open for days, though I stood right there in severe pain and let them know the doctor said if I needed to come in for something like this, tell his secretary he wanted me seen. Instead, she just asked the nurse if they could squeeze someone else is, and of course the answer was "no."

At the emergency room, they could see the kidney stone during a CAT scan. I chose to go home and try to let it work through. Thankfully, it worked, though right towards the end, it blocked me and almost sent me back, but it passed as I was getting ready to go back to the hospital. Yay!

I learned that one of my medications is known to cause kidney stone and another possibly contributed, so I called my neurologist for instructions on quitting and an appointment is set to try a different med. Since the appointment is far away, I decided to just quit all of them. They help, but make me more fuzzy and tired, which is not a good thing to be while working.

Working in pain is not fun, but I am still breathing and that's a positive! However, many work days are spent getting up, going to work, then going to sleep within an hour or so after getting home. It's very consuming, as I end up sleeping up to 14 hours a day. However, I am more alert in the hours I am awake. It's an odd trade off - no meds and more pain, but without the groggy feeling for a few good hours per day, vs being awake longer while on meds yet feeling asleep on my feet with less mental clarity. What's odd is that I'm accomplishing more now, despite being awake for less hours.

That's all I have for this month.  The muscles in my hands and fingers are screaming at me as I attempt to type! Ouch…

August 11, 2014

One More Smile

One More Smile
In Memory of Robin Williams

I did not know all the clouds had gathered
And blanketed you in their tears
You were so quiet as shadows descended
And swallowed you up in dark fears

If I had known perhaps I would have asked
And you would have agreed for a while
To give me your sadness and take my joy
For a few more days of seeing you smile

But now I must simply say farewell
And thank you for every time
You, without knowing my own clouds had gathered
By giving your smile, formed mine.

© August 11th 2014 by Gina Locke

August 5, 2014

Lupus 2014: August - Things I Have Seen

My computer broke, so there is no photo to go with this month's post. Perhaps I will go back and add one in the future.

Much of our world is in upheaval. My heart breaks for what is happening in different areas. Rockets falling from the sky, airplanes shot down from the sky, people looking up to the sky and asking for peace, understanding, relief, asking why. Ebola, fear, death, hope, hands reaching out to help the hurting, bury the dead, right the wrongs, to kill, to heal, to find, to comfort, folded in prayer, to aim weapons, holding out water, held out with the hope someone will reach out hold their hand in return.

It's maddening, and making me think of things I have seen. What I can do. What I have done. What I can possibly contribute in the future. It's interesting to ponder what things get put in our path that move us in our lifetime. Sometimes one can see something everyone else sees, but it only moves one or two people who see it. How odd. So what have I seen? What memories stick in my mind, things that Lupus hasn't yet stolen from my memory - even some things I wish would disappear from my mind?

I've seen the moon high in the sky at mid-day.

I've seen an elderly man take his last breath without any family around for comfort, and nobody to claim the body, just two state workers sipping their drinks as they carried him out in a body bag.

I've seen flowers blooming like crazy in spring in a wild, unpopulated area of Alaska.

I've seen a young child sobbing quietly as she stared out from behind the screen door of a home, looking forty years old instead of four.

I've seen the caskets of murder-suicide victims side by side.

I've seen a homeless man go defend the food of his sleeping friend from a thief.

I've seen the Northern lights ripple and wave above me.

I've seen a man run and hide on the porch to avoid being shot.

I've seen the face of a man who put a gun in his mouth and pulled the trigger, but survived without brain damage.

I've seen a seed planted and grow up to a stalk, and produce ears of corn that feed people and animals.

I've seen children scream for their mom and dad as they were wrongfully taken away by the state on false accusations.

I've seen people that do not know each other pitch in like family to help each other after a tornado.

I've seen an entire  apple orchard go to waste after the owner died because the state seized the property in the absence of a relative, and allowed nobody access to the fruit, although some in the town were hungry.

I've seen a millionaire whose only source of happiness appeared to be the manipulation of other people's lives.

I suppose I could go on, but  perhaps the point is made. Humans can be nasty creatures, filled with venom and hatred and unable to be happy even with the things most strive for in the quest for happiness. However, we have been given, freely, that which we need. It is our own greed, insecurity, and distrust of our ability to live in peace and with enough that prevents us from having the best our Creator designed for us and designed us for.

As can be seen throughout life, there are great moments. That moment when someone reaches out to hold the hand of a stranger. To perform free cosmetic surgery on the face of someone who put a bullet in his mouth. To help neighbors after a natural disaster. To defend the possessions of a friend, even when you have nothing yourself. To plant seeds in community gardens to feed the hungry. To speak out for justice. To pray.

Everyone can be a part of something. Somehow. No excuses.

That's what I've seen.

July 8, 2014

Lupus 2014: July - Blossoms and Attitude

Whenever I see a flower or plant blooming where it seems impossible, the phrase "blossom where you're planted" comes to mind.

This little bugger chooses to grow in a rocky, mountainous area of Utah. I decided to climb up a little ways up a mountain to get a decent view of another mountain for a picture and instead, found a better photo in this little plant, which probably grew all over down in the valley. However, this particular one wasn't down in the valley. It was up there. With me. It was a moment. Despite feeling like crud, I chose to take that little stroll, knowing the physical price, and found the spiritual view to be more significant.

So that's this month. The past few weeks held a lot of work. My new medications wait until I'm done with travelers sickness and the stress of a few changes, and then I start Cellcept and a steroid. The nurse should be calling me back in a bit to discuss it, as this was meant to happen a while back. Right now, everything is sore and my kidneys ache. That's what happens when you say "Well, I feel like crud anyhow, may as well climb mountains and make it worth it." HA! I also went outside in full sunlight and saw an airshow and stood outside watching fireworks. It was great. My body is slapping me around something fierce, but as long as you know a flare is going to happen, may as well jump in with both feet.

Blossom with attitude, mkay? DO IT! I'm telling you. Do it. *smile*  (then go lay down and pass out, which is what I just got up from doing)

June 13, 2014

Coping with Lupus: Daily Life

The little things in life quickly become overwhelming when dealing with pain on a regular basis. This list is a few of the things I feel help ease that burden a tiny bit.

I will add to it as time allows. 

1. Brushing Hair - Brushing hair often means additional aches and pains, and sometimes does not feel worth the effort. However, brushing your hair helps keep your scalp healthy, so try to keep up with this task on a regular basis. Find an extremely lightweight hairbrush. I personally love the ecotools brand hairbrushes. Mine is the smoothing/detangler brush. This one is very wide and flat, which means it covers a large portion of hair at once. It is the lightest weight brush I have ever held.

Take advantage of days when you feel better, and if you feel better, put your hair in a style that you love. Looking your best when you can does wonders for how you feel and helps create good memories. We need more of those in our lives!

Do not be afraid to ask a family member for help. A spouse or child may enjoy spending some alone time with you. Some great moments of laughter and sharing of thoughts have come in those times when someone is brushing my hair and we are joking and chatting about topics that come to mind. Some very interesting hair styles have also been created.

2. Morning Coffee

Those without lupus may not realize how many simple things we really struggle with. How tough can that cup of coffee or tea in the morning really be? If you really want to know, you can't unless you have this, so don't question it, mkay?
 My coffee pot is a Hamilton Beach Brew Station. There is no pot of coffee to lift in the morning. There is a built in area that holds the coffee, and you simply hold your cup against the large button on back in the morning.
No dropping a glass pot full of coffee when you try to pour it!
Speaking of dropping things, choose your cup wisely. If you do not have to use two hands now, you may have to later, so pick one that you can wrap your hands around without being burned. Do not rely solely on your own senses if you have nerve damage, as you do not want to suffer burns. Have someone test the cup for you if needed. If you heat or reheat your drink in the microwave, make sure you choose a cup that stays cool during microwave use. Be patient, and once you figure out your favorite mugs, keep them separate from others so you remember which ones to use in the morning.
Tea: I used to think that electric teapots were the epitome of laziness. I laughed so hard the first time I saw one, and figured they were for lazy people with money to waste. Tea is my favorite beverage, but it seemed insulting to think there were people who wouldn't bother to heat water on the stove. Now it makes perfect sense! My electric teapot keeps my water hot for a long time, easily pours without my having to move it much, and keeps me from having to lift and move a pot of water to and from the stove on days when my hands and muscles do not want to cooperate. Fill it with water, flip the lever down, and there is hot water. Later in the day or evening, simply flip the lever down and the remaining water gets hot again. Genius!

3.  Kitchen Cleaning and Dishes

Refrigerator cleaning is a nightmare for lupies! Let the refrigerator empty out, get some lovely soul to clean it, then line everything with plastic wrap. Now you may put more food in. When you spill stuff or when it gets messy again, you can move stuff to another shelf, pull away the plastic wrap, toss it, and lay down more plastic wrap. Now it's clean again! Hurray! 

Is your garbage can a wreck? Repurpose it for outside use and buy a new one for indoors. You don't need to mess with that, unless you are feeling really energetic. If you are, share the wealth. Now that it's clean, how do you keep it that way? Get yourself a clear garbage bag. They are sold as lawn and leaf bags. If you do not care about looks, buy whatever color you want. The clear is simply to keep it from being seen and keep you from grabbing it up when you change the actual garbage bag. Put the clear bag in, pull it down over the sides, and if you're the efficient type, tie it on the side so it stays down. If you're the "even my garbage must look amazing" type, get yourself some designer duct tape in a fabulous color, cut it into little garbage can shapes, and use them evenly across the container to hold the clear garbage bag down against the sides of said container, then stand back and admire your handiwork before taking a photo to post in the comment section.
Now you can put in your real garbage bag, and any messiness will go to the liner, which you can change as often as you like. Unlike the cheap liners which can be bought, lawn bags are tough and do not easily tear. These are oversized and will cover the garbage container on the outside as well as the inside.

Dishes are such a pain! That's why you should donate the majority of them to charity, your neighbor, a new couple, or anywhere other than your own kitchen. Only keep what you need to use for how many people live in your home, for one day, plus a few extras in case of a broken one here and there. This way you know you will never have to clean more than x many dishes at once. Oh, what a relief! They will never pile up past a certain point. I have found that washing them as they get dirty helps.
If you are hesitant to do this or feel you may need them in the future, pack them in a box and keep them put away.
In the meantime, keep paper plates available for your worst flares.
For those who are concerned with a lot of waste, buying sturdy "disposable" picnic dishes can be helpful. These are generally higher priced than paper plates and made of plastic, but those who travel or are on a tight budget often use them as regular dishes, washing them and using them until they crack. They are great because they do not break like glass if you drop them, but when they do break, you do not feel bad about it, nor do you feel bad if you are too worn out to clean one day and do end up tossing one. It depends on your budget, your personal views, and what works for you.

When it comes to scrubbing the floor things get rough, but ask yourself - am I going to eat off of this? No, you're not, and nobody from "Clean Floor Judging" is likely to be coming over soon, so quit panicking. Perfection isn't the goal. Simple cleanliness is the point. Throw treats on the floor and let the dog lick it. Wait, that's not quite good enough. Let's go for a little more here, shall we?
I am the queen of sliding. I don't just fall, I do tricks on the way down. It's like watching dancing with the stars, without the stars. So you know what I do? You really want to know? Of course you do, or you wouldn't be reading this. This is moderately embarrassing, but it works. I pull out my computer chair, which is padded all over and has wheels. I put on my fluffy socks with the grips on the bottom. Then my butt sits in the chair, the mop goes in my hand, and I roll myself around, pulling with my toes or feet, and clean a little bit of the floor at a time.
Occasionally, I will push off on the table, the fridge, or a wall if I'm getting too tired and am bent on finishing.
Playing music while working really helps. It distracts from pain and helps lighten the mood. Besides, nobody wants to mess with someone who is wailing away out of tune while rolling around in a chair with a mop, still in their nightgown and occasionally stopping to grab chocolate. It simply isn't done, so you also get some alone time.

As far as cleaning goes, if there are other people in the household, be sure they are pitching in and doing their share as much as possible. Do not try to overcompensate for your illness by overextending yourself in the housework department. It will only lead to more stress and more time down. You didn't choose to get lupus, okay?

4. Opening Medications and Remembering Them

Fighting with a bottle of medication isn't the ideal way to spend time. Try buying a pill box that allows you to fill medication for the week, and fill it at a time of day when your hands are most cooperative.
Using a piece of silicone pad, such as the type used to lay on a cookie sheet to prevent sticking,  helps get a grip on medication bottles, making the top easier to turn.
Always test different ways to open your medication bottles. Some seem difficult, but quite often, the instruction to "push down and turn" really means just that. Many people will try to wrap their hands around the top very tight and pull down and turn, which works, but is also painful with arthritis. Quite often, a pill bottle may be opened by placing the bottle in the palm of one hand, placing your other palm flat on the top of the bottle, and them turning the bottle with your bottom palm! You don't even move the top, you move the bottom of the bottle, with an open hand, and just let your top palm loosen up on the lid, and POP! The lid is off that bottle and you never had to bend your fingers at all.
For remembering what you have taken, a desk calendar - the large type that lays on your desk with tear away months and spaces on each day to write, is also a handy way to keep track of meds. This takes dedication and is more suitable for those who are able and willing to write down every medication, every single time.
Some people use apps on their cell phone, but if you are dependent on having it written, this may not be a good idea, as you may forget the password to the cell phone, lose it, it may get shut off, or the application may crash. It is always good to have a hard copy when you'd like a record of anything that has to do with what goes into your body.
For those taking morning and evening medication, some find it helpful to turn the bottle upside down in the morning after taking a med, then right side up in the evening when they take it again.
A combination of these may be helpful. For example, I use a pillbox for my daily meds. However, when I have a short term therapeutic med added, I do not use my pillbox. I write it on the calendar, especially since one is twice a week for twelve weeks. I would forget what day I took it if I tried using a pillbox!

5. Eating and Using Utensils

Eating getting messy? Ain't it great?  Sometimes I feel like a toddler, picking stuff up and mashing my palm up against my face. Mmmm, yummy food! One of my lovely daughters walked into the kitchen once and there stood I, licking milk out of a bowl like a cat. "MOTHER! What on earth are you doing?!" Well, I tried to pour the milk in a cup and it had spilled, so I got a bowl, and I couldn't pick up the bowl without spilling it, we were out of straws, and I really wanted some milk....but I wasn't about to say all that so the only logical thing to do was say "I FELT LIKE BEING A CAT, MKAY?" And I encouraged her to break out of her shell and try it sometime. There is no law that says you must always drink your milk out of a hand held cup. They may make one if someone directs the right person to this writing, so please don't do that.
What I do encourage you to do is invest in small containers of milk and juice, rather than large ones, and definitely buy yourself straws. Carry them with you for when you go out. Keep them in your car. If you're female, carry them in your purse. If you're male, get yourself a man purse and carry your straws in your man purse. It is so much better to have a straw available than sit there thirsty in fear that you are going to knock over a drink in public, or drool it all over, or whatever your issue is at the moment. Tremors, numb face, weak hands, pain, you know the drill.
Oh, and then there are utensils. Sometimes it plain old hurts to lift a fork back and forth. Plastic forks are friends! So are finger foods. So is coming out of your shell and not being afraid to tell people you have problems if you are eating around other people and this becomes and issue. Learn to say "I have lupus" and then explain what you're doing. If you need to ask a restaurant server for a tortilla so you can wrap your food like a burrito and eat it with your elbows on the table, do it, and tell your companions why you're doing it. "I have lupus and right now, it hurts too much to eat with a fork right now, but I'd hate to waste this delicious food, so I'm going to eat it this way!" If you're already hurting before you go out, consider your menu choices and try to choose foods that are easier for you to handle.
If you tend to drop utensils, there is something called a universal cuff that you can wear on your hand. The handle of your utensil slides into it and hold the utensil on your hand. Pretty nifty, huh?

6. Preparing Food

If you have a food processor, congratulations! Your life is already ten times easier. The rest of us are jealous. So is it worth is to chop up some taters or veggies if you have to spend a week recovering? That's an issue many people face, and it is sad. Here are a few things that can help you get around this issue and still have fresh veggies.

Cutting and mincing everything but meats: Consider what type of knife you are using. I use an ulu knife. The handle is on top, with a curved blade under. This allows one to use a rocking motion when cutting, which takes a lot of pressure off the muscles and joints used in other types of knives. There are other knives out there that may be easier to use and have more safety features, which you may wish to try. I've used an ulu for years. A two handled cutting and mincing knife is a rocking knife with an ulu concept, and this may be just the thing for those who enjoy hands on cooking but need a knife that eases the stress on your hands and joints. If you are accident prone in the kitchen, I suggest you try a rocking knife with safety features rather than an ulu or two . If you love cooking and are experienced with knives, you may love using an ulu.

For meat, the best tip is to make sure the meat is slightly frozen. Most people try to say a very sharp knife works best. Perhaps that is true if you want thin slices, but I am not talented enough to make thin slices of anything. Leave that to the butcher! They will do it free if you ask. Always ask If  I am cutting meat, it is because I want cubes or something of that nature. I've found that my long, deeply serrated bread knife if marvelous for cutting meat and works better than the meat knife than came with the knife set. Go figure!

Soften some things before chopping. Do you want some home fries, or need to cut up potatoes for use in a recipe? Undercook them in the "baked potato" setting of your microwave so they are still firm enough to cut into the shape you desire, but soft enough to slice through with ease. A little bit of experience will let you get the timing just right. Simply add them to your recipe a little later than it requires for raw potatoes, or just proceed with making your home fries! I love making fried potatoes this way. It takes very little time and they turn out so delicious. You don't have to wait to get that golden brown crunch on some of the pieces. Mmm...

Broccolini, also known as baby broccoli, is a great substitute for broccoli. It is sweeter and much easier to handle, and definitely much easier to chop. The beautiful deep color once it cooks is very appealing. I stir fry it with some olive oil, fresh chopped garlic, salt and pepper, without even bothering to chop it at all.

Spend a little time learning recipes that require little time to prepare. Quick little stir fries, cold dishes, etc.. I have a book of recipes for salads. A whole book. Of just salads. Did you get that? We tend to think of one food as just one food when in reality, you can look around your state, your nation, your continent, your world, and discover that just one food has a zillion different variations and forms. Don't be afraid to try new things. You'll be expanding your horizons while experiencing new things and making your life easier. How awesome is that?

7.  Getting Ready to Go Somewhere

Are you struggling to get ready for the day? Give yourself time. Getting ready for the day begins the day prior. At least. Hang clothes you wear most often in your closet for easy access. This saves extra folding, ironing, and rifling through drawers to pick what you want. There are hanging "drawers" you can put in your closet. They are simple cloth, and you can put your clothes in there and easily see what you have, without having to lean over dresser drawers. They are great for your personal items and clothes that do not easily wrinkle, or if you do not have space to hang all your regularly worn clothing.
When you have the energy, pick out your clothing for the next day. Have a space chosen where you keep the complete outfit. This includes every single piece of clothing, including socks, shoes, and any chosen accessories. If this means having a special box for your daily ensemble for work/the days you need an outfit, make it happen. This will help keep you sane.
Make sure everything you need to get ready in your dressing room/bathroom is set out. This includes your washcloth, toothbrush, toothpaste, hairbrush, pins, makeup if you wear it, lotion, anything you are going to use. The last thing you need is to be searching around in frustration for something and getting worked up and stressed out. Solemnly vow the night before that you will think only kind thoughts about the person who will inevitably move one of the items you so carefully set out the night before, and try to remember that vow as you're stomping about in the morning sputtering and trying not to impress everyone with your imitation of a screech owl. And for the love of Pete, make sure there's toilet paper on the holder! Those helping care for those with lupus who also have IBD and are reading this - take note. There's something we often suffer from called low-TP. Don't let anyone suffer from it. Keep the toilet paper flowing!

When you first wake up, just lay there. Give yourself time to mentally adjust to being awake again. How do you feel? Is it a "Crud, not another day" morning or is it better than that? If it's a rough morning, try to consider that it might get better. Something, somewhere will likely happen in your day that will be better than this moment. If it's a good morning, then great! Wiggle around a bit. If your body didn't already let you know, wiggle around a bit. See how it feels. Open your hands, flex your arms, your feet, bend your knees. Sit up carefully when you do decide to try it. There's no point in jumping up and figuring out that your kidney is trying to shoot out of your spine. You want to figure that one out gradually.  Now aren't you glad all your stuff is already laid out for the day?

8. Pain on a Daily Basis

How are you today? "SHUT UP!" No. We don't say that. It's not nice. Typically, nobody actually wants the real answer, either, because it's usually not a typical reply when our bodies are acting like bowls of crisped rice cereal on crack and our doctors have us on this drug and that med and tapering off steroids and if not, then maybe we just got done trying the newest colon cleanse or drinking some enlightening tea from far far away or we're in so much pain that we just lost all contact with reality one second before they asked? 
So it's a miracle we so often just say "Fine, thank you, and you?" and go from there.
No, we're not fine. We're just being polite most of the time, because it's too much to explain.
And that's depressing.
So how do we deal with that?
Everyone has their own ways, and nobody really has the perfect answer. You have to find what works for you. Sometimes that changes. My foundation is my faith, and that never changes. What does change is what I need on a regular basis. That might be a hug. It might be a pain medication. It might be having people leave me alone.
I am not separating pain and depression here, because they go hand in hand. Pain, by its very nature, brings sorrow. One can have moments of laughter and joy while in pain, but typically, pain brings tears and frustration, and attempts to overcome the pain.
Sometimes it helps to remember what pain is in order to make it less scary. It is a function. A physical response. A part of your body is telling your brain that something is not functioning the way it is supposed to function. Message received. True, it happens over and over with this disease. Stupid disease. But it's not some creepy, unknown source. Understand that. It means no harm. In fact, it is meant to be helpful, so the problem can be figured out and taken care of. So far, nobody has figured out how to solve all the associated problems with lupus, so we can't get the messenger to stop saying something is wrong, because we can't fix the problem.
Maybe that will happen one day. But for now, this is ours to deal with. And we can. We are. Don't be afraid to acknowledge you hurt, or afraid to acknowledge and have joy when you do not hurt. It's okay. Start writing down what helps you in whatever moment you are in, and go back and look at it from time to time to help you remember what helps you cope. Counseling? Friends? Being alone? Chocolate? Did you need medical intervention? Music? Sleep? It's different for everyone.