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November 5, 2014

Lupus 2014: November - Things People Without Lupus Say

I am realizing a repeated theme is going to be frustration. While this blog is about my personal journey, being a caregiver to my child with lupus is going to crop up at times. While her story is hers to tell, it overlaps with mine at times and highlights some of the issues that people face - like what people without lupus say!
These are things I have heard within the last month.

1. "But she doesn't look sick. You think of lupus and you think of hair falling out. She has long healthy hair!" 

No, that's not how this works. Lupus can cause hair loss and some medications exacerbate it, but not everyone with any type and severity of this illness is walking around with extreme hair troubles. However, thanks for the reminder that our hair may start falling out. We like being reminded of every possible thing that can go wrong. 

2. "I  didn't know they had blood tests for lupus." (followed by a doubtful stare)

Well, they don't diagnose it based purely on how your hair looks. Now you know. If you'll only accept the word of medical professionals, why are you asking me how it was diagnosed? Just because you haven't heard of something does not mean it does not exist or hasn't been discovered since the last time you did research on the topic. Oh wait, that's right! You never researched it. That explains why you have the right to show doubt over what I, the person with lupus, just told you. 

3. "Her wearing a hat is against school rules. That's why I told her to leave it off." 

That hat is to help guard her against the harmful effects that fluorescent light and sunlight can have on people with lupus. Long sleeves, clothes washed in sun protectant, hat, and sunglasses all help in the war against inflammation, which can lead to damage to internal organs. I have my own rules. They include teaching others about what can happen if you violate the law concerning the medical needs of children, and do not contact a parent while doing so. I am the mom. In my former life, I was a bear. Sometimes I get easily confused about which life I'm in now. Please don't confuse me. It happens most often when someone does something that makes my child cry. Mkay? 

4. "Don't die." 

Well darn. I was hoping to catch the next semi, right up until you made that demand. By the way, thanks for the reminder. We like being reminded that this could kill us. Or that we might lose our hair. Was there NOTHING between losing hair and death that you could think of? How about "I hope you don't develop a rather mild sensitivity to monk fruit." Why did you have to pick death? Or my hair? I like life. I like my hair. Occasionally I question my love for one or the other, but it passes, okay? 

5. "I have a friend who ate ground up dehydrated squirrel livers and hasn't had any symptoms of illness since." 

Thanks for the info, especially since you later mentioned that your friend wasn't sure it was lupus. Since you asked if I wanted you to dig up your friend's contact information, I can also tell that this is a very close friend that you trust and have a strong relationship with - enough that you feel they have this miracle cure that nobody else has, and they're providing that possibly life saving information for FREE! If you dig up the contact info, of course. I appreciate that. False hope that easily attainable and low cost permanent cures are out there? Just what suffering people need. Aren't you special. 

6. "I heard the steroids for that make you gain weight." 

Umm, YES!  That's what every ounce of this is. I actual like this comment, because it's pretty true.  I have photos of when I was thin. It was right before I started the medication. You can't see them though. They fell down behind a bottle of ground up, dehydrated squirrel livers. DID YOU JUST EAT MY DONUT????? 
On the other hand, if it's not a good day, I'll have to say thanks for the reminder that one of the only things that helps us also makes us fat. Fat, bald, dead - with friends like you, who needs enemies? 

7.  "I don't know if it's just me, but you seem pretty emotional lately." 

Of course it's you. You ate my donut! 

8. "Those open sores in your mouth aren't anything to do with lupus, or they wouldn't hurt. We need to run tests." 

They are open sores inside my mouth. They hurt. They're not anything else. I've already been tested up the ying-yang. Literally. And repeatedly. I associate them with lupus because I only get them during a lupus flare. In fact, it's often my warning sign. That and feeling like I got hit by a truck, and vomiting in my sleep, and peeing blood. But let's focus on the occasional little open sores because THAT must stop.

9. "How can you afford to have lupus?"

Well, what happened was this. I was considering paying for my children's college education. I also wanted a shiny new car. Then I said to myself, maybe a better idea would be lupus. Apparently, I didn't do research properly, because it's a lot more expensive than the label said. Turns out it's not really affordable. Silly me. But thanks for the reminder that I probably can't afford a new hat to cover up my impending hair loss. Thanks.

10. "I know how you feel. I have pollen allergies."

I sympathize. I really do. Such allergies can be intense and miserable.  However, you don't know how I feel. Even people with the same type of lupus cannot truly say they know how the other one feels, though they can often sympathize with some of the same issues. However, everyone handles the diagnosis of a chronic illness in their own way. Even the same chronic illness. That is because we are all individuals, with different ideas, beliefs, goals, emotional responses, pain responses, etc..  

Ah, life with lupus. I'd say we need to do away with such comments, but they really do keep us on our toes and can so easily be used for entertainment purposes. One of these days I'm going to be recording when someone says something ridiculous, then I am going to tie them to a chair and force them to listen to themselves on repeat until they get it.

This is not to say that sincere questions should not be asked. People need to learn more about lupus. Please just use a little courtesy when asking your questions, and don't roll your eyes at us. We may not roll them back. 

Copyright 2014 G. Locke









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)