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April 8, 2014

Lupus 2014: April - Hope Swirls

This last flare set me back something fierce, but it is diminishing and hope swirls again!

An emergency kept my rheumy from seeing patients on the day of my appointment the other week, and rescheduling seems unlikely anytime in the very near future. That means he missed seeing this at its worst - and I'm not sure how I feel about that. Ulcers filled my nose and I felt like the hunchback of Notre Dame every time I showed myself in public. The temptation to hide out at home definitely hit, but instead I forced myself to work five days straight at the peak. Didn't I just say, maybe as late as March, that I learned my lesson? Apparently, I forgot that lesson. Perhaps a sticky note on my face for next time?

It is interesting to sometimes sleep for fourteen hours straight and still struggle to wake up, while fighting insomnia for long hours at other times. However, the quiet nights alone with my thoughts bring calm to my mind in times when my body wants to fight the world. Sometimes I go off in a mindless daze watching funny shows on television and at other times I read, but quite often, it's just sitting there in the dark, listening to the sounds of the night. Occasionally I'll stand outside and simply watch, feeling like the guardian of my home. It's funny how we imagine so much goes on at night when we don't see it. Burglars crawling about, little animals, the door knob rattling for an unknown reasons, those little noises we hear while we're in bed - well, guess what? When you stand outside for four hours in the wee hours, you figure all that stuff out! Gravity makes the doorknob rattle or the window covers move when the wind hits just right or a truck on a nearby road goes by at the right speed. A little bug crawling make a pretty giant noise on a dry bush on a quiet night. Light reflects from very far away, making odd shadows. The strange people walking by on occasion aren't burglars - they are people walking home from their jobs. They go by at the same time every night and if you look close, they still have their uniforms on.

It's fear of the unknown that makes people think the worst. Fear that makes people afraid to trust, worried, afraid to live out loud.

A little dash of fear is healthy and keeps us safe. Any more than that, and life is just not vibrant anymore. I prefer hope. That very thing I fear. Confusing, huh? That's what it is though. I'm hopeful right now because my pain is diminishing. I'm afraid it will come back before I get a good break. I'm hopeful that I will learn to deal with my fear and not let it continue to steal my joy more than it has. I'm afraid I might not be successful at that. I'm hopeful that I'll find another job that my body will cope with. I'm afraid that will never happen in a million years.

So - my main hope for this month? Stay vibrant, despite fear.

My picture for this month is swirls of vanilla scented cupcake topped with coconut hope. I'm silly like that.     Enjoy!




March 10, 2014

Lupus 2014: March - Ducks, Hedgehogs and Flowers

I am tired.

Not only have I been overdoing everything, but I'm in full flare. The trigger? Who knows. It could just be life, but I have a feeling that sixty degree weather one day followed by wind chills below zero sure aren't helpful.

This stinks.

My kidneys hurt. My face hurts. Life hurts.

It's still been fun! It's just break time for a while, if one can call such a thing a break.

The side effects of the nerve pain medication have been kicking up, so it is time to start seeking out natural alternatives for when that gets to be too much to handle. I still have some of this from a while back, but getting it together is another matter, along with finding out more and putting it together with new symptoms and new medications. This isn't nearly as fun as running around at soccer games and going to work, but if I'm careful, some of that can still be managed. Well, we'll see just how much. It all depends on how intense things get this time around. That's what I despise about this - not knowing. No solid plans, not being able to tell people yes or know, not knowing if I'll be able to do something as simple as cook in a few hours, or if I'll be biting my lip trying not to utter words that don't flatter the English language. I just keep reminding myself to not get bothered by the changes and go with the flow. Be a duck. Float along with the currents. Ducks are rather nice, right? Just call me Super Duck, able to float in hot water. I hope.

On a bright note, sleep might be more comfortable now that a new mattress set is sitting here as pretty as can be. The tattered old had been purchased from a place that was "going out of business." Did I know it was a scam and that the place had been going out of business forever? Yes, but a cheap mattress was needed, thus it was obtained. I glanced away from the giant yellow "All Items Must Go!" sign as I walked in, knowing the sign lied. After all, how bad can one mattress be? Let me tell you, never ask that question. It will be answered! It was stupendously bad. I'd lay in bed, in that state of  suspended animation when you just don't know that you're out of it, yet you really are, when BOING! A spring would pop and send my body into that startle reflex you typically only see in newborns. Moving that rotted springs infested mattress out during the replacement led to much fear, as it meant exposing the underbelly of the beast. I picked it up slowly, and it only took one hand. I discovered that, thankfully, the springs were popping right out of it through the bottom! Had they come out the top, I'd be experiencing kidney pain for reasons that aren't lupus related. The new mattress set is now in place and thanks to lupus, I have no idea if I am sleeping better or not. When I'm in a flare, I'll sleep while in a box on top of a running camel, but it definitely is easier to lay down on and to get up and down from the thing. You know, as opposed to a camel. Or a mattress bought from very questionable sales persons.

So for now, that's how things are going. I have a rubber duck in a blue cape sitting on my computer desk, along with a ceramic hedgehog. Why do I have a hedgehog? I don't know. Does one need a good reason to have a ceramic hedgehog? I hope not, because I can't think of one.

I did manage to make it back to services at my place of worship. My new medications prevented me from going for a while. I tried, but kept having to leave because of nausea or exhaustion. The final straw that made me give up came when I just flat out fell asleep and snored. Not a gentle little snore either - the type that lets everyone know that you are toast. Toast that fell buttered side down, beyond salvation. Take your Bible and depart the sanctuary in shame. Of course, I am me, so some giggles went on as I walked out. However, it was nice to adjust to the medication and return. I didn't even bother to try to hide my shameful self in the back rows, and marched straight up to the front.

Both physically and spiritually, everything may be a struggle right now, but it's a work in progress. I'm still a bit hesitant to tell associates "I have lupus." Most people are unfamiliar with it and on the rare occasion that I have said something, they either don't grasp the concept that I am telling them because I am saying "no, I cannot do what you just asked me to do, even though I have done it for you  before, because I am feeling horrible right now,"   or they want to talk about it. While educating people is great, my fear is that people will think my symptoms are the same as other people's, and they will judge someone else they meet who has lupus by what they see in me. That person may be more mild, or they may be more extreme. What if they themselves get diagnosed and they see me limping around with a face rash and nose ulcers and think this is what their normal will be, and they don't see that this part isn't constant?

Well, this is life, huh? This is part of why I stay tucked away a lot. Some people think I should get out more, but I disagree. I go out as seems fit. I need to be "in my closet," away from everything, to be able to think, pray, process life, and develop as a human being so that when I do get out while I feel decent, I am able to enjoy my time with everyone and use the time in a productive manner.

A recent event reminded me that good things do sometimes happen out of sight. I walked past my clothes closet the other day and the door was partially open. What I saw made me smile and I related it to what I've been going through lately. A process. What is going on with the flowers being dried in the photo below? They've been struck down in their prime. Strung up. Hidden in a dark place, and what are they doing? Becoming stronger. Deepening in color. Toughening up. When they are ready, they will be taken out and while they won't ever be the same as they once were, they will be beautiful and useful. It will have been worth it. I can only hope that a fraction of that concept may end up being true of me. I sure don't feel beautiful right now, but I've learned that sometimes, you gotta leave beautiful up to the flowers, and let your soul and actions be the beautiful things. I'm trying.  I'm rather jealous of the people who are beautiful both in body and spirit, walking around exuding grace and love all over the place while I rub Vaseline up my nose and slide sticky notes in books just so I'll remember to pray. Becoming beautiful is definitely a process. I hope we all get there one day. Preferably before the third trump.



© 2014 G. Locke

February 1, 2014

Lupus 2014: February - One Month of Medication

Ch-ch-ch-changes!

I don't know how to start, so let's go to the beginning.

My new medications for this issue are Plaquenil and Lyrica. The rheumy's office called to tell me my Vitamin D apparently bought a one way ticket out of town so he gave me a mega-dose prescription once per week until that gets settled.

Now, as you may remember, my biggest fear centered around the known issue of possible nausea while taking the first medication. Did it happen? Yes, but not as bad as I feared. I do have to eat when I take it, which is interesting and somewhat counter-productive, as I cannot eat before noon without my IBD kicking up. Perhaps if my symptoms chill out, it won't be as big of a deal. However, the nausea has gradually decreased and I can eat less now, so maybe I will eventually be able to handle taking this medication with only a cracker and knock out that problem. I really cannot explain the other ways it makes me feel, apart from the dreams. They are listed as a side effect that some complain of, but I'm rather amused by them. Yes, they can be somewhat disturbing, but that's half the fun. Why have dreams if they are going to be boring? So long as they are not nightmares, bring on the mutant children with giant toenails that act as protective shields!

Now for the Lyrica. The insurance company made me jump through hoops, and then set the hoops on fire. They also charged a lot of money, as co-pays have doubled on that particular medication. Yikes! However, I ended up getting it and the results are like I remembered. This works. It wipes me out, but works. For now, the exhaustion isn't equal to the exhaustion I get from pain, which is a different type of tired. That is difficult to explain unless you've been through this. From experience, I know that eventually, my body will tolerate this medication, the dose will have to be heightened, and at some point the side effects will outweigh the benefits and it will be off my list of things to take, but for now? It's helping immensely.

Vitamin D: I have no clue if it's doing anything. It's a pretty color, but I hope that shade of green isn't what made it so expensive. It's also one of the prescriptions that is expensive and has a newly doubled copay, which seems to be most everything we've picked up lately. As a side note for those of you that may be as scatterbrained as I am, it's not a good idea to check your bank account in the store after you've made a pharmacy run, then exclaim "Wait, let's hold off on groceries right now, I just spent all my money on those drugs!" From the looks of things, that statement may be vastly misunderstood by the lovely-but-shocked looking couple standing next to you.

How do I feel? The Lyrica definitely is helping with nerve pain. Ahhhh...that is relief! In January, I only managed to work three days out of the month. This month, I pulled off nine work days, with five of them being in a row, all in the last week. I closed out the last day with over fourteen hours. A full work week hasn't happened in 14 months. This is a definite improvement! Mentally, there is a little more clarity. In a way, it's a bit like when you first wake up from a deep sleep and start being aware of your surroundings, but you still can't make them out all the way. I feel like I've missed a lot, but still confused on what all has been going on. It's not a good feeling. I'm really happy to feel like I'm waking but, but horrified at this dawning realization of what I've missed. I'm overjoyed that I seem to be able to do things and want to keep doing them. To be involved more in the things for my children - see them perform, help with fundraisers, get a gift basket together and show up at the dorm room right before mid-terms because hey, now I'm awake enough to think of these things and write down that they're happening, right?

My excitement over having a bit more energy and clarity might be pushing me to overdo things just a tad. Anyone who knows me understands what "just a tad" is when it comes to me admitting I might be pushing myself "just a tad." During a fundraiser that involved delivering phone books,  I started feeling some very intense bone pain. Sit in the car and scream bone pain. It made me mad, but I know that if I go numb it's better than just sitting there hurting, and the only way to go numb is to make myself have more pain, so I got out and kept going for, oh, a couple more hours.

My shoes are wearing thin, but do you know how great it is to be able to move and walk after all this time?

Actually, it's hard to not walk. That is rough. I've given up on going to my place of worship because I can't sit still that early in the morning, thanks to the new medications. I'm up going in the restroom, still fighting the effects of having eaten that early, along with the extreme restless feeling it brings. Moving around eases the side effects. After three times of going and having to get up multiple times, it became so frustrating that it seems best to wait until things calm down with my body before going again. It bothers me quite a bit, but such is life. Today, I spent some quiet time thinking about this, which, like bananas, blue skies, monkeys, and unsharpened pencils, let to me sitting here singing songs. There isn't much that doesn't make me sing, in case you're wondering! As I sat here in a semi-daze singing away, with the events of the past month buzzing in the back of my mind, the tiredness, wondering about the future, being happy, being confused, the words coming out of my mouth really made me smile and want to just glow with happiness and new resolution. They are words penned by Joseph Hart way back in 1759, yet here they are today, reaching out to touch my soul:

I will arise and go to Jesus,
He will embrace me in His arms;
In the arms of my dear Savior,
Oh there are ten thousand charms.

Come, ye thirsty, come and welcome,
God's free bounty glorify;
True belief and true repentance,
Every grace that brings you nigh.

Now that you know where I am physically, this is where I am spiritually. Ready to get up and run into my Savior's arms. Not that I haven't before, but because sometimes in the midst of all the insanity of this world, I find that I've meandered away. Not intentionally, just that I look up sometimes and see that I'm further away than I thought.

Seems I put more miles on my shoes than I realized.


© 2014 G. Locke

January 3, 2014

Lupus 2014: January - The Emotions Begin

My first post on this topic was mere hours ago - yesterday - but it already feels a lifetime away.
For those interested, here is the first post: Lupus 2014: A New Battle Begins

I did not expect today to be so emotional. It isn't as if this diagnosis was completely unexpected, yet it still feels unreal. For hours, I've been trying to pinpoint why I'm feeling so emotional and I've finally figured it out.

Hope.

I'd let go of hope. For years prior to recent ones, I held onto hope. Every time a doctor dismissed symptoms or changed their mind about an awful "likely" diagnosis, such as cancer, and even when they started telling me to seek counseling and some said it was all in my mind, there were times I could believe this wasn't real. When I was in pain, I tried to convince myself that I was nuts. When I had a job I loved and could no longer do it, it was devastating, but when I felt better, there I was, working again. When I would go into a flare and no longer be able to do the things I loved, it was terrible, but then I'd start feeling better and look at jobs, and say "Aha, here is something you can do!" I'd go out and do it, only to once again succumb to physical limitations.

Eventually, reality kicked in. I'd find myself getting excited over a job opportunity and tell myself "Stop it. You know what will happen. It isn't fair to do that to an employer." I'd fight to keep hope down, knowing it would only cause me pain later when a flare kicked in and took it all away.

I'd see something I wanted to paint and knew my hands and mind would not work together to finish the painting. My oils, my brushes, they went into the trash. My brushes...once an extension of myself. I still ache inside when I think of how the brush felt in my hand...those quiet 2 a.m. moments with the smell of oils and linseed and fresh air blowing in the open window, the soft hair of my favorite fan brush against my cheek - my own little quirk to check for the perfect feel of "ready to use."

The worst feeling was giving up things I wanted to do with my family. Knowing I would be too tired. Too sore. Replacing them with things more achievable, but knowing in my mind the things I'd wanted to do before the "It's fun to do this together with Mom" ideas became replaced with "He/my friends want to go out tonight" 'requests. It went so fast.

All this time. I'd taught myself to find joy in other ways, in looking for moments instead of grand occasions. If I couldn't take the girls swimming anymore, I'd teach them to dream about the ocean and the things inside of it. I couldn't work for the newspaper anymore, but I could ceremoniously pass on my leather work bag to my college bound daughter, show her the first photographs I had published, and pray she one day carries her first published work in the same bag with the same smile on her face and then some. That's happiness.

For myself though, I've had little hope over the last years. I've felt so resigned. I knew something was very wrong and that I wasn't getting taken care of medically, and figured that was that. If they didn't know what it was, they couldn't fix it, and there were some very bad times. At one point, I was in the hospital for almost a week. Bruised and sore, I came home and thought to myself  "I'm not going to make it back to my ocean, it's going to end in this state."  I'm not currently in my home state and at that point, gave up hope of eventually going home. 

Which brings me back to today. What I'm feeling, what I'm fighting.

It's hope, plain and simple. Having a diagnosis means it's possible there's hope for help, and being sick all these years has taught me to be leery of hope. I took my first dose of hydroxychloroqine (generic Plaquenil) today. This is the medication that is supposed to start helping with my lupus symptoms.

I've been fighting against hope for so long, I'm afraid to let myself feel it again. I didn't fight against it because I didn't want it, don't think that. A human being longs for hope, always. What I did was smoosh it down to prevent myself from going crazy from the anger and disappointment that came every time something good happened in my life, only to be ripped away because my body wouldn't cooperate.

That's my battle right now. By nature, it's hard for me to be unhappy for very long. I laugh a lot and see humor in almost everything, while also being a pretty practical person. My reaction the first time a doctor said lupus was "That stinks, but if the awareness symbol is a clown, please diagnose me with something more lethal." Yes, I have a terrible sense of humor and I am scared to death of clowns. Clowns and elbow macaroni. There's a logical explanation for the macaroni. Very practical. I promise.

Time will tell how this all plays out. For now, I'm taken back by the depth of today's emotions. I'd really love to sit down and cry, but it seems like this is the type of cry that needs to be done with someone who gets it, and there's nobody here like that today. I don't know anyone around that has lupus. There is someone at work, I've heard through the grapevine, so perhaps I'll seek that person out. I don't know. This seems like the time for a good friend, but I've been rather isolated, so I don't know anyone out here. Being ill has that effect. When I work, I come straight home and sleep. I don't go to social events. I've been too tired. Too busy trying to keep breathing.

But - I did manage to start medication today at 10 am like I said I would.

My next update will be in February, unless something major happens in the meantime.




© 2014 G. Locke

January 2, 2014

Lupus 2014: A New Battle Begins

It only takes a minute for words to change lives. To be technical, the ending part of the sentence after "lupus"  went "and if it's not lupus, it's so identical to lupus that it needs to be treated like lupus." This diagnosis came on the last day of 2013, which is why I'm sitting here having a staring contest with a bottle of hydroxychloroqine today. Generic Plaquenil. Everything has been rather foggy lately, but I am still clinging tightly to my strong dislike of taking prescription medication. I know I need something to help. Anything to help. Will this medication be something that pulls me out of this strange world I've started feeling lost in - this confusing mixture of pain, wanting to do more, be more, to reach beyond the fog of exhaustion and resume the life I once enjoyed? Laughing with beautiful people, walking for miles, climbing trees, being deeply interested in the lives of others?
I want to reclaim it all, but know this isn't going to happen because of a pill. It doesn't stop me from staring at the bottle and dreaming though. Magic. It exists, right? Because somehow, something invisible seeped into my bones and stole the very energy from within my being, and that seems a lot like a type of magic to me.

This diagnosis has been a long time coming. I'm not ready to go into the struggle of the past years just yet. That will come later. There simply isn't time to go through the years of insanity and what they held - the tests, the lack of tests, the false accusations, being sent for psychological testing, and if you want a good laugh, being sent home with a CD of whale songs and told to wear "tinkling bracelets" to soothe the pain.

Pain. It is a constant. At one point I had a broken arm. My doctor tried to send me to a counselor to talk about childhood trauma, telling me that I was too young to be in so much pain and that a broken bone would have been painful enough to send me in at the time of the accident. I finally went to the ER, where they diagnosed me with a broken arm. I have so much pain on a regular basis that sometimes when there is a major injury, I cannot tell it apart from my regular pain, or it will take a couple days to realize it is something that needs to be checked by a professional. I've learned that one should become somewhat of a drama queen. Standing there calmly  and saying "I believe my arm may be broken" or "I believe I am blocked with a kidney stone as I'm unable to go and prior to that, it was pure blood" doesn't garner much belief or action when unaccompanied by tears and angst. Despite knowing this, I find it impossible to fake emotions so I've learned to be brisk and request they simply run the tests for what I know is going on and skip all the questions. This means that when I'm seeing medical professionals I do not know, (or the one  I do know who is sweet but can't admit when he's wrong) nobody is frustrated and they can see what I'm talking about, losing the need for the skeptical looks we normally start passing back and forth and the typical open ended sentence structure that starts flying as we attempt to politely yet adamantly disagree with each other on what the tests are about to prove.

Thankfully, I now have a rheumatologist that understands these things. I also have a neurologist who is very attentive, thorough, and caring. Having doctors of this nature is a top priority when one is in pain and trying to process the ins and outs of multiple symptoms and going through the process of figuring out if there is or is not a disease going on in your body. In my case, my primary doctor was only inadvertently helpful, in that he appeared quite dismissive and unwilling to take my symptoms seriously. This led to a few very frustrating years. I believe he wanted to be helpful in the beginning, but did not know what to make of me and without being able to pinpoint a diagnosis, treated only symptoms. This is almost laughable when you consider the many and varying symptoms of lupus. I couldn't possibly go in for everything, so I opted to ditch all medications and try natural remedies. That worked like a charm - but only if you don't believe in charms. (am I being smart alec enough yet?) Trust me, when you're walking around feeling like your liver is being stabbed, blood is coming out of you at an alarming rate, your bones are popping so bad that you can be heard walking three rooms away, and your eyes swell so bad your retina tears, a nice cup of organic green tea and a liver cleanse with some marshmallow root and blah blah and "really special water from the slopes of some country that is more likely known in real life as the back sink of the company down the street" just doesn't offer much in the way of relief.

This is where the hydroxchloroquine may come in handy. I've been told it will be weeks before it kicks in and six months for it to take full and complete effect. He also prescribed Lyrica. I've been on Lyrica before. It really helped with nerve pain. I'm not sure if that's because it knocked me flat on my you-know-what and I just wasn't awake enough to care, or if it really helped, but I wasn't using a walker after being on that medication for a while. Then again, I don't sleep walk. I don't have Lyrica right now though, because when I went to pick it up, the pharmacy said that my insurance needs my doctor to write a letter saying why it is needed before they will approve it. Once I have that, it will take me up to three medications, as I'm already on topiramate.

I think I'll continue staring down this medication a little longer. Perhaps tomorrow would be a good day to start. The warning on the side says it may cause dizziness and I already catch falling walls quite often. It may also cause nausea, which is what is causing the majority of my concern. That might sound silly, considering the depth and severity of my symptoms, but I really hate nausea! Have you ever seen the episode of "Monk" where he has mere days to live and the doctor tells him he will feel fine, then there will be a period of time where he will have nausea, followed by death, and Monk looks up, horrified, and says "Nausea?" The doctor then says "followed by death," to which Monk repeats "NAUSEA?" That is an accurate representation of my feelings. I hate nausea. I have it often. I do not want more nausea. I admit that I've stood over a commode more than once thinking gruesome thoughts and screaming "THROW UP ALREADY!" at my body, because I couldn't handle being nauseous anymore. I think about slippery raw eggs running down my throat, how many people used that toilet, imagine, well, you get the idea.

Tomorrow. Tomorrow morning. No, I need to be more specific or I won't do this. Tomorrow morning at 10:00, I will take my first dose of hydroxychloroquine. It is 200 milligrams. I can do this. I will do this.

I am scared. I am tired. But I'm tired of being scared and I'm tired of being tired. I am so tired. So, so tired. If there is something, anything, that can be on my side in this fight, I need to take advantage of it.

I'll be updating as seems timely.

Thanks for listening.



















©2014 G. Locke

August 3, 2013

A New Hallelujah, Let's Sing Gloria!

As we gaze upon the wonder of the sun and stars
And all things under heaven that are near and far
We marvel at your power and we start to sing
A new hallelujah, let's sing Gloria!

When He came a newborn baby, as an infant King
Wise men brought Him presents as an offering
Let our gift be our music as we kneel to sing
A new hallelujah, let's sing Gloria!

As we wonder at the mystery upon the Tree
How your love encompassed everyone from sea to sea
Let us glory in your mercy as we stand and sing
A new hallelujah, let's sing Gloria!

When the final battle's over and we see your face
And you call us to the presence of amazing grace
We will rise to answer your call and forever sing
A new hallelujah, we'll sing Gloria!
              To our King
A new hallelujah, we'll sing Gloria!

© Gina Locke 2013

July 15, 2013

Dementia

Listening in the softness you can almost catch the sound
Of her gathering up the strength to deny she was falling
Falling from the grasp of memories that make one unique
That remind  people that "this is who you are and were"
This was your defining moment in childhood
When you got that scar you've always carried
And that first job you worked with pride
Though later you embellished the details
Stories to tell of joy, tears, of simply living
But now they're scampering to hidden parts of her mind
Like a terrifying child's game of hide and seek
So she throws a glass across the room and screams
Because at least for now she remembers this morning
The doctor saying it will only get worse despite her young age
Very early onset but happens, as if that's a comfort
But there's still so much to say to the children
Things to do, but she can't quite remember what
So for now she sweeps up the shards of glass
Carefully gathering them from the cold tile floor
And from the dustpan they fall into the trash
Shards of brokeness escaping and falling, falling, falling...

©2013 Gina Locke