Surprise!! It's Christmas!!

If you struggle with pain in your hands from reading, I highly recommend an e-reader.  Below I share how I ended up with my Kindle.  It's made a huge difference for me.

A few Christmases ago, I remember talking to my friend, Sarah, about how it had gone.  Only a day or two after the holiday, we talked about what we had gotten, and what we had given.  She asked if I had gotten everything I wanted.  I casually mentioned I would have loved an e-book reader, but knowing money was tight and I hadn't realized my desire for one until too close to the holiday, I hadn't gotten it.

It was one of those things I casually shrugged off.  I had figured I would just look into getting one myself.  I was going through one of my heavy reading phases and I realized how much pain it caused me to hold open a book, especially a hardcover book.  I love reading in bed, especially on bad nights, and it was so painful and bothersome that I would often just not bother.  I figured a Nook or Kindle would alleviate that problem, but I was just going to have to wait.

Or so I thought.  Sarah and I made plans to just have a quiet night of talking.  She would come over and we could just relax.  Sarah is a sneaky one.  I hadn't been to Bible Study for a bit, which is how we know each other, mostly because my pain had hit it's peak.  I was also going through a lot of personal issues at the time, so it became too much for me to handle.

When I opened the door, I greeted Sarah and her husband, Chris.  I hadn't expected him, but that was ok.  The more the merrier.  A few minutes later, there was another knock at the door.  I wasn't expecting anyone else, but apparently Sarah was.  A couple more people from Bible Study were there, and I began to see what was going on.  I was an unexpected hostess to a surprise party for me!

The nice thing is I really didn't have to do anything.  Everyone else brought food and drinks.  I was given a plate and told to sit (paper plates thankfully, so I had no dishes to do later either).  Sarah and I laughed about how sneaky she had been.  It was a great night and I was happy to share it with my closest friends.  We all gathered in the living room to talk and eat pizza.

As we were finishing up our pizza, I was presented with another surprise.  One by one, for the simple reason of "being a good hostess", I was handed a piece of cardboard by my guests. Pieces of a puzzle I started putting together.  I had a good idea what it was with the first piece or two.  The finished puzzle was a black and white image of a Kindle.

I was then informed that it had been ordered and would be shipped to my house in a few days.  Apparently the Bible Study had all chipped in to buy one for me.  I didn't know what to say.  No one but my family had ever spent more than $20 on a present for me, or had put the kind of thought into it that they had.  It meant so much to me that they would go to this trouble for me.

And the gift, the Kindle, has been a life saver.  Weighing less than most books, and even taking up less space than a paperback, the Kindle has allowed me to do more reading than I otherwise could have.  Since the popularity of the smartphones, I prefer my Bible app on there, but used to carry my bible to church with me on my Kindle.

I've now owned it for a few years.  Even with newer models coming out, I love my little black and white kindle.  No irritating screen backlight to prompt a migraine.  Fits perfectly in my purse and easy to keep within arms reach.  I've been expanding my library.  I'm always looking for free ebooks on Amazon or other places online.  I'm also working on replacing my physical books with ebooks.  Too many years of not reading my Harry Potter books has irritated me.  Over the last several weeks, I've re-read most of the Left Behind Series.  Still working on it.

To this day, I will not forget the love that was shown to me that night.  Real friends are hard to come by and they've shown many times since then just how much I am loved.  The Kindle has been another step in establishing normalcy with Fibro.  Where before I found the pain of reading actual books to be unbearable, I can now read without pain.  I can manage a vast library on my computer and sync it to my Kindle, making it much easier to find books I want to read.  More and more publishers are adding ebooks to their repertoire.  I highly recommend some kind of e-reader, Kindle, Nook or otherwise.  The older models without the blacklight seem better to me.  I can read on my smartphone if I like, but my kindle doesn't give me headaches if I read too long.

Baking Cookies

Finding something to occupy my time is a daily challenge.  There are things I have to do, things I've been meaning to do, things I want to do, and things I don't.  I enjoyed a combination of them today.

First thing this morning, I was supposed to babysit my nephew.  I had a rough night last night, staying up too late reading on my Kindle, though even that did not lull me to sleep.  I took a muscle relaxer, but oddly it seemed my muscle pain and spasms increased.  Eventually, some music to relax me and I fell asleep.  Not early enough, though as When 10:30 came around (and so did my sister-in-law and nephew) I was still out.

I woke up quickly, though, with his bright, smiling face!  That kid always makes my day!  But while I was watching him, I remembered the jar of cookie mix from the baby shower for him.  I'd been meaning for ages to make them.  I wanted to do it on a day when hubby would be home to enjoy them fresh from the oven, but it seemed that I was often in too much pain or too fatigued to do so.  Somehow revitalized by my visit with my nephew, I felt the urge to bake cookies.  Once his dad had picked him up, I proceeded to get everything together to start baking.

I learned a few things from this.  First is, don't let a mason jar of cookie ingredients sit for over a year.  I think I doubled my work having the sugar, brown sugar, and flour so compacted and hard to break up.  I did, of course, but just mixing the dry ingredients was enough to start the back pain.

Second, I need to get REAL mixing bowls!  I was recently blessed to receive a hand mixer (thank you, Doreen!) but it was far too messy using it in that little pyrex bowl I use for my biggest mixing projects.  It usually works well for mashed potatoes, but even being my biggest bowl, it was too small for these cookies.

Lastly, I think next time I'll be splitting up the job to save my back.  Once I get proper mixing bowls, I think I'll start by mixing the dry ingredients, rest a bit, add the wet while the oven preheats and throw them in.  I underestimated how much work such a simple thing would be.  Don't get me wrong, I enjoyed it, and the cookies are good!

I just have to plan better next time.

And get real mixing bowls.  Gentle Hugs!

Settling in

It probably seems silly, but a year and a half into marriage and I still feel like I'm settling in.  Oh yeah! You don't know that bit yet!

October 27, 2012, I married the most remarkable man I ever met.  If you're single, and disabled, you probably believe, like I did, you will never meet someone even willing to tackle the challenges that come with being in a relationship with someone in chronic pain.  I knew Fibro is incurable and that I would struggle with it my whole life.  I even believed that to date someone would be selfish.  I felt that it would essentially be asking someone else to take care of me and bear the burden of this illness.  How I could do that to someone I love, I couldn't imagine.

Until I met Will.  Oh, he was everything to me!  We'd been friends for years, online, but when we started dating, he constantly surprised me.  From the ways he showed he cared to the times he actually had to care for me, he never abandoned me.   Even during the time we "broke up" (a mere few months, but long enough for both of us to grasp what God wanted of us in our relationship), he was always there for me.  The day I married him was the happiest of my life.  Years of a long-distance relationship takes its toll, and finally I could say I would never have to go home and leave him again.  He is my home now.

Though we've been married for a year and a half, I still feel like I'm getting used to it.  Some mornings I wake up and forget my new life, imagining I'll wake up back in my old house alone. Adjusting to being a wife has been interesting, to say the least.  I cannot work a normal job, not even part time, so I care for the house the best I can.  Some days are worse than others, and hubby can attest to the fact that our house is no prize winner.  We have weeds, dirty dishes, and unswept floors, probably like most families.  The last two really grate on him, though so I try to make sure to at least do those.

Much has changed in my life.  I care for a house, babysit my nephew (he's almost walking so he'll be real trouble soon!), and I'm trying my best to manage an Ebay business.  Cleaning and cooking are troublesome so I'm always looking for ways to make them easier.  An ebay business I can run from bed (at least I can with as small as it is now).  Babysitting is tiring, but a blessing and not an every day occurrence.  It's the cooking and cleaning that really get to me.  I often have the desire to clean, but not the energy.  So I'm always looking for ways to make it easier on me.

I have bookmark after bookmark saved, and I plan to tackle each one.  Recipes I've saved, I plan to try out and see how they work.  Tips for easier cleaning will hopefully have my house looking better.  As I try them, I plan to use this to document.  My original purpose behind Fibrohacker was to document ways to make living with this hellish illness easier.  I've often said that the world won't adjust to make things easier on me, so I have to do it.  I'm not afraid to use handicapped parking, scooters, or bring my own chairs.  Not afraid to build a computer set up I can use at my recliner (sadly, while brilliant, has fallen into disuse due to a bulged disc in my back.  Even sitting in my recliner for too long is painful these days).

So, as I go through my recipes and tips, I'll keep a log here.  Some friends and I are working on a Fibro Cookbook too.  I've no doubt some of my experiences will end up in there as well.  I want to try out freezer cooking, preparing multiple meals in advance for simple cooking later, slow-cooker recipes, marinade recipes.......the list goes on and on.  Time will tell if I follow through as well as I would like.  I tend to have great ideas and take forever to implement them.  But, settling into my new life hasn't killed me yet. Blogging about it should be relatively easy!

My Mistakes in Filing for Disability

If you have fibro, or any chronic disease, there is every possibility you will file for disability.  I was forced to.  At the age of 25, I found myself unable to work.  I thought I could take a break, regain my health, and go back, but I couldn't.  So I filed.  It was the hardest decision of my life.  I had worked hard all my life, even as a child babysitting or working for my family business.  I was a hard worker in school.  So I wasn't prepared for the realities of losing all that.

Today was my hearing day for my disability case.  I have been through 2 denials, and sought the assistance of an attorney after the first.  After today, there is a slim chance I'll win, for reasons I'll get into here.  It is highly likely, however, that I will lose my case and the ramifications of that are not fun.

Social Security Process

First off, for those of you who have no idea what to expect, here's how the process goes.  You apply, either online or in a Social Security office.  They base your disability on several factors: 

• Do you have a medical issue?
• Is it expected to last more than 12 months?
• Will it result in death?
• • and if it does not, then Are you capable of working ANY job, even the most sedentary job you can imagine?

You will then be ordered to see a SS doctor their medical opinion.  Frankly, don't let it bother you too much.  They see you for all of 5 to 10 minutes and shove you out the door.  If you don't get a favorable opinion, it's not the end of the world.

You will be approved or denied based on the evidence you submitted and the doctors' opinions.  Most people are denied.  You can appeal it, and either be approved or denied again.  If you are denied a second time, you can request a hearing.

My recommendation is to get a lawyer at the beginning.  They only get paid if you win, they help you with the paperwork, and they get a maximum of $6000 out of your back pay, which you never even see.  It's held by the Social Security office and they pay your lawyer.

Overall, the process is simple, if lengthy.  But I made some key mistakes that may cost me my benefits.  I want others to be aware ahead of time so you can stand a better chance.

Document! Document! Document!

First of all, document everything!  I heard it multiple times, and I assumed that when I went to the doctor, what I said was being documented.  It turned out, my primary rheumatologist never kept the records indicating my symptoms.  I was asked to rate my pain, I stated the symptoms I was dealing with, but never verified they were in my records.  Turns they were not.  So I walked into my hearing with no medical evidence of the severity of my symptoms.  So, make sure your  doctors are documenting EVERYTHING.

Complain

I know, complaining sounds bad, but in your disability case, it may make the difference.  What this does is make sure that it goes into your record how your symptoms are progressing.  Using this information, the judge can determine the severity of your symptoms, which you will need to prove to win your case.

Never give up!

If you are like me and have difficulty getting health insurance, don't give up.  Seek out free clinics, cheap doctors, anything to establish that you are trying to continue your treatment.  And even if they cannot do anything for your fibro but refill your existing meds, continue to mention your fibro, your symptoms, and how they affect you.  I was able to find a free clinic, but I didn't bother with anything but general health and getting my pain meds refilled because I knew they could not do any more than that.  I didn't see the need to complain, and that was a big mistake on my part because they were the ones that ACTUALLY kept records.  The fact you are attempting to continue treatment in some way will prove beneficial, otherwise the judge will wonder why, if your pain is so bad, why weren't you seeking treatment.

Timing is important!

If you are filing for SSDI (which you pay into as you work) you have a final day that you can win your case.  They call this the "Date Last Insured".  This is your deadline to win your case.  If you do not win your case by that date, you can only apply for SSI (which is based on household income).

Ramifications of losing and the option to withdraw

The last thing you should be aware of is that if the judge at your hearing denies your appeal, this is your last chance.  You lose your case, period.  All evidence provided can no longer be used.  You may refile, but you can only date it back to the day following your hearing date.  You do have the option to withdraw if your case is weak.  What this does is it preserves everything you've submitted and you can reopen your case and if you win after reopening, you will get back pay to your original onset date.  You still have to win by your "Date Last Insured".

One more thing to note, which was the deciding factor for me, is that should you withdraw, you must reopen your case within 1 year of your last denial.  For me that date had already past.  You can, however, have an attorney get involved and they can file the appropriate motions to reopen the case.  Basically, after the year, you'll NEED an attorney.

The hearing itself

Despite the risks, I decided to go forward with the hearing.  With all the factors involved, I felt I had little to lose by trying, even though the odds were against me.  In the hearing itself, there are very few people: the judge, stenographer, you, your lawyer (if you have one) and possibly a vocational assessor.  The vocational assessor will help the judge figure out if there is any job they believe you are capable of.  Aside from swearing the oath, mine said nothing while I was there.  I believe after I left, she spoke with the judge.

After the preliminaries (date, case number, my name and information, etc, etc), my lawyer proceeded to ask me a series of questions.  Some of the most important were how long I could sit, stand, and walk.  What was my average day like?  Why did I feel I was incapable of working?  After all the questions, my lawyer asked me if there was anything I wanted to address or say to the judge.

My response was this:  I worked hard all my life, even as a child.  I would babysit, or go work at the family business doing filing or answering phones.  I kept up a good work ethic and the day I realized I couldn't work was the hardest thing.  Deciding to go on disability was the most difficult decision of my life and one I did not take lightly.  I said if I could work, I would love to, but the combination of the pain making me unable to sit for more than 2 hours, the cognitive issues that had me asking how to do a job I knew how to do, the insomnia keeping me at my worst, the migraines hitting out of nowhere, and the other symptoms that interfered with my day made it impossible for me to be a reliable employee.

Once all that was done, my judge basically looked at my lawyer, and said, "I believe the testimony, but the medical evidence is not supportive of this."  I was permitted to address the judge and mentioned that I was upset and disappointed that, although I had indicated my issues with fibromyalgia and my doctor had even approved temporary state disability for me, that none of that was in my medical records.  I explained that I had been addressing my complaints to the only rheumatologist I had seen regularly.  I also explained that I was uninsured for much of the time and was unable to provide this information to anyone, but that I was currently seeking a care team to continue my treatment.

My lawyer mentioned they were still playing phone tag for some records and the judge agreed to withhold his decision until my lawyer could provide those.

If I had any advice to offer, it would be to stress the things that are difficult for you that should not be.  For example, in explaining my average day, I stressed that I woke up every morning, stiff and in pain.  Took meds, ate breakfast and rested for a little bit.  Said that I would do chores, like dishes or laundry for a few minutes, then lie down for anywhere from an hour to 3 hours.  I told the judge that at night, when I cuddled with my husband, and laid my head on his chest, I could only do so for a few minutes before my neck hurt so bad I couldn't bear it any longer.  I even, embarrassingly, mentioned, that I often went 2 weeks to a month without shaving because I couldn't physically handle it.

Also, be yourself.  Don't feel like you have to hide anything or make things seem better or worse than they are (lying under oath is a crime, after all).  But make sure you accurately explain everything to the best of your ability.  Be as genuine as possible.  And don't let the stress get to you.  You may just need to take a second, compose, and straighten out your thoughts.  If the fog gets in the way, don't be afraid to say so!  In fact, they asked me about my hobbies and I literally said, "I know I have more, but I can't remember them."

Fibro cases are notoriously difficult and lengthy.  They can be won, and hopefully my mistakes will help make it easier when you file for yours.

My Bag of Bricks

When I was seeking answers, what seems like a lifetime ago, a doctor who could give me no answers left me with this remark: "Fill a bag with 30 pounds of bricks and carry it around all day.  That's what you're doing to your body by being overweight."  Needless to say, this was not helpful.  I tried losing weight but it never stayed off and it never solved my pain.

If I could see that doctor today, I'd want to tell him, "I found my bag of bricks."  See, eventually, compassionate, knowledgeable doctors diagnosed me with Fibromyalgia, a condition that causes widespread pain, fatigue, bowel problems, depression, sensitivity to stimuli, cognitive problems, and a host of other complications.  I've heard Fibromyalgia be called many things, but to me, Fibromyalgia is the bag of bricks I carry every day.

When I go out with friends, I have to carry these bricks with me.  The effort exhausts me, leaving me feeling drained at the end of the day.  Even when I stay home, doing chores or even taking a shower, I still carry my bag.  The weight slows me down and prevents me from accomplishing all I want to.  Some days, it's as if someone added more bricks to my bag.  Some days, it seems as though, miraculously, my bricks were feathers.

No one can see the bag of bricks I carry.  I have to explain it to everyone who wonders why I suffer when I don't look like I should.  Like parents hearing of their child's invisible friend, many brush it off with chagrin, as if I am making it up.  Some pity me, unable to do anything to help me.  Others, like my husband, family, and close friends, do all they can to carry some of the weight for me.  These angels make my life with my bag of bricks more bearable.

My faith is the only other thing that gets me through day to day.  Although I may have to carry these bricks, and I wonder why God gave them to me, I know that while I carry this weight, He is carrying me.  On the days when my bricks keep me from doing what I want or need to do, His grace provides.  When I believed that my bag of bricks would prevent anyone from ever wanting to get close to me, He put my wonderful husband in my path.  The blessings I have experienced, while they do not negate the burden I bear, have made it easier to carry.

I am thankful, though, for my bag of bricks.  Carrying it has opened my eyes to the people around me.  You carry a bag of bricks too.  Everyone does.  It may not be Fibromyalgia.  It may not even be a health issue.  It might simply be troubles at home, the baggage of the past, or feelings you can't seem to get past.  We all have to learn to treat others with kindness because our burdens are not always visible.

And one day, I'll fly away from this world and lay down my bag of bricks one last time, and walk and run freely straight into the loving arms of Jesus.  I'll ask Him, "Why did you give me that bag of bricks?" and He'll answer, "My child, did not your trials make you stronger?  Did you not trust me more because of your struggles?  Did you not receive manifold blessings because of it?"

And though my life with my bag of bricks will be but a memory, I'll forever be thankful that He cared enough for my character to challenge me.

Rekindling

Despite what the title might indicate, this has nothing to do with my kindle.  However, that post will be coming soon!  Sarah, you can look forward to my glowing post about that!  No, I'm writing today about rekindling my interest in web design.

Five years ago, I enjoyed a job as a web designer for a local company.  When I left that job and went to work for my dad, my interest took a back seat to learning how to design houses and engineer buildings.  It was a fun experience while it lasted, but I never really had the interest in it that I had in web design.

Well, now I'm unemployed and I have a lot of spare time on my hands and the itch to do something constructive with it has struck again.  I tried to appease that itch before with crafts.  It was enjoyable, but it has it's limitations.  It's hard to cross-stitch when my wrist acts up, for example.  I can see web design having similar issues.  If a particular day the fibro fog is thick, I may not be in the best shape for programming.  But I think a combination of the two should keep me occupied.

But since it's been a few years since I last designed a website, I feel a bit rusty.  After all, HTML5 has taken off, and there's lots of new features to play with.  CSS3 (something I looked forward to years ago) now seems to be standard.  I'm looking forward to learning all the new tricks.  And designing for smartphones is even more important these days, and I'm up for the challenge.

I'm enjoying it.  Whether this just stays a hobby or turns into a source of income, I'm going to enjoy learning and having something to do.

Strength

Last November, I finally decided I couldn't work anymore. That was the most difficult decision I had to make about my illness. To me, not working was a sign of failure and weakness. It took a lot of people a lot of time to tell me otherwise and convince me to file for disability. Though I moved forward with it, I felt as if the strength I gained from working was lost.

I often had to work harder and be stronger to do things others could do with ease. Working was one of those things. I can remember days, a multitude of them, where I had to push myself to get through a work day. Sometimes I failed; I would have to go home early or stay home altogether, but I never beat myself up over it because I knew I had done my best. For the most part, though, I had built a successful working life, despite my struggles.

I could remind myself of my strengths because I knew that my struggles only made me stronger. Oh, how easy it would have been to just give in, but that's not who I am. In high school, when my knee kept me from being with the other cheerleaders, I cheered from the sidelines. When I fell behind my classmates at Magic Mountain or Disneyland, I pushed and struggled alone to catch up. Any time everything in me wanted to just give up, I never did. I was strong, stronger than anyone knew, because it took me twice the effort to do what everyone else could.

When I lost my ability to work, at least work enough to pay bills, I felt I no longer had that strength. I felt I lost my worth. How could I contribute anything to anyone if this part of everyone's life was something I could not do anymore? I know of people with exactly what I have, or more, who were able to work, and here I am, so young, and yet, incapable, inferior.

I cried so many tears in the fight to accept my limits. Friends and family can attest to the fact I did not want to quit. To this day, that pain lingers. But it allowed me something I never knew I needed. Losing the ability to work forced me to find my worth in something else: a God who formed me in my mother's womb, set each day ahead of me, and knew my every struggle, triumph, failure, and desire. This God reminded me time and time again that His strength is made perfect in MY weakness (2 Corinthians 12:9). He told me that I can do all things through HIM who gives me strength (Philippians 4:13).

It took losing my own strength to see that it is God who is my strength. My strength isn't dependent on how much I can work, or how hard I push myself, but on how much I rely on God. As I begin to see God's plan for my life in the things and people He is placing in my path, I realize that I needed to lose my vision of myself in order to depend on God and let Him mold me into the woman I am becoming.

I'm not even close to perfect about relying on God or letting Him judge my value and worth. But bit by bit, He is stripping away that which made me believe I could do it alone, that I didn't need help. Though it is painful, and I see but a scarred remnant of what I once was, I know God sees me becoming more beautiful and radiant as my life reflects His touch. I need to learn to see myself as God sees me, but He's working on that too. =)

Mercies in Disguise

I've been going through a lot lately.  Emotionally, physically, and spiritually.  I'm stunningly aware of my vulnerability as I go through the emotions of a child with divorcing parents. I daily feel the ache and longing for love after a breakup. And some days that's enough to want to stay in bed, even if I didn't have to deal with my Fibro.

It's times like this I fully realize that I can't do it.  I am weak.  I am frail.  And there is no reason for me to think anything good could come from my future.  Except for one thing.  I know in all of this, God is holding my hand, guiding me, and even when it feels like I'm walking alone, like the Footprints in the Sand poem, those are the times He carries me.

One of the biggest ways God speaks to me is through music.  I had the most beautiful experience the other night.  I had spent most of the day crying.  I was in pain, everywhere, but mostly in my heart.  I found myself questioning God.  I cried out to Him, "What more do you want from me?!  I can't take anymore!"

That night, sobbing and with nothing left to do but pray and sleep, I turned on the radio like I do every night.  For 2 hours straight, song after song played that said exactly what I needed to hear.  It was like God programmed the radio just for me.  I felt Him say, "I'm sorry you are hurting.  But I am with you.  I won't leave you.  All your worries, all your fears, cast them on me.  You are my child and I will take care of you."

I cried, but not in anguish as I had that day.  My tears were tears of healing.  My God is my Comforter.  And that night, though there are 6 billion people in the world, I felt His undivided attention and love.

One song that I have been hearing everywhere lately is called "Blessings" by Laura Story.  It has been played everywhere, and I bought it and keep it on my phone just so I can listen to it when I need to.  I watched a video on YouTube where she explained the backstory of this song.  I love hearing the story behind songs and I could relate to this one.  The link is above, but to summarize, a year and a half into her marriage, her husband developed a brain tumor.  In faith, she and her husband pray for healing, but it doesn't come.  She has struggled with how to reconcile a God who allows such things to happen, but she says God is teaching her that sometimes He has to leave us broken so he can work through us in greater ways.

The story is similar to mine with fibromyalgia and so I can relate to it.  Perhaps that is why her song touches me so much.  I'll link the lyrics here.  In her song she asks, "What if your healing comes through tears? What if a thousand sleepless nights are what it takes to know you're near?"  I've been learning lately that it is not through the easy times in life that we learn or are perfected, but it is through our trials. In our suffering, God slowly, and yes, painfully, chips a little away here, smooths there.  All to make us more beautiful.  More like Him.

Philippians 1:6 For I am confident of this very thing, that He who began a good work in you will perfect it until the day of Christ Jesus. (NASB)

But we also have to remember that while God is making us more like Him, he does not do it remotely.  He is THERE with you.  He will comfort and guide you and He will never put on you more than you can bear.

2 Corinthians 1:2 For just as the sufferings of Christ are ours in abundance, so also our comfort is abundant through Christ. 

Psalm 34:10 The young lions do lack and suffer hunger;
But they who seek the Lord shall not be in want of any good thing. 

This isn't even the best part.  These things are good and we need to hear them.  We need to know that God doesn't abandon us when life becomes too difficult.  The best part, however, comes at the end of the song: 

When friends betray us, when darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home
It's not our home

What if my greatest disappointments
Or the achings of this life
Is the revealing of a greater thirst
This world can’t satisfy?

Deep down, inside every person, is the longing - no, the desperation -  for more than this world can offer.  We are all homesick.  The human heart was made with a longing for heaven and nothing in this world can come close to what we need.

Romans 8:18 For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us.

How much greater will our homecoming be after the trials here on Earth?  I think we probably couldn't appreciate the greatness of heaven without enduring here in this world.  How much more will we enjoy the eternal, never-ending presence of God in our midst, day after day, having had the anticipation in this life?  What if all our trials, all our suffering, every person who hurts us, the guilt and fear and anger we feel, are indeed mercies in disguise, allowing God to prove to us that our faith is not empty?  What if this is just another way God make's himself known to us?

Like Laura Story sings, "What if the trials of this life are Your mercies in disguise?"

As always, I would appreciate any comments about my posts.  Thoughts, encouragement, and criticism are welcome.  I am constantly developing as a writer and as a child of God and I would love to hear from you.

A Little At A Time

Today's going to be one of those days.  I knew that yesterday.  And Why?  Because I didn't follow my #1 rule.  "A Little At A Time".

The one thing having fibromyalgia has taught me is that pacing yourself is paramount.  For about a year now, I've kept to the "One Major" rule.  One major task a day.  Work or shopping; never both.  Any more than one, and I risk a flare.  No, "risk" is the wrong word.  That indicates there's only a chance.  "Ensure".  I ensure a flare.

So, here's the ultimate question: what made me think I could do 3 shopping trips yesterday?  In my defense, the third was unintended.  Though, if I am to be honest with myself, I was not even up to shopping at all.  I had eyed the stairs between me and my clothes with dread.  My legs burned and my shoulders were in agony by the time I got up the stairs.  Somehow, I got up the gumption to get dressed and wait downstairs for my Mom to pick me up.

But I forgot my socks so back upstairs I went.

Fortunately there was about an hour still of waiting for Mom, so I got a little rest.  I had 2 goals: grocery shopping and a run to the craft store.  Mom wanted to stop at another store to pick up some stuff for the house, and I had to admit, I wanted to go as well anyway. I got some much needed stuff for my bedroom, so it wasn't for naught.

Next stop was Michael's. This is always a doozy for me.  Every time I plan to go, I think it will be a quick run to pick up a few things.  But I can't help but look at everything when I go.  It's like a candy store.  So many bits and baubles and inspiration around every turn.  It's glorious!

Somehow, I managed to not get the very thing I went there to buy.  I don't understand how a craft store can completely run out of black embroidery floss, but they did.  Oh well, I'll buy it later.

Now for the groceries.  As we pulled in, and I reminded Mom of my handicapped placard (lifesaver!), I thought, "OK, I've walked through all the other stores, so  I can just take the scooter this time.  It's probably best."   Isn't it just my luck, there were none.

OK, I'll be dead on my feet by the end of the day, but I'll muddle through.  A third of the way through the store and I'm ready to quit.  But I really need to get some things, so I press on.  What do I find when I finally check out?  If you guessed "scooter" you were right.  Figures, right?

By this time, I'm wiped out.  Thank God for little brothers.  Andrew and Evan were a huge help getting my groceries put away.  I spent the rest of the night doing nothing. Ok, that's not true, I did get the non-perishables put away.  Even after all I'd put myself through that day, I still had the urge to DO something.  I resisted the urge to clean my room up a bit when I went to bed.

Exhausted as my day made me, I woke up early this morning.  I always know it's going to be bad when I wake up early.  It doesn't change how tired I am, I'm just awake.  So, I'm expecting the next couple of days to be rough.  I really hope I can make it to church on Sunday.

The moral of this story: It doesn't matter how much everyone else can manage in a day, never do more than you are capable of doing.  A Little at a Time.  Doing otherwise turns you into me: taking naps at 10 in the morning.  Speaking of which, I'm heading upstairs.  I need more sleep if I'm going to be up to my One Task tonight.

Hoping you all take everything A Little at a Time.  (I eagerly look forward to questions or comments about my writing.  Constructive criticism is also welcome.  Thank you to all of you who read these and learn something from them.)

The Armor of God

I am so proud of my little brother.  He's such an awesome writer and so brilliant.  So when he wrote this piece, I just wanted to share it with the world!  I've never seen such meaning from so simple a scripture, but Evan really brings Paul's perspective to us today.  I highly encourage you to read this.  Any comments you have, I will be happy to deliver.

God bless you as you read this and apply it to your life.
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The Armor of God
By Evan Miller

You know, as I was reading Ephesians a few nights ago, I was struck with a sudden thought. Reading through the description of the armor of God, I've come to realize, Paul did not choose these representations at random, but rather, each piece hold a unique, deep meaning, and how it may be applied to our lives. Take a look.

The Helmet:

The Helmet of Salvation is what it is called in the Bible. Now, in the times of the roman military, a roman legionnaire would wear a helmet, not so much for protective purposes. Rather, they had plumes and supposedly decorative markings on the top. Why? To identify them. In battle, the archers often stood on the high ground, looking down on the battlefield, on the top of the soldiers heads. To ensure that they were firing into the enemy ranks, and not into their own, they looked for these plumes on the helmets to tell their soldiers apart from the enemy. The helmet of salvation is what identifies us as part of the Lord's army. It is the piece which says, 'This one belongs to God'.

The Breastplate:

The Bible refers to the righteousness a Christian is granted as a breastplate. There are two very interesting points to be seen in this. When we think of a breastplate, we think a piece of armor that protects the torso. The modern equivalent is a kevlar vest. The disconnect in that thinking, is that bulletproof vests protect both the chest as well as the back. However, at the time Paul penned this, the Roman breastplate was a piece of armor that protected only the front, the side that was supposed to be towards the enemy. The back was often unarmored. Some have theorized that Romans thought a soldier running from an enemy deserved to be killed and left their backs unarmored. Others because, well, armor is expensive, and by only armoring one side it became cheaper. Either way, the principle was the same. The breastplate only works facing your enemy. Turning away or running leaves you vulnerable.

And yet, there's another principle here. The breastplate was the piece of armor, that played the part when all else failed. When his sword couldn't deflect the swing, when the soldier's shield fell, the breastplate protected him. In other words, the breastplate only actually does its work....in failure. This rings true of us as well Together with salvation, when your grasp on your sword falters, and your faith, your shield, seems to break, God's breastplate screams "RIGHTEOUS! You are righteous! You have been made anew! Though you may not know your sword, even when your arm is too weak to raise your shield, I will still stand, for He still stands!" And the darts of your enemy which exploited your failures bounce off your breastplate. God gave it to you. It doesn't break. Your other two defenses have to be used, but this one doesn't. Your sword must be swung, your shield must be raised, but your righteousness simply is. God gave it to you, you wear it, there is nothing done on your part for it to be. When you fail, it doesn't.

The Belt:

The belt, or in some translations, the girdle, is the Belt of Truth. And it is given by God for two invaluable reasons. The first is because having your pants fall down in the middle of a battle is just plain embarrassing.

All joking aside, the interesting thing to note, is that in those days, a roman soldier carried his sword in a scabbard on his hip, strapped to his belt. The belt, truth, carries the Sword of the Spirit. Truth and the Word are not separate. One does not have to delve into delusion and willfully blind himself to reality to believe in Jesus. Creation screams the evidence of a Creator. Our souls yearn for the Father. Every facet of life is made in order and holds a foundation of fact. If the fact is that God is true, then the facts of creation will, and do, reflect that. There does not need to be any apologizing or excusing for the Bible. It is true, the world around us represents this truth. The Bible is fact. It is supported by it, and it rests in it. As the sword is held in the belt, so is the Word of God to be found in truth.

The Shoes:

Shod your feet with the Gospel of Peace. Though we often refer to them as the 'Shoes of Peace', to be historically accurate, Roman soldiers actually wore rugged sandals that tied around the ankles and up the calf. But 'The Sandals of Peace' reminds me of flip-flops for some reason and that mental image is just plain ridiculous, so we're gonna call them the shoes here. In all the portrayals of soldiers, no matter the nation, no matter how fanciful, ridiculous, and blown out of proportion the portrayal may be, no one ever imagines them barefoot. Why? Because, aside from the fact that it would look absolutely ridiculous, it was also highly impractical. These are soldiers, not interior decorators. Battles aren't held on plush carpets, trimmed lawns, or paved city streets....or rather, if it was on the streets, they were usually dirty, strewn with litter and debris. Also, it usually meant you were losing. Battlefields were rough, wild, untamed fields in the middle of nowhere. Armies fought in the hills, on the fields, in swamps and desert and frost-covered fields.  The shoes were given that, in the rough terrain of the battlefield, a soldier may not be comfortable, but they could bear the rigors of maneuvering in the harsh locales without shredding their feet to the point of being no longer able to stand. So too is the Gospel in this world, a covering for us that we can live and walk and stand in a world overrun with evil and strife and wickedness. Because of the Gospel of Jesus Christ, we can have peace and hope in a world that would otherwise make that impossible. Because of it, we can stand.

Also, it's really useful when you need to give the enemy a good swift kick to the rear end.

The Shield:

The Shield of Faith is not our first line of defense, but it is our most stout. Your sword might not ward off that blow, but this will. Roman armies carried a heavy full shield that was known as a scutum. These shields were might bastions of defense, warding off any blow. Like a shield, our faith can be raised even when our sword seems a little clumsy. In faith we can say, "I do not know the answer now, but I do know the Lord." In faith we raise an impenetrable defense that can sometimes seem a little frightening at times. When one raises a shield, they often can see little but that. A shield blocks the defender's vision so that they cannot see their Commander or their battlefield. They can only see that life-saving wall, and feel the strength of the enemy hammering on it. But they still come out alive.

However, how much greater that shield when joined with others! Roman legionnaires carried this scutum which was tall enough to cover the whole body, and what they did was the shields were crafted to interlock with others. Why? Because when a soldier on the front line joined his shield with the shields of his fellows, it would lock together to create a wall of steel. The soldiers in the other ranks would raise their shields over their head, protecting every member of the formation in one single, mighty shell which no arrow could penetrate. When the enemy fires their darts, raise your shield. Though it may seem scary, though you might not be able to see just now, it will keep you safe. When the arrows are too many, join your shield with your fellows, and let the body of Christ and the fellowship of his church protect you. Your battle wasn't meant to be fought alone.

The Sword:

The Sword of the Spirit. The Word of God. A soldier entering into battle without his armor won't last long, but a soldier without a sword isn't in the fight at all! We often imagine it as a mighty, gigantic blade lesser men could not hope to handle! Carving great swaths through enemies and breaking formations before it! This is exactly what the Sword isn't. The Roman military actually used short swords about two and a half feet long. This weapon was called a gladius. Not exactly the mighty image that would be seen in, say, a five foot claymore. Yet, with this weapon, the Roman military was enormously successful. Why? For several reasons. Though not outwardly powerful compared to the mighty weapons of their barbarian enemies, the short sword was agile and very easy to handle. Wielding it was not tireing, and it could dance easily around a larger blade, break apart a formation, and decimate armies. Not with huge cleaves that wiped out dozens with one swing, but with quick, sharp, precise strikes, joined with the efforts of the soldiers at his side, a Roman soldier toppled the mightiest of fortresses with seemingly the weakest of blades.

Lethal and quick, a sword does not only slay your enemy, but wards off their attack. When you defend yourself with the sword you are in a position to strike back, and the demons and lies will melt before you. Remember also, this weapon was not meant to be used alone. A single, small blade only does so much. Joined with Christ's armies, however, Satan's strongholds stand no chance. Your greatest weapon, your first defense. The Spirit of God.

So put on the full armor of God, not just in word or thought, but it is the defense in your whole life. A soldier needs to know his equipment. It was given to you by a Commander with more sense than you. Do you trust Him? Then you can trust the armor He gave you. Do you know Him? Know what He gave you as well.

I pray God blesses all who read this. Always remember that He's with you, and He didn't save you to let you die out here.

I Stopped Praying for Healing

From a young age, my prayers have often been sprinkled with requests for healing.  When the pain gets really bad, that's when I pray for it the most.  As a teenager, going to a Christian school, when the teacher asked for prayer requests, I would always request healing for my knees (where it all began).

As time went on, the prayers for healing continued, yet no healing came.  I knew God was either saying "no" or "it's not time yet".  I think I always thought that with enough prayer, God would give me what I want.

But I'm done praying for healing.  It's not that I don't want to be healed, nor do I think God will never heal me.  But I've come to a powerful realization in the last few weeks.  In all my prayers, I asked for my will to be done, but never gave a thought about His.

So, I've resolved myself to a new prayer.  I'm praying that God will show me how I can use this situation for His glory.  I may never be rid of this pain, this trial, but just as Paul was given a thorn in his flesh, I believe I too have been given this for a reason.  I know as long as I have faith and allow God to use me in whatever way he can, I will be blessed despite my suffering.

I have always known  little things that got me through the worst of this.  God will never give me more than I can handle.  In God all things are possible. In my weakness, his strength is made perfect.  But I think I always applied those in hopes that I would be healed one day.  It wasn't until I started praying this new prayer that I found a new peace.  Perhaps by finally putting God's desires ahead of my own in this area, I opened a door for God to shower new blessings on me.

And healed or not, God has a plan for me.  Perhaps, gentle reader, you too have something you've been struggling with that you want more than anything for God to just take it away.  I hope this encourages you.  I truly believe there is a drastic change in us when we acknowledge God's will and desire it above our own.  Who knows how lives will be touched when we stop letting our desires get in the way of God using us for His purpose?

Top Ten Creature Comforts

I was inspired to write after reading this article.  There are just some days that there is little that will ease my pain.  But there are a few things that make it a little easier to deal with.

Everquest 2 - I'm a gamer.  Always have been, always will be.  The thing that kept me hooked on this game longer than any other is the community.  I have so many friends in the game and there is always something to do.  And despite the monthly subscription fee, it's cheaper by far than many other forms of entertainment.

Kindle - I love my gadgets.  This is one that makes my life so much easier.  Lighter and less bulky than even a single paperback book, I can keep a full library in the palm of my hand.  On top of that, I have my Bible everywhere I go, so no more "Crap, I'm at church and forgot to bring my Bible!".  That alone makes it so worth it!  The best part of this, with a little planning, I have my cross-stitch patterns on the go!  Which brings me to...

Needlepoint - Whether I'm cross-stitching or creating a cute keychain out of plastic canvas, I find comfort in doing something constructive.  On days when the pain is in my hands or wrists, I shy away from this activity, but any other time, having a convenient, portable project to work on makes my day.

Electric Blanket - My savior!!!  Grandma got this for me a couple Christmases ago when the winter chill had me in significant pain.  I could not imagine not having this anymore.  The almost instant warmth I find under it is too exquisite for words!


My Little Brothers - Don't get me wrong, sometimes they are just plain chaotic, but there is little more satisfying than a gentle hug from the baby or playing games with the kids.  They are truly blessings.

Diet Cherry Limeade - Ok, no big surprise I'm a heavy drinker, but Sonic loves it!  There's something soothing about that drink, and the nice thing is it's caffeine free, because it's made with diet sprite, so my doctor won't throw fits over it and it won't disturb my already disturbed sleep.

My Recliner - This has been my lifeline since before (thank God!) I was diagnosed with Fibromyalgia.  I bought the most comfortable chair I could.  It's so soft and poofy (yes, poofy).  And since I've fixed it up with my computer so I can play in my recliner, I'm in heaven here.  This is kinda a combo of a few Comforts: EQ2, my Electric Blanket, My Recliner, and more often than not, a Diet Cherry Limeade.

DVR - Just got this today.  It's one of the little luxuries I've missed having the last few years.  My favorite series on DVD made up for it to a degree, but finally having the ability to watch whatever I want whenever I want is great, especially for those insomnia-ridden nights when nothing is on.  Or the following mornings when I finally fell asleep an hour before a feature movie I wanted to watch.

Hot Tub - So, sadly, I don't actually own one, but the gym I go to has one.  Whether I have the energy to attempt some fibro-friendly exercises in there or I just need to soak, it's a little luxury I enjoy whenever I can get there.


The Best Friends a Spoonie Could Have - Despite a world full of people who just don't get it, there are a few wonderful people in my life who do.  I love the people who make my life that much better just by being in it.  Real friends, who can put up with all the inconveniences and let downs that I wish I could spare them from, but are always there for me.  God truly has blessed me with wonderful friends and family.  Without them, I seriously doubt how well I'd be able to live with this condition.

It's 10:00PM...Do you know where my brain is?

If you do, please catch it and give it to me in a box.  If you tell me where it is, I'll either forget or wonder why the funny-looking jello tastes strange.

So, the last 2 days have been, well......educational.  I've learned that when sleep-deprived, you won't realize Excedrin relieves a migrane.  I've also learned that when sleep-deprived, the very thought of leaving the house will give you one.  Oh, and don't ever think you can actually do programming between sleep attempts.  What on earth was I thinking???

Short answer....What's thinking?  The last week has been an interesting one.  I've come to the brink of insanity and come back.  I've decided psychological warfare is possibly the most sadistic thing anyone ever thought of.  Oh!  And I will never ever ever ever ever use blogging or writing software without a spell-checker (between Blogger and Firefox, I'm covered!)

You learn a whole new definition of your limits when you suffer from insomnia.  When you suffer from dizzy spells and migraines at the same time limits stop existing. Frankly, I'm surprised I have the cognitive capability to write this (mind you, still using spell check on words like "using".  Why it suggested "Husein" is still a mystery.)  What was I talking about again?

Oh yeah!  Insomnia.  It sucks.  Don't ever get it.  As it stands I've tried 2 over-the-counter medications (different ingredients, of course) 3 prescriptions (one of which was prescribed yesterday) and I still have nothing to put me to sleep.  So I'm waiting on a call from the after-hours advice nurse.  I'm really hoping she tells me to go to urgent care and get drugged up......

See, thinking back now, the shot of Toridol I got at the doctor's office was probably what gave me my best bit of sleep in weeks.  I think they'll object to me going in for a shot in the rear nightly so I can sleep, but at this point I won't object.

All I want for Christmas is sleep.  I wonder if Santa administers drugs???

Fatigue: Suckage of the Soul

Yeah, that's as close to a decent title as I can get in this state.  Suckage is hereby an actual word.

I have been so exhausted the last couple days.  I expected immense fatigue after picking Grandma up at the airport.  Day trips are usually quite painful and exhausting, despite the enjoyment of it.  Oddly enough, though, the next couple days were uneventful.  I can't say I was exhausted as much as maybe lethargic.  Just didn't feel up to doing anything, really.

Now the weekend was a total switch.  I've been up probably a total of 10 hours this weekend.  Now I'm fixing to go back to bed.  My sleep schedule is whacked, but I have this need to sleep this off.  How many more 18+ hour sleep nights I'll need before I feel better, who knows?  This is why I can't work for anyone but Dad right now.

It sucks to be undependable.  But for now this is what I have to deal with.  Right now, I just need to take care of myself.  So, yeah, if you can't get ahold of me, I'm probably asleep.  Fear not.  I'll see the missed message when I wake up.  Whether you're awake when I see it, I can't know.

For now, I'm just REALLY glad I got a new mattress.  I'm spending more time with it than anything right now.

Off to spend more time with it. Laters!

Messages in a Bottle

This post is going to be a bit more personal than most.  But I'm hoping someone can benefit from my experience.

I have struggled with depression since I was 13.  A series of knee surgeries and the loss of a friend left me alone and unable to keep up with people my age. As time went on, new friends came and went, but lingering, unsolved pain and depression remained.  I always felt like I stood out from my peers.  I felt so different and felt people judged me for having pains they couldn't see. But I always thought after high school, things would be better.  The truth is, however, that there's not much from that time that I can remember as positive.  Up until the time I was 20, most of my life had been one crapstorm after another.

I tried to find enjoyment, and picked up a card game I really enjoyed.  My brothers also liked it, so at one point, I would take them with me every Friday to a local book store for a tournament.  And then, one day, I ran into Brian, an old friend of mine from high school.  He worked security there, and was on his rounds with his partner and friend, Chris.

I had no idea how that would change my life.  Brian told me how he attended a bible study with Chris every week and invited me to come.  Now that blew my mind.  The Brian I knew had struggled to find his way, and to hear him now inviting me to a bible study, well, I had to see what it was that would have him inviting people to it.

I'd always been a Christian, and I'd attended bible studies in the past.  I never stayed with one as long as this though.  I met the most wonderful people there.  These people grew to become my best friends.  We laughed, cried, and prayed together.

As I grew more comfortable with my new friends, I started leading worship.  I had always loved to sing, and they allowed me to use that for God's glory.  I found peace every week in this.

The year I turned 21 had been especially hard.  I sunk deeper into the depression I thought I had gotten over.  That was the year my bible study planned to go Christmas caroling.  When I declined to go, my friends knew there was a problem and confronted me.

Now, Chris and his wife, Sarah, have this way of really getting to what is bothering you.  Pretty soon, I was spilling my guts.  Chris brought us out IBC Cream Sodas.  He told me to stop and just enjoy the cream soda.  I was to let go of all the crap that had happened and just enjoy it for the moment.  When I was finished, I felt a little better, but not enough to counter 8 years of heartache and hurt.  After a while, Chris told me to list 5 good things that had happened that week.  I can't tell you how hard that was.  I felt surrounded by so much bad stuff, finding something I couldn't complain about was hard.

As hard as it was, I eventually managed it.  Chris took the bottles and washed them out and came back with mine in hand.  As he dried it out, he gave me an assignment (he'd make a great teacher.  He loves giving out homework).  Every day, I was to think of just one good thing that had happened.  Just one thing I could be thankful for.  Once I found my one thing, I would write it down on a piece of paper and put it in the bottle.  When I had filled the bottle, we would share another bottle of cream soda.


Pretty soon, I found myself finding joy in the little things.  Even on the bad days, I could hear Chris's voice saying, "So what's one good thing?"  Every day, as I got off work, looking back over my day, I'd find my thoughts of "Oh my gosh, it's been such a crappy day!" change to "Yeah, but at least..."  The bottle of post-its in the cupholder in my car was a constant reminder.

When I finally filled it, we shared cream sodas again and looked over the last year.  On looking back, we realized that I had had only 2 breakdowns in that year, compared to dozens prior to that.  I cried tears of joy as I realized how far I had come. I realized I had shed more tears of joy this year than I had shed tears of sorrow or hurt.

Chris and Sarah told me that people noticed a difference in me and had told them so.  The end of that night, I left with my full bottle in hand as a reminder and a new one to fill up with more good things.

I still battle with my depression at times, but this exercise taught me to look at life differently.  There are times I try to talk myself out of doing something I want to do, but I look at the good, the fun I'll have.  If nothing else, this is another tool in my battle with my depression.

This Christmas is hopeful again. I see the good things again. My outlook has changed. My relationship with God and with others has improved. I am changing the parts of my life that need to change. I'm taking more pride in myself and more joy in my life. Life isn't just the waiting period for heaven, anymore. It's not something I'm forced to endure until I see my Maker. It's something to enjoy again.

My battle may never end.  This may be a fight I'm in for my whole life, but I look at it this way.  God works everything for the good of those that love Him, right?  Even the bad things that happened in my life had their purposes.  And perhaps someone can benefit from my story.

I hope by sharing this with you, it has blessed you in some way.  God Bless and Merry Christmas!

You Suck at Pessimism

Perusing some of my favorite web comics yielded this, today.  I guess I was a little surprised as XKCD is usually a techie, geeky, nerdy comic site.  But, as I've been spending days deciding what to write about, this was as good as anything for inspiration.

Like our protagonist here, I've found myself feeling scared about my illness.  I've run the gamut of emotions regarding my fibromyalgia.  When I was first diagnosed, there was an indescribable feeling of relief:  after years of trying to find out what was wrong and doctors just saying "lose weight", I had an answer.  I can remember before I was diagnosed, if I would have to leave someplace early because of my pain, I'd feel the need to explain it as "my knee is acting up" because that was the only answer I had ever had for my pain.  But truthfully, it wasn't usually my knee.  I'd go home in pain because of my neck or my back or something else.  But how could I say "I'm hurting too much from something and I have no idea why"?

So, having the answer lifted a huge weight off my shoulder.  Since then, I've experienced the highs and lows one would expect with a chronic illness.  The depression that's been around for about as long as my pain likes to rear its ugly head.  It's tough to fight off the feelings that I'm living with this for what will likely be several decades.  It's hard to shake the knowledge that as time goes by, my body will feel worse.  Worst is knowing that I disappoint people with what I can't do, no matter how much those people may understand.

The argument in the comic that it's all about having a good attitude is one that is easier said than done.  When you're looking at someone dealing with chronic pain, it's easy to say "Just have a positive outlook".  But when you're the one dealing with it, it's another thing altogether.  How do you have a positive outlook when you feel 40 years older than you are?  Where is the positive in losing your independence?

At some point, you come to the realization that the negative feelings never go away.  Until a cure is found, you will feel all the stages of grief again and again.  But, in my experience, usually at the end of all this you come to an even deeper realization of yourself.

You come out stronger, more sure of yourself.  You realize that you deal with this crappy disease and you're still alive.  You deal with the pain every day and yet still try to do as much of what you used to do as possible.  And in lots of ways, you end up better for your suffering.  You learn what and who is not worth your energy.  You return to the little things to keep busy.

And, although you have all the reason in the world to be great at it, you really suck at pessimism.

The Little Things: New Mattress

They always say to enjoy the little things in life.  Who's "They"?  Heck if I know, but "they" are right.  There's no guarantee you get the big things.  But the little things are always there.

So, is the feeling of the first night on a brand new mattress a little thing or a big thing?  Well, maybe the owning of a brand spanking new mattress is a big thing, but there is nothing so enjoyable as a good night's sleep.

Last night was my first night on my brand new mattress.  A couple weeks ago, Grandma and I went to Mattressland.  It was a trip we'd planned to have for months, but I had never felt up to doing the shopping involved.  But, we finally managed it and a week and a half later, it was in my bedroom.

After Thanksgiving dinner and all the broohaha last night, exhausted from being sick, I took my nightly meds and passed blissfully into the deepest sleep I've had in over a year.  I slept solidly from 12:30 to about 8:30 this morning.

Sleeping on my new bed is like sleeping on a cloud!  None of the pain I had on my old bed was there.  No pain from the springs or wires.  My bed cradled me softly and carried me quietly to dreamland.  Well, ok, I don't know if there were dreams, but you get what I mean.  I can only hope I get sleep like this for years to come!

Thanksgiving Resolution

Ok, so most people would wait another 5 weeks for the New Year to make their resolution, but I don't want to wait that long.  Waiting is something I've had to become accustomed to with Fibro.  I have to wait for good days to go shopping or wait until my pain med kicks in to go upstairs.  As much as I have to put off, I've started (yes, started....not there yet!) to learn the value of doing what I can now.


So, my resolution, is to write in my blog at least twice a week.  I'm trying out a new bit of software that I'm hoping will help me remember to do this.  If you're interested, it's called Smart Diary.  They have many versions to suit your needs, including a free version and a fully loaded medical version.  I'm currently trying out the free version, but if I find I need more from it, I may buy an upgrade. I haven't decided yet.  But I love that I can track things I want to, like my pain and fatigue, mood, and more.  There are defaults provided, but they can be edited.

I've had a lot of time to think in the last couple weeks.  I'm currently pursuing disability because of my fibro.  It wasn't an easy decision to make.  After family and friends had suggested it for quite some time, I finally had to agree.  I would love to just work a normal schedule.  I don't want to need help.  But there's nothing I can do about it.

So, what can I do?  I can choose to not let this stop me.  I can choose to keep doing what I can and put out of mind what I can't.  I can choose to trust that God has this covered.  I trust God would not have allowed me to have this disease unless he also made a way for me to get through it.

I think this is something I'm going to have to remind myself of daily.  Fibro won't get easier to live with, but it doesn't mean I can't live.  This blog is just one part of that.

The Late Great Update

After about 3 weeks, I figured it's time to update.  I really try to update at least twice a week, but it's been kinda crazy lately.  August is always a nutso month due to the millions of birthdays in our family, including mine.  I had such a great birthday this year, I really wanted to share it, but sleep deprivation does horrible things to you.


A few weeks ago, I had an 18 hour sleep night....well, actually it was day, I believe.  Anyway, that day totally screwed up my sleep schedule, as if I needed any help sleeping poorly.  After that I had major issues.  I couldn't fall asleep until 4 or 5am and I couldn't wake up until the afternoon.  Despite what seemed like a sufficient amount of sleep, I woke up more tired than ever.  Either I was asleep for felt like I still needed to.

I'm kinda used to this more or less, but it kills me every time when it affects my work life, social life.  My CBT Therapist said dealing with the sleep issues would be the first step to dealing with my Fibro.  I was scheduled to see my Rheumatologist the following week, so I brought it up.  The doctor put me on Trazadone and told me if after 1 week, I still wasn't sleeping well, to increase the dose to 2 tabs a night.

Trazadone just made me feel worse.  I would take it and still not fall asleep for hours.  When I finally did fall asleep, I'd sleep all day and wake up more sluggish than ever.  To top it off, I would get dizzy spells several times a day.  It got to the point I couldn't drive farther than my parent's house for fear the dizzy spells would strike.  Fortunately, my little brother was a huge help and could drive me where I needed to go.

After 2 weeks, I called my rheumatologist back and insisted that I needed to try another medication.  I remembered taking Ambien a few years ago that worked well back then, so he prescribed that this time.  I'm glad now the dizzy spells have subsided, though I am writing this at 4am, it's just a weird situation.  I actually went to bed at 10:30 with a headache so bad I was feeling nauseous.  But then I woke up at 1:30 so who knows what's going on....

But, despite all these sleep problems, I was still able to have a wonderful birthday.  I turned 25 this year, and as is tradition in our family, Mom and Dad took me out to dinner at a place of my choice.  Just me and them.  I'd always picked Red Lobster or Tahoe Joe's in the past, but this year I was in the mood for something different.

I decided on dinner at the Crystal Palace.  I was somewhat surprised I hadn't thought of it sooner.  It's been around for 14 years and I haven't been once!  So Mom made the reservations and that night we were treated to a stellar dinner, live music, and I even had a couple dances with Dad.  That's a sight to see, really.  Neither of us have rhythm so we were a bit goofy out there, but it was fun, so didn't really care.

It really was the best birthday I can remember.  I won't say I didn't pay for it, because I sure as heck did.  The next day, Dad had to drive me to the house for my birthday party (Cake and Presents! YAY!) and my body was killing me all day, but the way I see it, there are some things worth the pain.  I think in some ways that's what life is about.  Finding out what is worth the pain and doing it.  The way I figure it, I don't have to attend every event.  I just have to pick and choose the ones that will be the most rewarding.

My First CBT Session

Today was my first appointment for Cognitive Behavioral Therapy.  Walking into it, I truly didn't know what to expect.  All I knew was that it was supposed to give me tools to help with my fibro.  I didn't actually get to meet with the therapist I originally scheduled with.  He had to reschedule, but he didn't have an available time slot until the end of August.  So I set up an appointment with someone else.  Kate (can't remember her last name......sad, isn't it?)

I met with her today.  As she escorted me into her office, we realized that the papers I filled out at orientation weren't in my file.  So, I basically got to start from scratch.  No big.  We started talking about my symptoms:  pain, fatigue, sleep deprivation, depression, crying spells, anxiety, to name a few.  While not really fibro related, we started with the crying.  Something I've never really been able to overcome.  I told her it's most difficult when seeing my doctor because I tend to be nervous about what my doctor will say (especially new doctors), whether they will believe Fibro exists or if it's all in my head.  When the crying spells start, they just don't understand it.  She told me it's not that "weird".  She said it's possible that for me, it's a stress coping mechanism.  She said it's perfectly natural, which just made me feel more comfortable and at ease when I did cry in her office.

We talked a lot about the things I'm going through now, my goals for the future, things I dealt with in the past.  Truly, we kinda jumped around a lot.  But the best part was learning that she had fibro too!  I mean of all things, I got assigned to a therapist who knows EXACTLY what I deal with every day.  She had some resources I hadn't really explored too.  She gave me a copy of a magazine she subscribes to and on the back she wrote the name of a book:  From Fatigued to Fantastic by Jacob Teitelbaum.  So, I'll be purchasing that book and will hopefully have it by next week.

The only real disappointment is that she'll be having knee surgery in a couple weeks.  So, she won't be able to see me again until September, but I really like her.  I like that she can relate well to me, so I can deal with waiting.  In the meantime, I can get that book, and begin working through it.

She also suggested I have a simple blood test done as well.  She said that in some cases, the flu-like symptoms that can come on during a flare could actually have it's roots in the Epsteen-Barr Virus, which typically results in cold sores.  She said some people present without cold sores, but can get sores inside the mouth.  With the canker sores I tend to get, I think it's at least worth looking into.  That virus can be managed with medication so if I test positive for it, I might be able to reduce the severity of my flares.

All in all, my hour with her felt very productive and encouraging.  I can't wait for our next appointment.