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.