10 posts tagged “disability”

Five years ago I had a wonderful job working from home that I absolutely loved.  I was a medical transcriptionist, and I worked at home in my pajamas for really good money.  Five years ago this month, I called my supervisor and told her my pain was so bad I couldn't work anymore, and I quit as of that day.  That pain was later diagnosed as fibromyalgia and depression. 

Over the next 5 years, I saw many specialists, psychiatrists, and therapists.  Five years of people thinking I was faking it.  Some thought my pain wasn't as bad as I said it was. Some thought it was all in my head.  Some said I could work, most said I couldn't.  I even went through an exam to see if I had multiple sclerosis.  Talk about scary!  I went through years of legal hearings to try and get Social Security and never got it.  My pain finally became so bad in July of this year that I couldn't get up off my couch.  After being stuck on my couch for about 4 hours, I had to call an ambulance to take me to the hospital.  Lo and behold, I had a piece of bone lodged against my spinal cord.  A wonderful neurosurgeon removed the bone fragment, and I have now made a full recovery.

So today I called one of my old supervisors at the medical transcription company.  She's as excited as I am that I can work again, and I have an appointment with her next Tuesday.  I should be back in my old job soon!  I can't believe it!  Excellent pay and benefits, and I can work in my PJs.  Not so great news is I'm sure they'll probably want me to work in the office for a week or so on a trial basis before heading home to work.  The only reason that is not so great is because I'll have to get up early and drive to the office :P  How spoiled do I sound?  Ah well... it is a great job, and I loved every minute of it.

I am so thankful right now I can't stand it.

Pardon me while I scream:  YES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Okay not really, but I can't sleep.  For some strange reason, I've had a lot more energy and haven't been able to sleep much at night.  I think it has to do with the fact that I'm finally seeing the progress of my back healing.  Did I mention that all of my fibromyalgia symptoms went away after my back surgery?  I'm almost "normal" again. 

I'm excitedly making plans to go back to work.  It will still be another couple months before I will physically be able to work again, but it's great to know that it's coming.  It's sort of like starting my adult life all over again, and I can choose to be anything I want to be. 

I'm looking forward to a relaxing afternoon today, watching The Golden Compass and working on my new amigurumi crochet patterns (I wish I could tell you about them - I'm so excited!).  This will be a much-deserved break after a very busy week.

About a year ago, I took in my youngest son's friend.  Things didn't go very well, and he had to move out due to behavior issues.  Well, a year changes a lot.  He is now much more mature, working on his GED, working, and even joined the Army.  He just passed his Army test last week.  My rule is that as long as he works hard and follows the rules, I will help him as much as I can and provide a place for him to stay.  Poor kid was living in a motel room and was very depressed before moving in with us.  Fingers crossed and toes crossed that this works out.  He's almost 18, and I want him to have a good chance in life. 

Not sure if I mentioned this before, but my youngest is a graffiti artist.  He's been working on it for a few years now.  Unfortunately, he got it in his head a few months ago that he was going to start tagging places to get rep.  Well, we live in Maine.  There is no rep to get in Maine.  I have talked to him over and over again about how that is vandalizing property and it is against the law.  He didn't see it that way.  Until the police came to our door.  Yeah.  My brilliant kid decided to tag the bathroom at the local grocery store while I was shopping.  On the bathroom wall, he wrote, "you can't catch me."  Funny part is, the police showed up at our door about 20 minutes after we got home.  I was still putting away groceries.  Guess they could catch him.  Why are teenagers so stupid?  So now he has a juvenile corrections officer he has to see twice a month.  She is going to let us know in a few days what the reparations will be, whether he can work off the damage and repair it and do community service or if we have to pay for it.  I'm really hoping they let him repair it himself and do community service.  He'll learn a much better lesson from that.

In a way, I'm glad he got caught.  He was starting to think he was almost an adult and didn't have to listen to me anymore.  Now he will be under this corrections officer's rules for the next six months with court hanging over his head if he does anything wrong.  That will help me keep him in line.

I got prescriptions for Lyrica and Naprosyn last week.  I can't believe it, but they really work!  I'm catching up on laundry.  My house is cleaner than it has been in months.  I'm still really tired and sleep a lot, but it has definitely improved my life.  I have to get an MRI next week for my lower back.  There were a few weeks last month when I could barely put any weight on my left hip.  I could only stand on it for a few minutes at a time and then I'd have to lie down and rest it.  That was the most horrible pain I've ever had (probably because I've forgotten childbirth :P).

Now for a movie and some crocheting...

The way autism affects the lives of my family never ends.  Just when I think we've had a good few days, the phone rings or we get another letter reminding me that my family isn't "normal". 

My 18-year-old son wants to learn to drive.  He signed up for driving school in February, but being in a classroom setting was too stressful for him.  The driving instructor just called me and said they had an opening in a class starting next week.  I said we'd have to consider other options because of the classroom setting, and the instructor told me all the awful things about not taking the classes, mostly that getting hands-on driving instruction only would cost $50 per lesson and he wouldn't qualify for the certificate from driving school that would save us lots on our car insurance when I add him to the policy.

At which point I lost my temper a bit.  See, Mr. Driving Instructor, this isn't about money.  This is about my son's mental health.  I'm sure you thought you were helping me see the big picture, but what you were really doing was pounding home to me, again, that we're different and because of that it will cost us lots more money (as usual) and we don't get the benefits that "normal" people get (as usual).  Thanks so much.

Those seeking Social Security benefits often wait years for OK

Paid in to Social Security?  Hope you never become disabled.  At least this issue is now getting some media attention.

I paid in to Social Security for over 20 years.  Then I became disabled 3-1/2 years ago.  I applied for Social Security Disability, and I'm still waiting.

or... the joy of fibromyalgia.

This is my backyard clothesline (photo through the window screen):

Clothesline

There is nothing quite like it.  The smell of the freshly bleached towels, the coolness of the wet clothes as I'm hanging them out on a hot day, and just enjoying the sounds of nature.  For me there is no more enjoyable chore than hanging clothes on the line.  

What made it extra nice was the huge field behind it and the great breeze it created.  I could do 7-8 loads of laundry a day on that clothesline, and each one would only take about 30 minutes to dry.  That is what I used to do on a Sunday, do laundry all day and be done with it for the week.  What a great feeling.

This is the first year I have been physically unable to get out there and hang out laundry, and I miss it.  But my son still mows around it just in case, which I think is really sweet.

In the back of my mind, I'm considering hiring a housekeeper to come in once a week to help with the things I can't do easily anymore.  Just thinking about it.  Right now it would feel like giving up, and I don't want to give up the extra physical activity just yet.

This is the best way to explain living with an invisible disability that I've ever seen:

The Spoon Theory

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her a spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

This week has been incredibly busy.  I've driven to town and back 4 times.  Yeah, that doesn't seem like much when it's typed out.  We live 30 minutes away from town.  That's 30 minutes of excruciating back and leg pain and cramping.  Ugh.  Half fibromyalgia and half bursitis. 

I already cleared it with my doctor, so I can push myself as much as I need to, I'll just pay for it in pain later.  And I got me one of those handy dandy disability parking placards.

So yesterday on the way back home, I stopped and picked up groceries we would need for the next few days.  Because I'm not going anywhere for the next few days.  I'm going to try to be disciplined and rest.  I HATE it.  Here I am, only 41 years old, and I have to rest for days if I do too much.  It really sucks, and it feels like a waste of time.

But anyway, I did get a few things accomplished.  I picked up some leg bones for the dogs and roasted them last night.  That will keep the dogs busy for a few days.  They didn't have marrow bones, but I can get them another time.  By the way, marrow bones are excellent for roasting and then storing in the freezer for hot summer days.  Dogs love them. (Recipe: Brush with vegetable or olive oil.  Cook them in the oven on 350F for 1.5 hours, then cool).

I stocked up on meals the boys can prepare in case I can't stand for long to cook.  When I'm up to it, I cook big meals for my family.  I've tried cooking extra to save as leftovers for later in the week, but I have two teenage boys.  What was I thinking? But there are days when I can't stand for more than a few minutes, so frozen and canned food comes in handy.

This is turning into a disability survival guide type thing. 

I also picked up a Swiffer.  Yeah, it's such commercialism and I hate that.  But then again, I think it will be a lot easier for me to use than a mop and bucket.  Plus someone on Craftster came up with the idea to crochet replacement covers for it so they can be reused.

OK, so I try not to vent much in my blog.  It's a happy place.  But I'm not in a happy mood today.  I'm in a pissed-off, people-are-idiots mood.

Embarrassing personal background details so you can understand why I am justified in calling these people idiots:  I'm disabled with fibromyalgia (tired and in pain all the time), diabetes, and diabetic neuropathy (nasty nerve pain that drugs don't help).  I have two wonderful teenagers who also have disabilities.  Son #1 has Asperger syndrome (a form of autism), and son #2 has Asperger syndrome, Klinefelter syndrome, and ADHD.  So, yeah, we're not a boring family.  Laughter is our best friend and helps us deal.

Anyway, I was on long-term disability until it ran out in October.  Long story short, I applied and was approved for TANF (welfare) until my Social Security kicks in (*on knees praying*).  As part of Maine's welfare program, everyone is required to attend mandatory meetings with a state-funded "employment agency."  OK, can I first say that if you're so desperate that you are willing to jump through red-tape flaming hoops to get TANF (at approx. $480 a month for 3 people plus food stamps), you've already applied for every job known to man or you aren't able to work.  Period.  OK, to be honest, I gave up my $45K a year job JUST TO SIT ON MY ASS AND WATCH OPRAH.  Seriously, I'm lazy like that.  I gave up the job I got by attending night school for 9 months, my dream job, working at home even.  Yeah, that's it.

So I got a letter about my mandatory appointment with this "employment agency."  I called my Aspire worker (the agency within the Department of Human Services trying to get all welfare recipients to work) and asked her why I had to go to this meeting since I am disabled and so are my children. 
Her answer?  "They make sure you are doing what you are supposed to and help you get SSI." 
My response?  "I applied for SSI 2-1/2 years ago, and I'm just waiting for my hearing date now." 
Her response?  "Oh, well, do you have a lawyer?" 
Me:  "Yes." 
Her:  "Oh, well, they can help you get services for your children."
Me:  "My children already have services. They have their own therapists, psych nurses, and psychiatrists."
Her:  "Well, I'm sorry, but it's mandatory."

*Sigh*.  You know, I'm sure somewhere down the line someone in the state government thought this was a good idea.  Probably.  I'm trying to think positively here.  It's not bad enough that we have 3-4 appointments a week, but now I have to go sit with this woman every two weeks so we can, what, stare at each other?  Puh-lease.

I was told about a county program that deals with autism by a few people.  I called there today, thinking they could actually provide information and services.  *Insert insane laughter here*   They're another same-old same-old case management agency that can "refer you to services available for you in the area."  This is actually code for "there's government money available, and we're gonna get it by providing no real services whatsoever."  

Let me clue you in to a not-so-well-known fact:  A parent with a disabled child or children (especially a teenager) already knows what services are available.  We don't sit around on our asses picking our noses.  Well, only sometimes.  Most of the time we are searching every avenue for a way to help our children.  No matter what you try to make us think, there aren't that many services out there.  Don't refer us to another agency, because they'll tell us the same thing you already did.  Just because a parent is on welfare and/or has a disabled child, that doesn't mean we are of lower intelligence.  Don't talk down to us.  Don't assume we are idiots.  Don't assume this is our first rodeo.

And a special note to those fine folks who look down on people who get welfare:  Not everyone applying for welfare is a deadbeat bum.  Many of us have fallen on hard times, and we need help to pull ourselves back up.  We aren't looking for a free handout.  We just need a way to keep our families warm and fed until we can get back on our feet.  I'd like to bring this up again:  I did not give up a career working at home making $45K a year just to "live off the state."  Get a fucking clue you idiots.  I had to give up my brand new Jeep, my credit cards, my career.  My health is gone.  I don't have one pain-free day, ever.   Because of assumptions by people who don't have a clue, families needing help have to wait through a 30-day waiting period to get welfare.  What do they do for those 30 days with no income and no savings?  Think about that a minute.  What about those people applying for Social Security Disability?  I've been waiting for 2-1/2 years for a decision.  How is that helping anyone?  It sure isn't helping me.

And think about this a minute:  We're not talking about getting rich, or even getting by.  We're talking about barely enough money to pay for a place to live and food.  That's it.  If you're lucky, maybe you can afford internet access.  But going out to a restaurant is a thing of the past.  Want to go to a movie?  Forgetaboutit.  Need a new car?  Tough shit.  Want the security of a savings account?  Sorry, you can't have one.  They count that against you as income.  Wake up and smell the coffee, and maybe open your eyes and see what's really going on.