Thursday, 30 May 2013

Pain Charts Are Biased

I have come to a conclusion: Pain scales and charts are biased against arthritis. And I have a wonderful argument of why.

First of all, it's easy to rate a single pain at its current condition. But when you're asking me of my general condition, most likely you won't get a right answer. You see, if some joints are a 3, two are 5 and my back is at a 9, when averaged out my overall pain is less than 5. However, my back is keeping me from living life. So... How does that work? Especially when your doctor says "Yes, your back is a nine but overall..." But all you can feel is your back?

With arthritis there are no zero/no pain days. There are 8/hurts a lot days, 6/hurts even more days, 4/hurts a little more and the occasional 2/hurts a little days when I'm lucky. But by no means are there zero/ no hurt days. I kind of feel cheated that my painful day is only a 8 but it won't be taken seriously. Another person with an 8 will be cared for (and rightly so), but when I have an 8 day I get an "I'm sorry" and frowny face. I hate that these pain scales and charts -that are meant for people in emergency situations- are often used in rhuematology. It feels completely inappropriate. And it is.

Wednesday, 29 May 2013

Arthritis and Social Security Disability

I have heard many stories of people in America having a difficult time trying to get benefits for their disability. This post contains help for any person in the US with arthritis who would like to apply for Social Security Disability. This article is here for my reader's benefit, and I hope you are able to find guidance in this post. It was written by Ram Meyyappan at Social Security Disability Help. Links to Social Security Disability Help are featured at the end of this article. -Elizabeth

Arthritis and Social Security Disability

 
Though various forms of arthritis may allow you to continue working for some time after the initial onset of the disease, as symptoms progress most forms become increasingly debilitating, putting more and more limitations on your everyday abilities to complete normal job functions and tasks in your personal life as well.



If you suffer from arthritis that is preventing you from working as you once did, you may be able to qualify for Social Security Disability (SSD) benefits through either or both of the Social Security Administration’s (SSA’s) disability programs.


SSD Programs and Technical Eligibility
The Social Security Disability Insurance (SSDI) program, which provides benefits to eligible workers who become disabled, requires you have sufficient work credits and limited monthly income from employment.

Supplemental Security Income (SSI) is a need-based program that requires you have very limited income and other financial resources available to you.


Medical Eligibility Requirements
Being medically eligible for SSD benefits through either program means you must:



· meet the SSA’s definition of disability, which requires you have a medical condition that:
o prevents gainful employment
o has lasted, or is expected to last, at least a year or which is terminal
AND · must prove your condition either:
o meets or matches a listed condition in the SSA’s Blue Book (http://www.ssa.gov/disability/professionals/bluebook/)
OR
o So severely limits your abilities that it prevents gainful employment despite not meeting or matching a listed condition.



Listed Forms of Arthritis
The SSA’s Blue Book contains two primary sections related to arthritis:


· Section 1.04 – Disorders of the Spine – under which facet arthritis and osteoarthritis may be evaluated.
AND
· Section 14.09 – Inflammatory Arthritis – under which rheumatoid and psoriatic arthritis would be reviewed.



Documenting Disability under Section 1.04

For disorders of the spine, the evidence required depends primarily on the area of the spine in which your arthritis is located. Generally speaking however, this listing requires you must document nerve root compression or spinal cord damage or compromise that specifically causes:


· Nerve pain
· Spinal movement limitations
· Loss of motor muscle control, including weakness or coordination problems or degeneration of motor muscles
· Loss of sensory reflexes or motor reflexes


Again, dependent upon where your spinal arthritis is present, your application may additionally need to document:


· Pronounced issues with remaining in the same position for any significant length of time, especially in a seated position,
AND/OR
· Problems with standing and walking or otherwise moving about



Proving Disability under Listing 14.09
Inflammatory forms of arthritis are autoimmune in nature, which means documenting your disability under the listing in section 14.09 requires you prove the presence of inflammatory arthritic symptoms, but may also require you show the additional effects of the disorder on your other body systems or overall condition.

Documenting disability under this listing requires you show:


· Consistent and ongoing problems with inflammation or progressive deformity of:
o A major joint which bears the weight of your body and therefore severely affects your ability to move,
OR
o A major joint in your upper body that severely limits your ability to complete tasks that require fine and/or gross motor control.


You can also prove disability under this listing by documenting the previously mentioned symptoms, in addition to:


· moderate to severe affects on one or more body organs or systems,
AND
· at least two of the body-wide affects of autoimmune disease, which may include:
o malaise
o unintentional weight loss
o persistent fever
o severe fatigue


Other ways you can meet this listing include showing you experience:


· inflammation in your spinal column, or fusing of your vertebrae that causes significant malformation of your spine and makes it impossible for you to maintain a proper stance,
OR
· persistent autoimmune symptoms like those listed above which affect your body organs, systems, and/or full body condition, and which also result in:
o severe limitations in completing daily tasks
o significant reduction in your ability to function socially
o marked limitations in completing tasks in a “normal” amount of time due to inability to concentrate, persist, or keep a consistent pace



Qualifying under a Medical Vocational Allowance
Even if your arthritis doesn’t meet or closely match one of these listing, you may still be able to qualify for disability benefits under a “medical vocational allowance”, which looks at your “residual functional capacity”, which is essentially your ability to complete normal everyday tasks, including typical job functions.


Submitting Your Application for SSD
You can complete your disability application online at the SSA’s website (www.ssa.gov) or in person at your local SSA office. To find a local office in your area, please visit: http://www.disability-benefits-help.org/social-security-disability-locations



Be sure to schedule your appointment in advance, if you decide to complete your application at your local office. The online application process requires no wait and is often the fastest way to file a claim.

 

Article by Ram Meyyappan

Social Security Disability Help
http://www.disability-benefits-help.org/blog

Monday, 27 May 2013

The Pain of Psoriais

Skin psoriasis. Nobody wants it, but some of us get it. And some may be thinking, "Psoriasis? So what? It's just an itchy elbow." But anyone who has it knows that's not the case. Unfortunately even when diseases are very visable, they are still considered to be 'not a big deal.' I can't understand why it would be thought as not a big deal, but the reality is is that psoriasis is a chronic disease which can cause a lot of pain, embarassement and emotional stress. And far too many people don't see it.

I do not have skin psoriasis. I am very lucky I do not have skin psoriasis. I am very thankful I do not have skin psoriasis. However, my psoriatic arthritis had to come from someone and that someone is my mum. My wonderful mum has psoriasis and there is not a day that passes where I wish I could take that away. This was not a life long problem- she got it when I was ten years old during a very stressful time. Regardless, it's a horrible thing to live with. It's not only itchy, but it's very painful. It's painful to live with. Sometimes, even when one does build up the confidence to wear clothes that reveal their psoriasis, it leads to more pain when someone just doesn't understand. I've heard of people with psoriasis being kicked out of pools, hair dressers and other places, or even being mocked.

Psoriasis is so misunderstood. It's not contagious. It's autoimmune. Where as a person's skin goes through cycles of a month, psoriatic skin goes through this cycle in four days. It's very serious and can take over one's life if not treated. And it's just painful. There are no other words I can see fit to sum it up in one word other than painful.

Saturday, 25 May 2013

Pain in the Neck

I had a cold the past week and I'm ninety nine per cent sure it has settled in my neck. Currently I cannot turn my head, look up, tilt my head or move. It's extremely painful and I can feel the tension in my neck. It's been this way for about three and a half days now. Not exactly a good time right now. I had called the hospital yesterday asking to speak with one of the rheumatologists but they never got back to me and the doctor I saw Thursday about my neck (and cold symptoms) gave me antibiotics in case I had a virus and told me my neck should get better- that I probably slept wrong. Yesterday I spent the day in pyjamas and relaxing. When I woke up today in the wee hours of the night in pain, I decided I would relax again today. But after a few hours, I decided enough was enough.

I got dressed, did some washing up and I'm getting work done. I had the day to myself anyway, so it's not as if I'm actually missing out on something. If my neck isn't going to get better on its own, I'm forcing it to. It's not my problem if my neck won't cooperate at the moment. And it's not as if I'm trying to balance on my head: just some gentle stretching. But I think that the thought that I am up and dressed should help me think myself healthy, or at least better.

But another reason I'm doing so is because I'm afraid of Arthur becoming a pain in the neck. I'm so afraid that this is the start of arthritis in my neck. I'm hoping it's not and I'm somewhat sure it is not, but weirder things have happened. Arthritis is such a devastating disease, especially when you're freshly diagnosed but also when it takes over another part of your life. And even when you think you're used to the disappointment, you're honestly not: it's like getting hit with a ton of bricks every time. And you feel that way too.

Thursday, 23 May 2013

"Did You Know You Can Cure Arthritis with..."

I stand at a family gathering, watching the events around me. I had been sitting all day and just needed to stand for a minute. Also, I had a bit too much chocolate cake and hopped standing would help my over filled stomach. That's when my auntie came over to me.

"You shouldn't be standing: it's bad for your back." She means well.

"I've been sitting all day, I really need to stretch." I didn't feel like adding the bit about stuffing myself with cake. I began to ponder the reason standing would be bad for my back when she began to speak again.

"You know, the other day I read about a remedy that works wonderfully for people with chronic arthritis..." I could feel the corners of my mouth move up. Not into a grin, but into a smirk. The kind of smirk that appeared when my mum asked me if I liked a red and white striped blouse and I began to sing 'The Candy Man Can.' I tried to get myself to stop, but I couldn't help it. She explained all about how honey is wonderful for ones immune system and many people have found benefit in it.

"Mum, she doesn't need to hear it," my cousin broke in.

"Yes she does!," my auntie protested, "she could cure her chronic arthritis with this!"

I began to wonder if she knew she would be the subject of a blog post. I let her explain all about honey and its magical benefits. Then I thanked her, said Id look into it,  and sat down to avoid more 'miracles.'

My aunt is just the one of many people who tell me all about arthritis cures. And she is one of millions out there who have ever informed another on miracle treatments. And I am one of a million who have heard it all. And I laugh because they just don't know and they think they're helping so much- sort of like a child. Now, do not misunderstand, I do appreciate the thought and I understand that they would not be giving me recommendations if they did not care. I honestly do appreciate it. But I also wish they understood it's so much more than a spoon of honey, a handful of cherries or a berry flavoured drink can cure. I'd like to think it's as simple as that, but it's not. I wish they could see  the severity and knew how complicated it is. But they don't. And maybe it's my fault since I don't tell them everything, but even when I do I feel like I'm speaking to deaf ears. It takes two to communicate after all.

Tuesday, 21 May 2013

Horrible Gym Class

I was taught that teachers are there to help us. And typically this is the case. Except for gym teachers. 

I used to go to school with very athletic children. Naturally, gym classes were very competitive and intense. And with extremely athletic children comes extremely athletic teachers. The worst was a woman who didn't take 'I can't,' 'I'm sick,' or 'My bone is literally protruding from my skin,' as an excuse to sit out of class or to take it easy. One can only imagine the fun I had in that class: Crying after a horrible game of basketball where she kept yelling at me to push harder. Her encouraging everyone to call me names when I limped heavily. Being treated horribly by her after my doctor made it clear I am not to participate and should do special excersises instead. And my favourite; The time she made me cry of embarrassment when she pointed out how slow I am, how 'stupid' my knees look and why I'm generally inferior.

What gives people the right to bully another over things we cannot help whatsoever? Especially a child who was too afraid to talk in case I got in trouble. Why do they assume they're so better than us? Just because she could run for hours on end doesn't make her a better person, especially because she had to resort to picking on a little girl to make her feel better about herself. I feel bad for her: she felt so horribly about herself that she had to take it out on a little child in order to help her feel better. And I feel bad that she's only concerned with what people are like physically; She's missing out on some great people in the world because they're different, or if they just don't like sports. I can only hope that she made herself feel great for a life time by picking on me, because I don't want another child to go through that as well.

If you ever find yourself in that situation, do not allow it to continue. Talk to someone who can help and don't stop until there are results. Go to many people who could help- and don't stop talking. Tell people who will listen: You might be surprised of who can help in lots of ways. I know you might be worried that it'll get worse if you tell, but it's important for these issues to be brought to light. Try and have a solid support group to stand behind you- whether it's your school mates helping you in gym, or friends in work who will stick up for you when someone is discriminating against you. It's so important we try to end these problems! It's not okay and it never will. 

Sunday, 19 May 2013

The Unspeakable

I did something that's unspeakable. It's the worse thing in the world to do. And even though everyone in the world tells you not to- that it's not worth it under any consequence- I just had to. I know I shouldn't have but I wanted to see what it was like. If I told anyone, especially the doctor, I'll never be trusted again.

That's right- I tried Googling my disease... Oh the shame. Now I'm just so depressed and have the idea I'll never get better swimming about in my head, or at least that's what the doctor said would happen. Okay, no more of that. What I did find out is quite a few things that I didn't know and explains quite a lot!

Such as, did you know juvenile psoriatic arthritis is a rare form of juvenile arthritis? It only accounts for about ten per cent of cases, where as rheumatoid accounts for about seventy five per cent. I feel somewhat special now.

Also, it tends to take years to diagnose since it tends to be very similar to rheumatoid, but doesn't show up in blood work. Unless you have psoriasis and sausage like fingers and toes (a common sign of psoriatic arthritis) it's likely it'll take years to diagnose as well as a very clever doctor.

And my favourite fact! "It's a very mild arthritis." Really? I didn't know that! Here I was, stumbling on stairs, not being able to move some days and giving myself shots twice a week and its only a mild arthritis. I'll be sure to let Arthur know he's only a mild arthritis. He's not aware right now- he thinks he's way more serious than he really is.

Friday, 17 May 2013

How to Get a Doctor to Listen

"How do you get a doctor to listen to you?" This is the ultimate question. The answer is so rare and secretive, that is it priceless. There is just one secret statement that will make a doctor listen and that statement is....

Well. It's more complicated than that. It's hard to believe but doctors are real people. And like the general population, their personalities differ. You're going to get along with some and you will not with others. Some people are introverts and others are extroverts. We all have our good and bad days. Doctors are like teachers: You loved some and hated some, some loved you and others didn't. And it was for many different reasons. Some saw your potential, and others passed you off as nothing special. And it doesn't mean much at times. For example, Teachers said John Lennon would go nowhere. It's the same basic idea with doctors.

First, we have to realise that some people are better at listening than others. This and other parts of their personality will play a part in your care- and it's not always a bad thing. Some have a lot of patience and are very thorough. Like people in our lives, we will become friends with some and will barely tolerate others. We will not always get through to another person- even if its that person's job to listen.

But even with a doctor you've had for years, there are times they just don't listen to a new symptom or pain intensity. This is very frustrating as well. In this case, I have a few strategies to get them to pay attention.

1.) Keep a Journal. Write your pain scale for the day and a small note of the symptom or side effect you would like to draw attention to. Don't write too many details- just the core problem. Too many details or long sentences may intimidate.

2.) Be Specific. I know, this seems to be obvious. And I've been at the point where I wanted to scream "DON'T YOU UNDERSTAND THAT I'M IN PAIN?!" And if you ever do so, please let me know so I can congratulate you on doing what I've wanted to for years. Anyway, what I mean is let the doctor know the pain (or whatever it may be), the intensity, when I happens and for how long, how it affects your life, and what you have been doing to help it. Stick to exactly the problem and direct details. More can come later, but it's easier to focus on a few details at first when trying to figure out a problem.

3.) Persuvere. If they brush you off, bring it up again. If they interrupt you, interrupt them. If they say its nothing, say 'no, it's my body.' If they tell you it's all in your head, tell them they're mental. Do what you must to get the message across, but always remember to be respectful (even if the doctor isn't- your bit of respect may rub off), and try to stay as calm as possible.

It's not easy, and sometimes nothing you do will make them listen. But sometimes it's worth a try.

Wednesday, 15 May 2013

Yoga... Helpful?

Earlier in the week I asked for some suggestions for posts through Facebook and Twitter. The first request/question I got was from Kate Quantrell-Clarke saying "Yoga... Helpful???" Thank you Kate!

For many years I have heard many benefits of yoga. Numerous people have found great results through stretching and strengthing. I think it's important to learn what yoga is and it's original practice. Even though it is presently considered physical exercise, yoga is an ancient practice of strengthing your mind, body, breathe and spirituality. Yoga that is meant to help you physically is called hatha yoga and there are various forms of it. Some are vigorous to build stamina, some are done at certain temperatures, and others are for relaxation and meditation. It can very easily become a life style due to how much it can help one physically and mentally. Gentle forms are highly recommended for people with physical disabilities because of its calm and subtle nature when done at ones own pace.

Now, all said and done it might sound as if I'm a pro at yoga. I am not. I haven't tired yoga in about three or so years. I did do classes at one time however. I used to go to a very gentle class with my mother once a week. Despite it being rather slow, I had a hard time. My mum used to get very nervous that I would hurt myself because I was extremely stiff. I took a lot of precautions and tried to take my time, but even then I wasn't seeing much improvement. I was painful too. I actually ended up putting more stress on myself because I had a hard time and was frustrated. Mum took me out of classes once I hit that point, but also because I was getting sick. And so ended my yoga career. However now that I've found a medicine that works, I might give yoga stretches another try once the weather gets better.

I've heard of a lot of people with injuries and chronic illnesses finding benefit from doing yoga. It Is possible to strengthen, stretch and even rebuild muscle through practicing certain kinds of yoga. In fact, I have heard of a person who was very stiff finding benefit in doing a very simple yoga pose in a special yoga room kept very hot and humid. Even the breathing exercises can really help one! We don't realise it but breathing is such a major part of our life, and we can greatly improve our physical and mental health through learning to control our breathe. If you are thinking about trying it, by all means go ahead! It might be a good idea to talk to your doctor first, and remember to start out very gently and don't push yourself. Getting hurt isn't worth it. If you can, try and find a teacher who knows how to work with chronic illnesses and injuries or a therapist who is willing to use yoga in therapy sessions. Best of luck if you choose to try!

As a side note, there are also many people who haven't found much help through yoga. Some have experienced a lot of pain in the process of it. Don't let this stop you from trying it, or be the thing that pushes you to try. What you do with your body is up to you and you have to decide what is best for it.

Monday, 13 May 2013

Confessions of a (Young) Teen with Arthritis

I'm obviously not a young teenager. However, I once was. And I was a young teenager with arthritis too. That was not a fun time at all. Not only was my body going through all those awkward phases, but I had to deal with arthritis, medicines, side effects and a lot of emotional pain from all that. It's hard to forget life back then. Recently I've thought about that time. And I'm willing to share some of it in the form of confessions. And now I present Confessions of a (Young) Teenager with Arthritis.

1. My mood swings were both hormones and medicine. It's not well known that many medications can cause mood changes in people. Thus it's not surprise that I was very moody. Whilst it doesn't happen to everyone, it happened to me. Fridays were my Methotrexate days and the rest of the weekend could be miserable at times. It was very bad at times, so much so I said a lot of things I still regret.

2. I felt alienated from my peers. Okay, I never exactly fit in with them. But throwing the arthritis in certainly made it worse. I felt like a freak. On top of being a bit too mature for my age and thus did not qualify as a 'normal' girl, I didn't move, feel or even look 'normal.'

3. I got picked on a lot. Kids are cruel and like making themselves feel better by pointing out flaws in others. I understand and I forgive them. What I will never understand is why the teachers had to pick on me too.

4. I was powerless. As a twelve or thirteen year old, there were times I had no say in what happened. When I did have a say, it was usually something like which arm for a blood draw. I didn't get to choose which days I had to miss school, if I needed pain medications, or if a different medication would be more appropriate. In a lot of ways, I felt completely vulnerable.

5. I loved being treated as a normal kid at the hospital. Even though most thirteen year olds rolled their eyes at murals of ducklings or being asked if you would like to blow bubbles during your blood draw, I absolutely loved it! It was relaxing and made things less nerve wracking. Also, there were times it was hard to laugh and be carefree outside. It was easier in a place- even a hospital- that treats you like a normal kid. I don't know about you, but pink tape covering my IV always made it less painful. The baby talk, however, was not appreciated or tolerated. They caught onto that very quickly.

I'm not sure if there are young teenagers reading this, and I'm even more unsure if they would relate.  However I hope they know they are not alone in their fight against arthritis or any other chronic illness. I've been through that, and I know I'm not alone.


Saturday, 11 May 2013

Dancing Arthritis Away

Last night I went out and did something I haven't done in a very long time- I went dancing. I know, it's an insane thing to do! Especially because I haven't been feeling that well all week. But I went out and did it anyway. And it was amazing.

I had a great night and was really sore. But after about three cups of coffee, I was okay. And this morning aside from some stiffness, soreness, and some nausea I am absolutely fine. I'm shocked! My back and hips were killing me all week and then Friday it was like it all vanished. If there is one thing I will never understand, it is arthritis.

It has been said numerous times but I cannot emphasise how when you have arthritis, there are days you are miserably ill and others you are on top of the world! This disease is very confusing, especially when you can barely move on Thursday but can go out dancing on Friday night. It can be frustrating when one day you can do something but the next day you can't. It's upsetting when you can't go do something you really looked forward to doing. I know I'm restating things that have been said a lot in the past but it truly is a physical, mental and emotional roller coaster.

And yes, I realise that I did not make a wise choice. And I'm not even going to attempt to justify it. I know I've preached in the past not to do things that are potentially harmful to your health and I kind of did the opposite. I am a hypocrit. A young, arthritic hypocrit who wasn't strong enough to cancel plans. Isn't that life though?

And yes, I did look like a robot having a seizure. And I couldn't have been happier.

Wednesday, 8 May 2013

Encouragment for Arthritis

A letter to Tom, a friend who is going through a hard time with his arthritis. Also, to anyone who needs it too.

Dear Tom,

Never let arthritis quiet you down. Be loud. Be proud. Be the person you've dreamt of being. A diagnosis defines the way your body works- not the person it contains. A mind is a beautiful thing: Never waste it. Even when your body can't seem to work right, build your mind and you'll go farther than you would ever believe. I know feeling broken can break you, but know that there is always a rainbow after a storm.

It's hard to believe it at times, but there is so much hope. You never know what may work. There will be days when you are on top of the world. And sometimes nothing will be accomplished, but does it matter all that much so long as you tried?

Don't let it stop you. Keep going on. Never let arthritis get in the way of your visions, your ideas and passions. Pain will never be stronger than your creative eye Tom, and the strength of your vision will carry weak joints. Tell us your stories; the world is waiting for those films you make.

Your Biggest Fan,
Elizabeth

Not bad for a person who can't draw cameras.

Sunday, 5 May 2013

Arthritis Edition: Ten Best Things

1. Caps that come off easily.

2. Good days.

3. When someone 'gets it.'

4. Warmth.

5. Hot tubs.

6. Clothes without small buttons or snaps.

7. Comfortable shoes.

8. Doctors who care.

9. When someone remembers your disease and helps before you ask.

10. Medicine that both works and makes you feel good.

Friday, 3 May 2013

Things Healthy People Ask Me

I'm most likely correct when I say people with arthritis or any other chronic illness has probably heard one of these before. And being the very sarcastic teenager I am, I always have a great responce. :)

"Autoim- what? Is it contagious?!"

Autoimmune arthritis means that my own body is the cause of my arthritis. There are very many types of autoimmune diseases  out there, and most of them are chronic. And no, it's not contagious... sometimes I like letting people think that for a moment though.

"Arthritis? Do you have hip replacements?"

No.. I don't have hips of steal. Unfortunately, since most people associate arthritis as an old person's disease it is just expected that all of us have titanium joints.

"If it hurts so much, why don't you use a wheelchair?"

If you're not in pain at all, why aren't you moving all the time?

"Why don't you take the medicine I saw on television?"

Because it's not actually a miracle they say it is. Didn't your mum teach you not to believe everything you see on television?

"Arthritis?! But you're so young!"

Yes! I do have it! And don't tell me otherwise! (I have had people try to tell me I don't have arthritis.)

"Did you know that it might be the medicines causing all your problems?"

Really? I just took medicine because they look like candies!

"Does it hurt?"

No. I'm limping for fun.

"My cousin has arthritis and she can run around, so why can't you?"

Because I'm not your cousin.

"Why do you make it out to be so important? Having arthritis isn't a big deal."

Of course my arthritis isn't a big deal to you! How about we turn the tables and see how you feel?