Tuesday, May 31, 2011

My Happy Tool Kit

What makes me smile…

It is so important with any chronic illness that we smile. And anything and everything (legal of course) should be employed. Gather yourself an arsenal of happy tools that you can pull out on those days when you just plain don't feel like smiling.

Here is some of my toolkit:

Her music just makes me smile every single day. She is a regular with my morning coffee and my afternoon tea...

I can't help but smile with him....

We have flowers in our yard.  Until I pick them all. And if I can't do the cutting on a particular day, my hubby is sweet enough to help me.  Did you know that my eyes and nose smile too...

And my stomach loves to smile...

Other times, the smiles just happen...

Or I may have to go outside to find a winged smile...

Or a crabby smile.

And there are times when driving is necessary to bring on a smile...

Sometimes I go online to smile...

I am always collecting new tools because I know I am in this for the long haul.  I want the biggest arsenal, the largest tool kit that will keep me smiling. I hope you start collecting your tool kit too!

Wednesday, May 25, 2011

The Cost of RA

There are some days I get so angry. I can't help but get angry. I have been in this body for twelve years now and still no cure. Heck, not even any real relief for more then an hour here and an hour there. And who am I kidding, I don't ever remember being completely pain free for the past twelve years. It is just a question of degrees. Is the pain barely manageable or not manageable at all…degrees indeed.

So I can't help but get angry sometimes. Angry at the fact that I got this disease in the first place. Angry at the fact that anybody has to get ra. Angry that ra exists at all! 

But what I am most angry at, is that there is no cure for rheumatoid arthritis. And why not?  I find it so hard to believe that with all the money that has been spent on research and the fact that this disease has existed since the caveman, that no one has come up with a cure. 

Do they realize the cost of ra and the return on investment they will receive if they truly find a cure?

And so I set out on my mission to calculate the cost of ra.  I calculate the cost of ra not to show how many dollars are spent by patients but rather what pharmaceutical companies will loose if a cure is found. 

Cost of ra for 1.3 million people (number taken from national institute of health currently diagnosed with ra) x $60,000 ($23,44l + $31,931 + $123,661 / 3) x 20 years of treatment (this 20 years is a guesstimate on my part as I couldn't find any study to use for this number) =  $1,560,000,000,000.00

OK, I think you see my point here.

This doesn't include the cost of surgeries, assistive devices, vitamins and loss of income by patients let alone the pain of ra and it's emotional cost to both the families and patients involved.

And from this calculation,  I suspect why no cure has been sought…it is tragically the cost of ra.

It is definitely about dollars and definitely not about sense!

How do we change this?

Pub med.gov  source used: Financial cost of early rheumatoid arthritis in the first year of medical attention 

Monday, May 23, 2011

Heigh-Ho, Heigh-Ho It's off to work we go...Part 2

The logistics of staying gainfully employed with ra isn't just knowing the "hard facts" of the law or the fine print in insurance polices. It also involves your ability to get up at all and to keep moving. And we all know that with ra, just doing that can be impossible at times.

Even to this day, I still use many of these hints to help me get going or to keep me moving.  As with all things ra, what works for me might not work for you. All I can offer is the hope that maybe one of these tips will help you in some way to get to whatever it is you want to do. Even if it isn't a job.

After being diagnosed with ra, I was forced to set my alarm several hours earlier. Why you may ask (although I am suspecting you may already have guessed)? To take my medications and give them time to kick in before I had to get out of bed.  My ra kept me in such pain, early on, that I had no choice. If I didn't make sure that all my medications where fully working, I couldn't put one foot on the floor. And I was desperate to keep my job and to keep going.

Ahhhhh...the bliss of water. Yes, the joy of standing under a hot shower to loosen up those oh so stiff joints. A good hot shower in the morning definitely got me a tad bit more revved up. But it does add to the prep time. I also always picked out my clothes * the night before (as well as my children's) and prepped all of our lunches. I purchased a timed coffee maker so I could prep the coffee the night before as well. This way, coffee was freshly brewed and waiting for me.

Breakfast usually consisted of cereal, oatmeal or possibly quiche (if I had previously double batch cooked). I also tried to keep fresh washed fruit available.

Guys you are so lucky! Ahhhhh...the dreaded hair and makeup. For this I usually pulled my hair back into a ponytail and I was pretty minimalistic with the makeup. A touch of eye shadow, mascara, rouge and lipstick did it for me. Back when I was working they hadn't come out with Bare Minerals which I swear by now. And for those that insist on blow drying your hair, there are blow dryer devices that some swear by (a stand of sorts so that you don't have to hold the blow dryer in your hands).

My son had the job of clearing the table and stacking the dishwasher while I gathered my daughter, 7 at the time, to walk her to the bus stop. My son walked to high school on his own. He was 17 at the time of my ra diagnoses.

Next I headed onto the 5 freeway running between Valencia and Burbank, Ca.  At that time, I owned a Sabb with a stick shift. Needless to say, one of the very first things I wanted to do was get a car with automatic transmission. We couldn't afford one at the time. Oh how I wish we could!

I know that one of the most frustrating things for me were doctor appointments. None of the rheumatologists in the area stayed open past 5pm. Why? Don't they realize that patients work? Don't they realize how difficult it is to juggle a job, child care and getting to their offices for followup visits, lab work, etc.?  I was lucky in the sense that I could play around with my start and finish time at work. Not flex time per se but something like that. Unfortunately, when I did switch my hours I also had to juggle the care for my 7 year old. My husband worked 24/7 and I swear during those years I was a single parent. Ironically, this practice of closing the doctor's office at 5pm still seems to be prevalent.  And if their office is open past 5pm, it is almost impossible to get an appointment because so many people need later hours. Duh! Hint to rheumatologists or any doctor for that matter!

Think me crazy if you will, but I often went out in my car for lunch to take a nap. I used the excuse that I needed quite time. Truth be told, I was exhausted and needed to sleep. I had a portable alarm clock. We have cell phones now with alarms that will work just fine. And my car was parked in a safe area where I didn't have to worry.

My cubicle, or office, was as ergonomic as I could make it.  I also would get up and stretch, walk around, find any excuse to move every hour so I didn't become like the tin man stuck in my seat. I even kept chemical hand warmers in my desk drawer. These are usually used by hunters for frigid weather. I used them to ease the pain in my hands when they were at their worst.

Twelve years later, I tend to prefer ice packs on my hands and wrists. You may want to rotate between the two (heat and cold) depending on what works best for your individual relief.

Driving home was always a challenge for me. A big challenge because I was so exhausted by then I feared falling asleep behind the wheel. I kept the a/c pumped up and the music pretty loud. I also would sing, talk to myself and yes, tap my face at times to keep awake. And of course, I always had that extra caffeine boost before I left work.

Once home, after hugging the kids, I would crash. Literally. From the sofa I would help with homework or take a nap.

Dinner was usually me reheating something I had double batched cooked from the weekend. And yes, at times I did bring food home from a drive thru or order pizza delivered. We gotta do what we gotta do to keep working.

In hind sight, I wish I had hired a housekeeper. I kept telling myself we couldn't afford it and we probably couldn't. Even one day a week or one day every other week would have been a immense help.  My children have always been very helpful and pitched in all the time but having someone to do the laundry and change the beds would have been such a relief. If you can afford it, do it.

And my last tip for the day...

* For women's business clothing I highly recommend the pant suit. I always tried to buy clothes I could wash as we were tight on money and I have a problem with dry cleaning smells. But if you can afford dry cleaning, by all means buy clothes that require dry cleaning. That is one less chore you have to take on. I also purchased business shirts that required no ironing. For me it was either a wrinkle free business shirt, a shell type blouse (used on days when I couldn't button a thing) or turtleneck in the colder weather. And always...flat shoes. After ra I could never wear heels and even on my best day, my feet just couldn't handle them. The "best shoes" for ra feet needs to be an entire post of its own :-)  We women sure do love our shoes!

So the short of this post is:
* Be sure you let your meds kick in before starting your day
* Take a shower in the morning if you can to loosen up those joints
* Keep breakfast simple
* Use a timed coffee maker so you can prep the coffee the night before
* Keep hair styles simple and consider makeup that has dual purpose
* Buy clothes that don't require ironing and have as few buttons as possible
* If possible, improve your work environment to accommodate your ra
* Use heat and/or ice to relieve joint pain
* Drive a car that is easy on the joints (automatic transmission number one on the list)
* Hire a housekeeper, lawn care, child care help...whatever help you can afford to keep your job
* Find a doctor that has evening hours or one that fits your schedule not theirs
* Order in, do drive through (until your medications allow you to cook more) or double batch cook
* Divvy up the chores and responsibilities among family members (you are family and should share the responsibilities)

Tuesday, May 17, 2011

Life is not the way it's supposed to be!

Not my feet...these are too pretty to be mine. They are my daughter's.

A very dear friend of mine forwarded me an email today with the following quote...

 "Life is not the way it's supposed to be.. It's the way it is.. 
The way we cope with it, is what makes the difference."

This saying really resonated with me. Life is not the way it's supposed to be. I shouldn't have ra. No one should have ra. But, it's the way it is. Simple and true. And, what was even more profound is "the way we cope with it, is what makes the difference". 

I can't change the fact that I have ra. You can't change the fact that you have it either.  But I can change how I react emotionally and mentally to this disease. In fact, that is probably the only thing that I can change about my ra.

And so, every single day that is my mantle, to change how I cope with ra. To change how I react to the pain of my ra. To change how I react to the disability of my ra and most importantly, to change how I live my life with ra. 

My vision gets blurry sometimes about my quest and it takes every single fiber of my being not to just throw up my hands and say, "I quit!" But somehow, someway I keep on keeping on. One foot in front of the other…..

Wednesday, May 11, 2011

Heigh-Ho, Heigh-Ho, It's off to work we go...Part 1

Working can be taxing for even the best able bodied human but working with a chronic illness definitely compounds the challenges. 

I truly know how important it is for anyone to have a job, keep it, and do it with ra. These suggestions are geared more towards the newly diagnosed but I am hoping even the veteran ra worker will find a usable tip or two below.

So, here goes…

1. Get a copy of your employee handbook (if you don't have one already) and familiarize yourself with your company policies that will impact you. You should become familiar with your sick leave policy, health coverage policy, vacation policy, late policy, etc. Knowing what road map to follow while working with ra is critical. 

2. Familiarize yourself with the FMLA (Family Leave Act) You may need to use this at some point and knowing what you can and need to do will be a big relief at the time you may need it.

3. Know if you have disability insurance coverage available at your company and try to understand what is required should you ever need to apply. A lot of companies do not have disability insurance coverage. Also, each state is different. When I first applied for disability, I received it through the state and it was called short term disability. At that time, it was for up to one year.  After a year,  I applied to our federal program known as SSDI (social security disability insurance). My employer did not have long term disability insurance. They were a small company with less then 50 employees. Check your employee hand book. Often it will state whether your company has it or not. At this point, your mission is to educate yourself.

4. Understand your health insurance coverage. In particular, pay attention to the requirements for seeing a specialist (do you need a referral or don't you), what medications are covered by your policy (assuming you have drug coverage) as this will greatly impact what medications you may or may not be able to afford. As we all know, a lot of the newer medications can be very expensive and you will want to know if you   have to pay the bulk of the cost or will your insurance cover it. Also a lot of policies require that your rheumatologist first try the standard ra medications like methotrexate before trying ones like Enbrel, Humira, Remicade, etc. 

5. Does your company carry life insurance for you. I bring this up because once you have been officially diagnosed with ra, getting life insurance on your own will be more expensive. At least that has been my experience. My suggestion is to get life insurance if you can afford it and keep it. Preferably before you are "officially" diagnosed. 

6. Look carefully at what you do every single day on the job. Can you combine steps to save movements. Can you make your job more ergonomic. If you use the phone a lot at your job, I recommend you get a headset. Leaning into the phone, cradled on your shoulder, can and will over time, cause more neck problems and shoulder problems. I have found a reputable website on the ergonomics of office setup that will give you some additional ideas.  We are all different and every job is different. If you don't work in an office setting, check online to see if there are any helpful tools that might work better for you, etc. The easier you make doing any task, the longer your joints will last and chances are, the longer you can continue working.

7. The pain of it all. Talk with your rheumatologist early on about wanting to stay gainfully employed.  Be blunt and ask what he/she will do to keep you working. What pain medications are they willing to prescribe to insure you are as pain free as possible. Often the DMRADS and anti-inflammatory medications don't deal with the pain. Discuss this all in advance! There is nothing worse then getting a terrible flare only to realize that your particular rheumatologist won't consider prescribing any pain medications at all. (Hint: I always tried to start any new medication on a Saturday). I worked Monday through Friday. And above all, be sure your doctor is available for emergencies 24/7. Ask how you should contact them, when can you expect them to get back to you, etc. There is nothing worse then terrible pain and having to wait for 12-48 hours is just plain unacceptable in my book. Trust me on this one…you don't want to find out when you are at a 10 pain level that your doctor doesn't call back on weekends or late at night. NOTE: Some jobs prohibit the use of ANY narcotic medications because of the type of employment. This should be in your handbook somewhere. If you have the type of job that prohibits the use of any narcotic medications, your doctor needs to know this also. A great rheumatologist should have an arsenal of tools to help you with your pain including non-narcotic techniques.

8. And last, consider how much do you want to divulge about your ra to your employer. There are stories from both sides on this subject. Some ra patients believe we should let the world know about ra and thus tell fellow co-workers that we have ra. Others feel they will lose their jobs if they are found out. Only you can judge your work environment and those that you work with on a daily basis. 

9. Considering a career change....please be sure to check in advance all of the above before you accept a new job. And above all, be sure you will have new health insurance before your old expires. There is this gremlin in the ra room called pre-existing conditions that could put you without coverage for your ra for up to 18 months. Be sure you have health insurance at all times if at all possible. As of 2011 that pre-existing clause for adults has not yet kicked in under the Obama Health Care Plan. This means you most likely will be excluded from coverage for ra if you don't already have insurance.

10. How flexible will your employer be should you need to adjust hours, work part time, etc.?  In most cases you will know the answer to this by just thinking about your current employer. Have then been flexible with other employees?  Do they have compassion for employees with extenuating circumstances? Do your fellow coworkers pull together to help out another employer if they need help? If you have answered yes to these questions, then chances are your employer or boss will be sympathetic to you should you need some flexibility in your scheduling or possible a temporary transfer of workload.  Again, at this point you are trying to built up an arsenal of tools should you ever need them to help you stay working.

I have no doubt that this isn't a 100% complete list of the do's and don'ts of working with ra. So if you have any suggestions, feel free to share. We are in this together and maybe together we can find the best way forward.

Other sources for working with ra:
Arthritis on about.com
Arthritis Today Organization
Web MD

Tuesday, May 10, 2011

The Tin Man...That's Me!!

This says it all...

Dorothy is my pre RA. The Tin Man is my post ra. I have been caught in the RAin. I am crickety, rickety and stiff! Stuck in this body of mine.  If I only had a heart. I need to find a heart.

I will follow the yellow brick road, follow the yellow brick road until I reach my home.

Yes, I am the Tin Man now and need to find that magic oil can to free me!

Monday, May 9, 2011

KISS: Simple Soup Recipe

I love food! The smell of garlic being chopped into tiny bits. The joy of smelling fresh parsley before it hits the chopping block. And the blending of ingredients that make me feel like I am a fine artist creating the piece de resistance for my awaiting admirers...my family.

My love for food thrives but unfortunately, my love for cooking waned over the years due to ra. It was the pain. The pain that every single chop, slice, dice, and crush caused on my joints. I got to the point that the very thought of food preparation made me cringe (and yes even cry at times). And I tried all the tricks of the trade I could find online. Nothing worked well enough to keep this cooking artisan at her station. That is, until I discovered how to simplify things.

This simplification process is a work in progress and will always be ongoing. Kinda like the progression of my ra. One day I may find that I can chop...even ever so slowly. On another day, I might not even be able to make it to the kitchen at all. But I have resolved that I will not give up the joy that cooking brings me. I just need to figure out how to modify it so I can keep the flour flying in the air, the soup boiling over and the lingering aroma of garlic in my hair.

Double batching was something I did prior to my ra. Cook twice as much, freeze half and thus, free myself on those nights when I had to work overtime, be at a PTA meeting, or crash and burn in my bed. Now, post ra, I find it a necessity.

This recipe is something I was inspired to create from the short supply of ingredients on hand. I hope you enjoy it as much as I do.


1/2 Turkey Kielbasa * - sliced into bite size pieces
1 box of Chicken broth (I use the organic kind but any kind will do)
1 bag of mixed frozen veggies (I prefer the mixed ones with corn, carrots, string beans or asparagus)
1 can of diced tomatoes (use the entire can including the liquid part)
1 can of kidney beans well drained and rinsed
1 medium onion chopped (if your hands are hurting - use onion powder)
2 cloves of garlic (you can use pre-chopped garlic in the jar or garlic powder or none at all)

* You do not have to use Kielbasa. You can make this a meatless soup or you can substitute one of the following: chicken or turkey meatballs or hamburger meatballs. They all work. I have tried them all. You can also leave out the beans if you prefer. That is why I love this recipe...it has always tasted yummy just so long as I have the primary ingredients of chicken broth, onions, diced tomatoes, and veggies.

In a soup pot add a touch of olive oil and slightly brown the kielbasa. Add the onions and garlic (if you are using garlic powder or onion powder, add them after you add the chicken broth) and cook over low heat for a few minutes until the onions are soft. Be sure not to burn the garlic.

Add in all remaining ingredients and cook until the frozen veggies are done. Serve immediately. I keep a pot of this soup in my frig and eat this often for lunch. I just fill up my bowl and microwave it.

Note: The above recipe is not doubled. If you want to do a double batch, then you will need to double the ingredients.

I have also added potatoes or noodles at times, depending on what I have available.

My family and friends love this soup and I am hoping you will find it easy enough to prepare and delicious enough to be a regular visitor at your home too.


Friday, May 6, 2011

The Medical Journey

Seems to me I am looking at the same road that I just traveled. I am once again having to find another rheumatologist.

To be honest, I am tired of this well worn path. This path that constantly puts me at the mercy of doctors that unfortunately I am having a hard time having faith and confidence in. It wasn't always like this.

Upon my original diagnosis, I was so trustworthy of our medical profession. Like all good patients, I truly believed every single word that any doctor told me. I followed their instructions to the letter including taking all medications prescribed, resting and exercising, eating as healthy as possible, etc. etc. Somewhere along this long traveled road, I have lost confidence.

I am not sure why. I am not sure if anything in the medical profession in particular forced me to this shaky place I now find myself. I just now know that I find this road filled with shadows that I just can't define anymore. And I also find that this particular road is getting more bumpy the longer I have rheumatoid arthritis and now, related immune diseases.

I think part of the problem is that doctors assume (I hate that word) that we all will be miraculously freed from the pain and damage of ra with the newer medications available. True that many patients do OK on these medications but I have yet to hear many stories that they feel 100% again. More likely a 30% -  70% improvement, if even that.

And here in lies my problem...

Since the medications can't cure ra, why do doctors make it seem like if we just take a pill (more likely 5-8 pills) or do a shot or take an infusion, it will all be better? I have no doubt, they want us to have some faith in them, some hope. For this I am grateful, but I think they sugar coat this disease just a bit too much. I think, they don't want to frighten us from the get go of the long road we will have to travel. And, I also believe that doctors don't realize the true pain of ra. I could write a book on how the pain of ra goes untreated or under treated in millions of ra patients.

And so, I find myself on the lonely road again. Walking every so cautiously around the next bend...hoping....praying...I will find the sunlight again.

My recommended sources on how to find a rheumatologist:

Thursday, May 5, 2011

It's the Simple Things!

My masked bandit waiting to be free...

Ra robbed me! One day, over twelve years ago, the life I knew was stolen away and never to return. It has taken me this full twelve years to fully cope (and I am not so sure that we completely come to terms with this disease as it is forever changing) and to realize that it is the simple things in life that really, truly do count.

These past three years, the economy has taken a drastic turn of events for the worse. I believe that many people have been thrown into the turbulent waters that people with ra have been living with on a day to day basis: the inability to provide for your family, the worry of where your next meal will come from, the horror of realizing that you have no work or may loose your job at any given moment, the fear that it all will be gone forever! For those of us living with ra (or any debilitating disease for that matter), we live with these fears every single day. They are the monsters lurking in our lives that at any given moment can overtake our once normal lives and destroy the lives we knew.

At first when I was diagnosed, I fought. I truly believed that if I put on my "tough" face it would all be OK. I was determined to remain who I had become and keep all the things that I had worked so hard to obtain. The security of employment, the security of being a Mom that was the super hero to her children, the security of marriage, and the security of good health. I toughed it out for two years and finally realized that I had to change. I had to give up the things I thought defined me. I had to relinquish the full time, good paying job. I had to move from the area I had grown to love so that our family could survive. I had to give up friends that just didn't understand. I lost the love for writing, knitting, walking, swimming and junking (you know...one man's junk is another man's treasure). I was forced to realize that I was no longer able.

Slowly...ever so slowly I adapted. Looking back now I believe I was living in a cocoon until I had sharpened my survival skills in this new ra world of mine. But from the cocoon I emerged a very capable human.

It took me a full twelve years to redefine my "able". And from the ashes of my former pre-ra self, I believe, I have grown. I now realize what is important to me...the simple things in life. I had heard for years and years, how when one is dieing you never hear them say, "Gee, I wish I had worked more." It took me a good eight years to not say that anymore! Eight years! My success in life was so tied to my career that when that was ripped out, shredded up and tossed aside from my ra, I lost the person I had identified with for 25 years. Slowly (and I do mean slowly) I began to identify again what was important to me as a person, to us as a family, and what friendship truly means. It all changed.

For me, it is the simple things in life that keep me going. The joy of seeing (and not just with my eyes but in photos as well) the beauty that surrounds us. I find it everywhere. Before I had to walk quickly by it to get to my job, to get to a child's event, to get to the store, etc. Now that I don't move so fast, I have more time to notice things. The simple things are everywhere. I find them in nature, I find them in people and more importantly, I have found them in myself.

Is it simple to get to this realization. No. But, do have faith in yourself and above all....do not lose hope.  You too will find the capable within.

The ABC's of RA

It's never easy and that is for sure! Having RA (rheumatoid arthritis) for over twelve years I have learned that indeed, it is never simple. Doing almost anything with ra can be a huge challenge and for me it has been.

Thus...the reason I am now writing a blog. I figured that if I am having so much difficulty with this disease then surely others are also struggling. I don't profess to have the answers....heck millions of research dollars later and the medical community has yet to find a cure. I am just going to try and make it simpler.  Simple ways to talk about ra, simple ways to share the good and bad of ra, simple ways to maybe get things done, simple ways to try and save money while just trying to live and most importantly...

Simple ways to deal with this disease.  I like to call it my KISS approach. Keeping It Simply Simple. I know! I know! That's not the real meaning of that word but I like my meaning alot better :-)

I would love your comments! Your own ideas of how you have coped and how you have made anything simple while living with ra.

This will be a journey and one I am hoping we can share together.