Monday, June 6, 2011

My New RA Story

























RA is only one of over 100 types of arthritis currently known.  Getting a correct diagnoses can be a challenge and may take many visits to your gp to determine what is going on and then get the referral to the rheumatologist.

First and foremost…what you are experiencing is real. Don't let any doctor tell you otherwise! Your symptoms are not a figment of your imagination (as many have been incorrectly told), they are not caused by overwork, having multiple children plying for your attention or caused from menopause symptoms and chances are…they will not go away on their own.

I was very fortunate back in 1998 to have a wonderful general practitioner that understood ra and knew the correct tests to do in order to determine what I had. On the other hand, I personally had never heard the term rheumatoid arthritis. Boy did I have a lot to learn! My recognizable ra symptoms appeared in one finger (at least to me). If I remember correctly (heck we are talking 12 years ago) I had what I thought was a possible paper cut infection. At that time several people in Europe had been on tv with a horrific skin infection that took their lives and this was forefront on my mind when my swollen finger wouldn't respond to the OTC medications I tried. 

Upon first examination, she asked me the traditional questions. What had brought me in on this date? What symptoms, if any, did I have? Did I have a fever at any point? My response was a simple finger (no not that finger!). I put out my pointer finger and showed her my swollen finger. I also explained that I thought it might be caused from a paper cut although I didn't remember cutting my finger but that I did work around a lot of paper. She carefully examined the finger. She then asked if I had anyone in my family with arthritis, particularly rheumatoid arthritis. I told her I didn't think so and asked what was rheumatoid arthritis? Not to worry was her response. She then ordered several blood tests, checked my temperature, examined the rest of me and said she would be in touch with the blood results.

It was New Year's Eve when I got the fateful call. I had just arrived home from work and was in the midst of cooking dinner for our two children when her call came in. She said I had rheumatoid arthritis and that she was calling in a few prescriptions of which I should start immediately. She then referred me immediately to a rheumatologist.

In hindsight (I have had 12 years to reflect on all of this), I believe my first symptoms appeared a year prior to the official diagnoses. It was over the summer and I was having difficulty walking. The bottom of my foot was swollen and tender. I thought it was from walking barefoot on the hard concrete in our apartment complex. After a week it subsided on its own…immediate problem solved. I also remember being fatigued a lot but I was pulling long hours as a corporate trainer, I had two children, and always something had to be done.  

The disease seemed to progress fast and furious from here on out.  Within a few months from my initial diagnoses I was having high fevers, multiple joint involvement (not symmetrical joint involvement) and killer fatigue.  At one point, I was in so much pain I wound up in the er and was pumped full of morphine. 

But, I was one of the lucky ones. Twelve years later and hundreds of stories later, I realize that I had a special doctor that knew her business and knew what to test for when I first went into her office.  And I also realize that this doctor didn't just jump to the wrong conclusion. And I was fortunate in that my blood tested positive for rheumatoid arthritis, making my diagnoses easier.

My heart breaks for those of you still searching, still looking for your answer. All I can say is, "Don't give up! Don't give in and don't settle!" 

Your life depends on it.  RA is a real disease and even if you don't have ra, you can still have one of the other 100 arthritis related diseases.  And even if it isn't arthritis, something is causing you all these problems. Find that doctor that will work with you. Find that doctor that believes you. Find that doctor that will keep searching and working with you through your medical labyrinth. 

Links to rheumatoid arthritis symptoms, treatments, etc.:

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