Now What!

HOW TO MOVE FORWARD AFTER BEING DIAGNOSED WITH RHEUMATOID ARTHRITIS

What!  My body is attacking itself? How does that even happen? 
After being diagnosed with Rheumatoid Arthritis (RA) over 17 years ago, you may have heard those words from your doctor, “your body’s immune system is attacking itself”. That is exactly what is happening when you have RA.  Your body engages in a small private war on itself. The rheumatoid war is a private, unseen attack; initially on the outside of the body; but is fully engaged on many organs on the inside of the body. You would think your own body could be a little nicer to you! 
Having Rheumatoid allows the immune system to attack various parts of your body.  I was surprised when my doctor was explaining this to me.  Like I said in my previous blogs; my Primary Physician referred me to a specialist, a rheumatologist.  My Rheumatologist has been a ginormous blessing for me. He does very hard aggressive treatment with a very soft and caring touch.  He has been there for me through many ups and downs.  One of his patients recommended him to me and I never looked back. Having a physician that listens to your concerns; makes immediate time for you during your flares, and gives you truth and options at all points of your care; is the best way to describe him.  
So, what now? Have you been diagnosed with rheumatoid arthritis? Do you think you have the symptoms that could lead to this diagnosis? Have you had unusual joint pain or fatigue?  What about severely dry eyes or pain in your knuckles? Do you have joint swelling? Surely, these symptoms can go into a mixed bag of conditions and you may think that RA is just treatable joint pain that will go away on its own or maybe with a couple of pain pills; but it is much deeper than that. 
The Arthritis Foundation was an immediate source for me, along with WebMD and Mayo Clinic provided a lot of resources for me. My Rheumatologist, Dr. Michael Stevens; provided me the most information and continues to be a constant source of information along with my treatment.  RA can be tricky at times; it really doesn’t play by its own rules.  Sometimes you have the weirdest symptoms going on and you think it is something completely different; but when you go to see your family physician, or to urgent care; they may have a hard time figuring out why you have these symptoms.  Then they take a harder look at your medical history and find out you have RA; then everything changes, they want to get you to your rheumatologist quickly to make sure they do not give you conflicting medications, or improper treatment. 
I remember in my early RA days having to go to the emergency room for chest pain.  I got there and was for sure I was at the onset of a heart attack.  The physician told me no; you have ‘costochondritis’; which is an inflammation of the cartilage that connects your ribs to your breastbone.  HUH?! I really did not understand what they were talking about, you can get costochondritis many ways but it is very common for people with rheumatoid.  I was happy I wasn’t having a heart attack; but dealing with this constant chest pain that lasted over a week was horrible.  I have also had chronic headaches with dry eyes; neck and spine issues and a whole host of other flares on top of my constant hand, ankle and knee pain.  Oh, did I forget to say constant pain? 
My primary physician started me on a steroid treatment after diagnosis to control my symptoms until I got my first appointment with my Rheumatologist.  My rheumatologist started me slowly with Plaquenil; an immune suppressive drug. I did not get much relief from it, and it messed with my vision a bit, then we went on to low dose Methotrexate; which is normally a cancer drug; but it did allow me to start seeing small improvements.  Then one day I asked him about this newer medication for RA called Enbrel, and injection. We discussed it at length and he gave me the big ups and low downs about the medication and we agreed together to start treatment while still keeping me on methotrexate. 
WOW! What a difference! I was told that it may take a couple of weeks to notice my new medication working but within about 2 days; I was feeling great!  I was walking tall! The group of drugs that physicians may use to treat auto immune conditions like RA are called DMARDS; disease modifying anti rheumatic drugs.  The slow the progression of RA since there is no cure.  It does not mean your days of flares and pain are over, but it definitely has helped me to live a wonderful life.  Like with most medications now a days; the side effects are beyond serious, but 17+ years later I am still grateful for Enbrel. 
Finding a medication for every person is different.  The most important thing is getting to the doctor and getting correctly diagnosed first.   There are a lot of things that have changed for me including my eating and activities.  No; I did not stop doing the fun stuff!!  I still love working out, skating, zip lining; roller coasters and a bunch of other crazy stuff.  Your mindset has to be right; this is not some condition that is just gonna lye around and let you be.  My mornings are absolutely the worst.  It takes me well over an hour just to start really being able to move fluently.  Sometimes I wake up with a limp that goes away after about an hour or sometimes it hangs around for four hours or on its really devious days it just stays all day.  When my right left gives me trouble, I gotta rely on the left, and when they both give me trouble, that may be an extra hour in the bed stretching and trying to get flexible.  
Shoes can be challenging on bad flare days.  Some days my feet will swell beyond my shoe's mid-day so I keep a backup pair nearby.  RA will keep you on your toes, it is like watching one of my favorite TV shows-Survivor---don’t ever think you are safe- or you will get voted out!  I love to laugh and have a lot of fun.  In my life I try not to dwell on my condition; it is only a very small part of me.  I do not want it to be seen before my personality. I see a lot of people in my lifetime that talk constantly about what ails them.  Sure, we should not ignore any medical condition; however, you cannot let it consume you.  You have to live your life and be happy; depression and dwelling on sickness will literally add to your pain and other symptoms. 
Once I really got informed of what makes my RA flare.  I made moves like a person playing chess to eliminate some of the things that trigger flares.  You cannot really tell or predict when an RA flare is coming on or how long it will last; sorry controlling people—RA tries to make sure you know that you have no control over it.  In my early years of RA, it was a bit more manageable to navigate.  My kids kept me busy, young, and having fun. I managed the pain differently because I did not want my pain to be their pain.  As I have gotten older and my kids are grown now, I manage it a bit differently.  If you have been diagnosed, write down some things that you do that you may not have to do, try not to overwork yourself.  I know that is easier said than done.  I have a specific schedule especially during the week, I try to work my main job and use the evening for exercise and relaxing with my family.  People that add on to my stress or cannot take no for an answer or the ones that ask “why” all the time are people that I eliminate or avoid in my life.  I only have time to be happy with my family and enjoy my life, if you have people that constantly judge you or are constantly upset about minor things; try to leave them to their own devices and move forward.  A positive attitude and low stress are what help you to see flare-free days. Even without RA –keep that stress and negativity out!  It will consume you.  
Please continue to read my “No Room for Rheumatoid” blogs.  I will continue to share my stories, treatments; recipes, medications, exercises and other recommendations to help you to continually stay healthy; happy; and moving freely with RA!!!  If you have not read my earlier blogs please take a minute to read them; smile and enjoy!! 

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