Managing Rheumatoid Arthritis
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!!
People say, 'when life gives you lemons, make lemonade.." What do you do when life gives you Rheumatoid? I don't think lemonade is the regular treatment or protocol for this. Hmmm, just a thought; it would be nice if the Doctor says, "Oh, you just have Rheumatoid; drink lemonade twice a day and once before bed and you should be good to go!"
That's not what the Doctor said though. I remember after going through a battery of testing, x-rays, questions; family history and physical exams, my Doctor still looking at me with a question mark above her head; okay-only I could see the question mark; but you know exactly what I'm saying right. That look like; by now, we should know what the heck is wrong with you. My normal Doctor was out of the office, but I knew I was in great hands as I had been a part of that physician's practice since my teen years. You know that your doctor wants to figure out what is wrong with you so that they can start treatment. It's like Bingo, a series of random numbers until someone hollers Bingo! Well, no one was hollering?! She assured me she would figure it out, and went on to study test results and to schedule me to come back to see her for follow up.
So how did I get here? How was my life going so great then all of a sudden I am walking hunched over; all of my joints hurt; my vision is a little spotty, I have a rash like a butterfly on my face, and my hands hurt too. A girl I worked with gave me the weird unwanted comment, "you look great with your recent weight loss even though you look like your in a lot of pain being bent over like that." Uhh-Thanks? Yeah, I new something was wrong. She even came to me and said, "My mother has RA". I was like, what is that? Maybe a cheer? Gimme a "R" and the crown says "RRR" gimme an "A", the crowd says "AAA", what does it spell? RHEUMATOID ARTHRITIS! Well; someone forgot to put all the letters in the middle; but you know what I mean. She was right, at the time, I did not know the difference, I knew there were many different kinds of Arthritis, but I knew nothing of this beast.
Before I go to my next appointment; I get a call from the Doctor. "Do you think you can come see me today?". I knew that meant something wasn't right. My mind was off and running. What is it? How is she going to tell me--just blurt it out, tell me it's okay we will figure it out? Or will there still be no answers? I called my Husband, no answer; so I just stuck my chest out and went. I thought, the faster I get there; the faster she can give me some pain medicine or whatever special antibiotic sauce that would make it go away. So let's do this!
The wait in the waiting room was terrible; I thought; you called me so there should be some type of red carpet entry for my diagnosis day, I am sure that the wait was only fifteen minutes, but as I watch every piece of dust fall through the air and heard every conversation around me about how long that older gentleman has been dealing with hemorrhoids and how the cream doesn't work for him any more; I just wanted to get on to my own problem; those waiting room stories were too graphic and too detailed and I don't need to hear about that part of your body specifically.
Finally! I have been put in the room with they young friendly medical assistant that has the lovely smile and tells me my blood pressure is good today. I wanted her to just tell me what the Doctor was going to say, she just said, " the Doctor will be in shortly." Dang it! Just tell me already! As my Doctor comes in with a smile on her face, my shoulders drop at the look of happiness in her eyes! I was confused? What are you smiling about? I swear I did not say that out loud ; however; she answered the exact question in my head! Jean, I am smiling because we finally figured out what is giving you this trouble! I wanted to smile with her, but at this point; unless my x-ray showed a solid gold watch worth a million dollars I may have swallowed and all I have to do is let it "re surface" and cash it in...I am not really certain this is a smiling moment.
The doctor said, well; I thought based on your symptoms; maybe you have Lupus; but you do not have Lupus, so that is good. Okay, so can I go? No. "Jean, you have Rheumatoid Arthritis; also known as RA." OH-WHEW! "I thought I had something bad the way you called me, I am so relieved that it is just RA!" I reflected on what my friend at work told me, didn't sound so bad, not that I was really listening to her. My Doctor was still talking though. I am going to start you on prednisone to relieve some of your symptoms, this will be a band aid until we get you to a specialist. Wait? A Specialist for what? She went on to explain to me the factors, and the history and the prognosis for rheumatoid, it all sounded pretty scary. I have heard of people having Arthritis before and I thought you just take pain medicine for your knees and stuff like that. At that point, she really jumped in on educating me and helping me educate myself on my new diagnosis.
I have currently lived with the diagnosis of RA for greater that 17 years. I was very limited in my thinking on treatment. I learned over that week as the diagnosis settled in my brain that this was a huge game changer. I had just started working in the Medical Community and quickly noticed how when speaking to Doctors or Nurses, if I would say that I have Rheumatoid, they would give me that, "Oh, I'm so sorry" look.
Here are of symptoms of Rheumatoid Arthritis in some people, we all are different. The classic symptoms are: swollen joints, joint stiffness in the mornings, and fatigue. If you are someone like me, I had very few of the classic symptoms that is because I lived with it long before my official diagnosis. Usually they say that rheumatoid mirrors both sides of the body, mine did not. When I was in my late teens, I used to get these horrible rashes on my face and hands but I had no idea what it was, I thought it was a reaction to wearing make up but it was a form of psoriatic arthritis, of course I did not know this until the Doctor did that deep dive into my history trying to find the diagnosis. I went to the dermatologist who gave me steroid injections over the course of several years to keep me cleared up. It kept the symptoms away, but boy did I sausage up on the scale, wow; I went from just "nice thick" size to "full tilt four alarm fire" in no time!
Go to your doctor or get a consult at your local clinic when you have symptoms that do not clear up in a matter of days. Any condition can go from "minor and treatable" to "what the heck is that!?" in a matter of days. With RA my doctor ran a series of blood test that do not come up in your regular blood test. She also did a series of x-rays and scans and looked more into my background and medical history along with a physical exam and constantly reviewing my symptoms.
RA is in a group of auto immune diseases that we will discuss and educate ourselves on as I continue to post on this blog about my dance with the RA beast. I say my "dance" because it is a flowing series of movements that you need to keep yourself going. The diagnosis and prognosis for RA can be quite scary as there is no cure for it. It is your body orchestrating a war against itself. Rheumatoid affects so many parts of your body, from your joints, to your eyes, lungs, skin, heart, kidneys, blood vessels even your nerve tissue and bone marrow. So you can see those are non-joint parts. RA takes up a lot of body real estate and tries to put an end to YOU. Yes, I said it, END. People with RA can have a shortened life expectancy of 10 to 15 years.
You do not have to accept the prognosis for RA, you do not have to be concerned or worried. What you have to do is be properly diagnosed, you have to stay active and educate yourself. Visit the website for the Arthritis Foundation (www.arthritis.org). Read arthritis magazines. Constantly educate yourself about your condition. Stay with me on my blog as we will explore a healthy diet for people with rheumatoid, and exercises and proper rest and motivation so you can bounce back and continue to enjoy your life as I do.
Don't let rheumatoid be the manipulator or the teacher or give it power over you. Take your power back, you are not at the finish line you are at the starting line and we can work together to skip to the loo of life! We can dance with whoever we want and we most certainly can be happy with Rheumatoid. How do I know? Because I am happy with RA, which means I will be a happy person and not give the control to the condition! Smile! I will be back soon with more RA stories and how to conquer the condition!
Jeanius Motivation CEO
"When you get old, you're gonna get the arthritis!" This is what we hear as kids from our elderly family members. Our Loving Grandmothers and Grandfathers that we love to hug and squeeze on and listen to the greatest family stories tell us about how they know the rain is coming because of "the ritis".
I remember my Father always telling me that by the time he was 20 years old, he felt the arthritis in his knees working to break him down. He would say that quite often and would warn me all the time that this will happen to me. He would tell me that I would eventually feel the creaking in my knees, and if I keep cracking my knuckles, "Arthur" would get in my hands and fingers too!
Though arthritis does not just show up through knuckles cracking, and knee popping or even just the old football injury; it can be the sneaky squeaky mouse that gets in through the smallest crevice and reeks havoc on your joints and many other parts of your body. Did you hear that last part? Read it again, I said, "many other parts of your body." and here is the other part of the spoiler alert; it is not have to wait for your senior citizen days to show up! What?! You mean arthritis can do whatever it wants whenever it wants? The answer to these questions-YES; arthritis can throw out the mythical rule book and show up unscheduled just like that old bully you hoped would not be at this years class reunion.
I remember being just a kid in elementary with my best friend laughing about the stories we would hear and mocking like we were old and having a hard time moving and using canes. We often would say that when we would get older we would have matching wheelchairs and canes that would have horns and would be the best of the best and would be motorized. You see, we had been told over and over, that when we get older, this is what we would have to deal with. I look back at those days now and wish that we could have taken some sort of action so we didn't get the "ritis.
You see if you have any form of arthritis; you may know that it is not hereditary, so if someone in your family has it; it does not necessarily mean that you are going to get it. It is not like the crock pot or wedding dress that is definitely getting handed down to you. However, your family genetics definitely give you a higher chance of getting it at some point in your life. Genetics is like the weather person saying that there is a chance of showers. A chance of showers means that --it could rain; but it could also be a beautiful sunny day. When you inherit something the weather person says there is more than a 95 percent chance of rain. So this means that your will likely get soaked at the company picnic that you did not even want to go to anyway.
Rheumatoid arthritis is the chronic disease that shows up inside and outside of your body. It sneaks around and runs a muck in internal spots that will baffle you and bends and contorts you on the outside for the world to see. Rheumatoid shows up anytime on the age scale; so you do not have to be a grandparent to get this non solicited door prize. Rheumatoid can show up as early age 16 or younger affecting that young girl or boy before they have a chance to know if they made the basketball team this year or if it will hurt to use the computer mouse for that dream of being a graphic designer because even the touch screen can be painful. Rheumatoid blows up and inflames your joints and causes them to feel like small fires in your body. Especially your fingers, wrist; feet and ankles. Rheumatoid has a magic wand that can zap your energy at a moments notice and cause you to be stiffer than the tin man from the Wizard of Oz.. Rheumatoid can also show up in the eyes, heart and lung and puts sufferers at a higher chance for heart attacks and strokes.
There is really no room for rheumatoid in my life. We have managed to coexist as rheumatoid has snuck in to hang out with me for well over 25 years, actually for over 30 years if you could the years of psoriatic and osteoarthritis difficulties I started out with at a young age. Back then it was just pain medication for treatment with my primary care physician. As time has move forward over the last 18 years I have successfully worked with my Rheumatologist to manage my condition, recognize painful flares, eat correctly and have a positive attitude with no stress with is pivotal to overcoming and managing this auto immune condition. Positivity and knowing you limits but not sitting and giving in will help you manage this unwanted condition.
My official diagnosis took a lot of different testing to make sure that my symptoms were not something else masquerading as rheumatoid, but when the diagnosis was final; I honestly had no clue what this meant. I really just thought it was like what I had heard as a child---DANG IT--the ritis got me! I just thought when it rained my knees would hurt and everyone would be thankful for my weather report, but it has been much more than that. From the deformity of my hands and the breaking down of my spine, I had no idea where this would lead me.
Come with me on my journey as I continue to share about this chronic condition and my ups and downs of dealing with it. I am a fighter, and I use every minute of my time to fight this illness. Rheumatoid is not taking my life, I am happy with Rheumatoid, I am not happy to have it; I am STILL happy with it! I smile everyday, and through the pain I push, I live my life and I learn about my condition so I can win. If you deal with this; be a winner with me; don't lay down; stop complaining; we need to be informed, up to date and not spend time letting those two initials RA take away our time. Get yourself in check come laugh and smile with me, even though sometimes it literally hurts to laugh---I'M STILL GONNA DO IT!!!