I’ve been threatening to do this for a long time. It’s a book in the making. Please feel free to send me a message. If you have stories that you would like to share (anonymously is fine… just having more stories than my own would probably help) that would be great. If you have ideas on how to live your life every day with RA that would be awesome too. What helps you get through? What are your tricks for getting by when you are having one of THOSE days?
This is my work in progress. I will publish it (electronically) after I get through the edits.
I AM NOT A DOCTOR, I AM NOT AN EXPERT, I do not even play one on TV. I’m just me and all I will ever be is just me. This is by no means meant to be medical advice. It’s more just how I get by every day and ideas on how maybe you can adapt my every day to fit yours.
Sometimes I wonder what would actually have happened if I HAD been born in a cream can and that, if they knew now what they didn’t know then, they had opted to not pry off the lid. I wasn’t born so, however (it goes without saying) and as it turned out they were actually stuck with me even when they did know better.
I learned early that doctors were not people that people like me sought out. We are of tougher stuff. We suck it up princess and we only dane to go to doctors or emergency rooms if we were nearly struck dead and even appendicitis wasn’t enough to get me much more than growled at until two weeks after I started my adventure on attention seeking and I ended up under the knife (as indeed it was knife at the time) and it actually turned out that my attention seeking appendix was four inches long and infected, nearly ready to burst.
This was my childhood and adolescence and it became the mantra that played in my head every day of my life. And so it went, and so it goes.
Suffice it to say that when you have RA, you have RA every day. It’s not a sometimes thing. Even when you are in remission, it is there. It’s there lurking, watching, always watching and waiting for an opportunity to flare. And when it flares, you remember why you were happy it was hiding.
So given that it is there always, and that it is your every day companion in one form or another, you have to find ways to live with your new constant companion. This book is a work of heart, it has been lurking there in the back of my mind and I have been determined to write it, one of these days when I get the time and the ambition and the fortitude. I will never have the time. I have come to the conclusion that that is just not going to happen so I may as well suck it up princess and just apply my butt to my chair and git-er-done. Now, If I can just get my people to understand that this is something that I need to do so they will give me the latitude and solitude to work on it.
So here I am, alone in the dark, just me and my keyboard. I’ve picked the most intimidating time of year to start this. It is NaNoWriMo and, while this is by no means a novel at this point, it is writing and if I can hit my target numbers, it will be a perfectly viable piece of work come December when I can sit down and do some editing (and proof reading). For NaNoWriMo, the importance is in the numbers and getting the right amount of words on a page in a single month. For me, the importance is getting my thoughts, my ideas, and more to the point my contemplation on RA down on paper to share with you dear reader.
So… to begin… my story.
I grew up on a farm in western PA. It wasn’t a big farm but it was a great place to grow up. Room to run, places to hide. It was an education in the making. I grew up in a family that was very reluctant to go to doctors and I grew up with the knowledge that I wasn’t likely to go unless I was dreadfully sick. It was a given that I was probably just an attention seeking kid and if my fears weren’t fed they would go away. I wasn’t. So I grew up stoic and I basically sucked it up unless I really thought I was going to die.
This means that, decades later, when I started to have the first symptoms of RA, I remained stoic and shook it off the best I could. I chalked it up to all kinds of things that it wasn’t. Too little sleep. Too much sleep. Stress at work. Too little exercise. Too much exercise. A touch of the flu. You name it, I blamed it on something.
I didn’t go to the doctor when I would ache unbearably from riding too long in the car. I didn’t go to the doctor when we were at Disney World and I had to limp (that’s a lie, I had to hobble and pray I would make it) from the parking lot to the hotel room in the middle of the afternoon with my feet so swollen that I had to loosen my Tevas so I didn’t cut off the circulation in my feet. I didn’t go to the doctor when I spent two weeks with my right knee swollen the size of a honey dew melon and the pain so bad that I couldn’t walk (again with the hobbling) and I had to wear the biggest pair of sweat pants I owned to keep the leg from being too tight and my not being able to pull them on and off. It wasn’t a pretty sight.
I finally went to the doctor when I started getting tender bumps on my hands. Come to find out later that they are called nodules and that I was one of the ‘lucky’ 40% of RA patients that get them. I thought it was a cyst. I wanted my son to smack my hand with a heavy book to try to break the cyst. He said he would if I really wanted him to, but thought it wasn’t such a great idea. He thought I should go to the doctor so she could lance it and I could get back to living my life thee way I was.
It wasn’t a cyst.
One look told me she was concerned. She sent me for blood work.
Three days later, as I was sitting at my desk at work, I got the call from her office. I have RA and I need to get in touch with a rheumatologist immediately. She gave me the name of an amazing doctor and I made the appointment.
Then I google Rheumatoid Arthritis. BIG mistake. Turns out that RA was what my great great (great?) aunt had that turned her fingers into modern art and made her hands painfully complicated.
I completely and totally fell apart..
Turns out I have RA just past the moderately sever point. When I went to the Rheumatologist, I had 37 involved joints. She told me I had had active RA for at least 3 years before I came to see her and it was going to be a forever adventure to get me to the point where I could say I was in even a semblance of remission. The x-rays showed erosion in my fingers, toes, knees and ankles.
She put me on prednisone to try to get anything under control. She put me on methotrexate to fight my out of control immune system. She talked and she listened.
This couldn’t be happening. It couldn’t be real. I was signed up for my first half marathon in just three months. I didn’t have TIME for RA to be in my life.
Little did I know then that RA is the one thing in my life that I HAVE to make time for because it is a very demanding companion and if I don’t make time for it, it makes time for me.
So, why another RA book? There have been several coming out the last few years that are true tails from the trials and tribulations. I’ve read most of them. I have enjoyed a few of them. Most of them are really mostly “this is my story” kind of books, not really the navigational kind of book that kind of leads you to hints and tips for what actually happens in a day and ways to deal with it, cope with the results and understand what might be next.
So here I am, trying to put my hand to what comes next and a care and feeding kind of discussion on what might be coming your way. I’m not an expert. Whatever I say needs to be taken as it is meant to be, from the trenches, not as an expert in any way shape or form. I’m not an expert. I’m not a doctor. I can’t give you (and won’t give you) advice on anything other than just getting through your every day in a way that will maybe keep you a little more sane and a little less in pain.
I guess a good place to start is with what is RA. If you have it, you probably fully understand what it is. If you don’t, but love someone who does or just want to understand better, this is a good place to start.
What is RA
RA, more conventionally referred to as rheumatoid arthritis, rheumatoid disease, autoimmune arthritis or any of the plethora of other names that people use. Typically if you tell anyone you have rheumatoid arthritis they look at you somewhat quizzically and either tell you that it is an old people’s disease or that their grandmother had arthritis and she just took a few aspirin and the pain went away, no biggy.
But it isn’t an old people’s disease. Nearly half a million children in the United States have one form of RA or another. Probably a million and a half people in the United States have RA (nearly three times as many women as men and women tend to get it earlier than men… usually between the ages of 30 and 60) In women, RA most commonly begins between ages 30 and 60 and in men typically later in life than that. And the bestest of all news, if you have someone in your family (for me it was my great great aunt as far as I know) with RA (or for that matter any autoimmune disorder like juvenile diabetes or sjogrens, then you have an even greater chance of having RA.
Rheumatoid arthritis is an autoimmune disease (yeah, I know, more freaking big words). Scary as it sometimes sounds, that simply means that your body’s immune system (the intelligence inside of us all that attacks invading microbes, germs, viruses and bacteria) weirds out (yes it is a word, spell check approved it) and starts attacking your body instead of just the foreign stuff. In RA it typically attacks the joints, but it can weird out even more and attack lungs and heart.
Attacking the joints means that it creates inflammation in the joints (most typically starting in the smaller joints like fingers and toes and working its way in… also typically bilaterally but not always). Inflammation results in thickening of the tissue that lines and protects the joints (the synovial fluid) to thicken causing swelling and pain in and around the joints. The thickening fluid can cause the joints to be stiff (particularly in the morning or after being stationary for a period of time). The inflammation can, over time, cause small joints to be deformed, although this is far less common if the inflammation is addressed and the disease brought under control.
If the inflammation goes unchecked, cartilage (the elastic tissue that covers the ends of the bones involved in the joints can be damaged. Further damage can occur in the bones themselves. Joints can become loose and unstable. They can lose their ability to function normally. Joint damage can not be reversed, which is why getting early diagnosis and treatment is important.
RA typically (but certainly not exclusively) affects the fingers and toes, wrist and elbows, ankles and knees. It can affect other joints (and keep in mind that your ribs and jaw are joints) as well.
But remember a few paragraphs ago I mentioned that it can affect organs, too… it can affect cardiovascular and respiratory systems and the nervous system. This is why doctors consider it to be a systemic (anywhere in the body) disease.
But WHY ME???
It is actually a fair enough question. It is a question I have asked myself hundreds of times. Ironically enough, there are days when I finally have gotten to the point where I’ve started to more ask, why not me? Why would I expect to not have something befall me, after all, I’m not so special, and hell there are nearly a million and a half people in the United States in the same boat. That is kind of a big boat to be in.
Trying to get a number of how many people in the world are also in the ever increasing boat is a little more difficult. Digging into the statistics brought me information that about 6% of the US population has RA while 2-3% in China do.
What Causes It
Yes, there is research. Yes, if you read some of it there are huge words and very technical chunks of information that you can read to find out that there are predilections to developing RA and a higher percentage of people with RA have some commonalities but not all people with RA have those commonalities.
I’ve tried for years to figure out what I did “wrong” to cause this. So far, I’ve figured out that the only thing that all people with RA have in common is… breathing… and I’m certainly not ready to give THAT up yet.
What are the symptoms
First, let me start out by saying that, if you have met one person with RA you have met ONE person with RA. For the most part, we share a lot of symptoms, but we certainly don’t all share the same symptoms and we definitely don’t share the same symptoms in the same way all the time with everyone.
One thing we do all share, at least to one degree or another, is pain. Pain at some level, and it always makes me shake my head at the “one a scale of one to ten” questions that the doctors ask, is the one thing that we nearly all share. But what is a 5 for me might be a 3 for someone else or an 8 for even someone else. The numbering system is so relative that I just can’t wrap my head around it.
One of the keys that doctors tend to look for is, have you had joint pain or tenderness, swelling or stiffness for at least six weeks. Personally, at this point, I have had all of those but swelling for the last several years, so I guess I qualify. But… at what point do you consider, no, I’m not just getting older and therefore am having weird aches in weird places ? And for Juvenile RA, when do you not consider that it is growing pains but that is a symptom of something larger?
Can you tell I have been trying to wrap my head around this for a long time?
To add to the do you have aches and stiffness, to meet the symptoms you can find on line, the stiffness needs to last at least thirty minutes. But if I get up in the morning and take a hot shower or do some light yoga, maybe it only lasts for 15 minutes… OH crap… or if it’s chilly in the house it might last for an hour or more.. geeze..
Small joints are most often involved. Small like wrists and ankles, fingers and toes. But for me I have a problem child knee that acts up. It is the knee that I hurt when I was a teenager and I was riding on a bailer making sure the knotter tied both sides of a bale and I caught my foot and twisted my knee BADLY. That knee has always been a problem for me to one degree or another but I can picture spending twenty minutes trying to get out of the car at my son’s doctor appointment (thank goodness he was 17 and could go by himself) because of the pain and swelling in that knee) and I cringe at the symptom checker of small joints. And when you go to the rheumatologist, they always check shoulders, elbows, hips and knees, so it isn’t always the case that it is in the small joints or that it is always in the small joints.
To further complicate things, they suggest in those online check lists that the same joints are affected on both sides of the body (symmetrical or bilateral). Not for me. Yes, the wrist I broke roller blading a couple decades ago is always problematic but usually both wrists tend to hurt. And when I walk half marathons both hips hurt by the end. But is has never been my left knee that was a problem, always only my right.
So if you are checking off checklists, don’t assume that the checklists are always accurate.
If you have met one person with RA you have met one person with RA.
Symptoms can come and go. You may have periods of time (sometimes long periods of time) when you feel almost normal. You start to think, yeah, maybe I was just imagining things and everything is hunky dory. Then symptoms come back all in a rush and can last for days or weeks or months. This is what we ‘fondly’ term a flare.
If you have any questions or doubts if you might have RA or if something weird is going on in your body, talk to your doctor. It’s much better to feel a little foolish and assume that you might be over reacting than to look back decades later and think… man, if I had only gone to see the doctor THEN maybe I wouldn’t be feeling this way now.
If your body has to deal with higher levels of inflammation, it can lead to collateral problems like dry eyes (dry, irritated, higher light sensitivity) or dry mouth and mouth sores. This is often eventually diagnosed as sjogrens. You may eventually notice bumps under the skin particularly at the joint (but it is not a given that you will and if you do they may go away and come back again later). These bumps are called nodules.
Inflammation can lead to more difficulty breathing and shortness of breath. Inflammation can lead to damage of blood vessels and can affect, as a result, nerves and other organs. Inflammation can lead to anemia, which is one reason we end up having so many blood tests done, to make sure we are as healthy as possible.
But How Will I Ever Know!!!
Again, if you have met one person with RA…
Ironically, RA is difficult to diagnose in its early stages. People don’t always recognize that there might be something forever going on in their body. Sometimes it feels like you’ve been typing too much or walking too much or not getting enough rest or maybe you have the flu but it’s been stretching on for an extended period of time.
If they even vaguely believe that you might accidentally actually have something that needs to taken seriously long term, during the ensuing physical exam, your doctor will probably check your joints for swelling, redness, stiffness and warmth. She may also check your reflexes and muscle strength and ask you how long you have been experiencing this and how long you experience stiffness during most days. He will look at your overall health and medial history, ask about your family history (RA and other somewhat related auto-immune disorders tend to sometimes but not always be hereditary) and will continue to poke and prod. It’s what doctors do. For me, by the time I went to see my family doctor, I had nodules (bumps that could vaguely look like really big cysts and that can take up residence on your knuckles… they happen to roughly 40% of us lucky buggers with RA) and she took one look and sent me to get blood work done.
You will likely get a bunch of blood work done. There are inflammation markers that they look for in the blood work. BUT, these can come back within the normal range (which can lead to it taking longer to find out what is going on in your body) because some people never have it show up in the blood tests. They are considered to be seronegative but have RA just the same. People with RA often have, but not necessarily, an elevated erythrocyte sedimentation rate (ESR, or sed rate), we might or might not have a higher than normal C-reactive protein (CRP) level… this may indicate the presence of an inflammatory process in the body. You probably also will have other common blood tests look for rheumatoid factor and anti-cyclic citrullinated peptide (anti-CCP) antibodies.
More likely to show what it really going on in your body are the x-rays, MRIs and possibly CT scans that they will also order. These will be less likely to prove that you have RA but will show the current baseline extent of the damage that the disease has caused in your joints. X-rays of hands and feet, ankles (and maybe knees), wrists… I also had x-rays of my neck and cervical spine. I’ve had MRIs on my lower back (that ironically diagnosed a massive fibroid tumor that resulted in my hysterectomy) as well as my wrists and ankles.
Make sure that you get copies of your medical records. Not because you’re likely going to get a better answer later, but because you can use these records as kind of an adventure story of your new adventure. You can look back at where you have come from and how you have gotten to wherever it is that you’re going to be when you’re ready to actually start looking at it.
Seriously though, you need to keep your medical records. You never know when you’re going to need them. You never know when you’re going to end up having to find a new doctor because you’ve changed insurance companies or companies where you work or you need to justify why you need to apply for disability. If you have the documentation, you don’t have to figure out how to recreate your history by paying past doctors to back trace your current adventure.
But… what happens when all of the tests turn up absolutely nothing?
Yeah, it can happen. You can go through test after test for months or years only to find out that maybe or maybe not you have any results. Do not give up trying to get answers even if answers aren’t really quickly forthcoming.
Someone I used to work with suffered for several years and doctors couldn’t tell her anything at all but guessed at diagnosis’s and ran test after test after test. It finally got bad enough that she had to take a stint on disability and that was when she was finally diagnosed as seronegative RA. She was very dedicated to reading everything she could about the alternative treatments and finally settled on one that worked for her with the minimal chance of terrifying things happening. It helped but after several years of active RA she was still in pain but back to work.
Seronagative RA happens when patients have all of the tests for RA and none of the blood tests look like they are perfectly fine but they have all of the same symptoms of the people who have the blood tests to prove that they aren’t crazy.
Seronegative means that elevated antibodies are not present but that might just mean that any given person might have a different level of ‘normal’ and they probably actually do have an elevated level. Many seronegative patients actually go on to develop elevated levels and their diagnosis changes from seronegative to seropositive any way.
TRACK YOUR SYMPTOMS… If you are having joint pain and stiffness, swelling, tenderness and redness make notes. Cell phones are a great way to track it. Keep track of whether or not your symptoms are bilateral, on going, or affecting multiple joints. If you have morning stiffness that lasts more than thirty minutes, put it in a notebook or a document on your phone. If you have noticeable inflammation, make note. If you are more fatigued that you think is actually attributable to over working or staying up late, make note. Eye redness (or dryness)? make note. Keep records. And find your own “on a scale of 1 to 10 pain scale and use your own scale to track your symptoms.
Notice any recurring phrases? Once you are diagnosed or even think you might possibly have something weird going on in your body… make notes, keep track. At the very least you can remind yourself when you talk to your doctor and you will be able to convince your own mind that you’re not smoking something good and that you also are not crazy.
But Why Me
I guess it more a question of why not me, really, than why me. I have been thinking a log about purposes in life and what I did to deserve this. I know it sounds very fatalistic to think that way if you look at the sentence to be just the literal meaning. And I guess to some extent I mean it that way too.
What did I do to end up feeling this way so much of the time? Why, when I was just really starting to get reasonably fit did all hell break lose in my body and everything start to hurt. It’s not fair. And it isn’t fair.
Holidays are often stressful for anyone even is you don’t have the added stress of having RA (or any chronic condition for that matter) but they can be particularly trying for those of us who do. There are shortcuts you can take, things you can do differently than you might have thought of doing them, or, let’s face it, things we can lighten up and not do at all if necessary. We just have to think differently and do what we need to do.
You can do this.
I’m sterling with Christmas here because I’m writing this deep in the heart of Christmas. I’m working full time (plus) and trying to maintain my familial relationships and trying to keep my head from exploding. Frankly I’m holding on by a sheer thread of sanity. But I am holding on so there is that.
I’m also starting here because it is the holiday that I most identify with in my memories and my heart, and if I’m undertaking this, I’m undertaking it in a way that will help me in my head, in my heart and in my soul.
When I was growing up, the decorations that we put up around the house, the swags of tinsel and paper bells, the wreaths and the plastic snowman on the cellar porch, all went up periodically through December but the Christmas tree went up on Christmas Eve. In or defense, it was always a real tree and often as not one ‘rescued’ from one of the parking meters in town after they became fair game. But regardless, it went up Christmas Eve and santa was always the one who decorated it.
The iconic symbol of the holiday in a kid’s mind and it was Christmas Eve and in the hands of a fat guy you never got to see (except that year when he came to visit me and sounded disturbingly like my Aunt Bea). I heard kids at school talking about tree decorating parties so I knew santa didn’t do everyone’s tree.
I heard that other people had theme trees. Theme trees? Like the ones you see in catalogs and in stores? TOTALLY, I heard about them and I remember the year that family members had a red and gold tree and another when they had a blue and silver tree. I wondered if they threw away the red and gold bulbs and tinsel so they had somewhere to put the blue and silver. I was astounded.
Oh the stories I heard.
Food is always a big part of holidays and Christmas is certainly no different. If you’re new to the whole RA adventure, you might not know for sure if you have any correlation between food/beverages and your tendency to flair to one degree or another. Some people might be able to. If you know one person worth RA you know ONE person with RA.
It might be the case that a little over indulgence doesn’t cause any reaction. It might be that wheat or corn syrup or chocolate might mean a day of feeling crappy.
I don’t notice that I have any specific food sensitivities, but I do know that I am terrified of the doctor’s warnings that the mess that keep me functional can destroy my liver with a little added alcohol. So all of those well meant gifts of wine that are gathering dust above my cookbook cupboard are going to continue to gather dust and I turn down a beer or egg nog in exchange for festively decorated virgin counterparts. Or just coffee or coke.
I can toast at the office party (that we never actually have anyway) with coke as well as a beer and I don’t have to worry about driving home or acting like an idiot.
I enjoy a little of all of the yummy favorites that I love.
I also make cookies and candy and deserts and anything that I can make ahead well in advance of when I might need them and always when I’m feeling particularly human. I vacuum seal them if they are candidates to have all of the air sucked ou. I freeze them if freezing is an option. It means that I can wip out a couple dozen cookies on demand, open/thaw and yuumminess ensues.
The same goes for turkey carcass stock, ham stock, other soup bases… cook it up when my body approves… freeze and vacuum store.
RA can mean achy hands (bet that’s not a big shock to you, huh?) and achy hands can mean that cutting onions, tearing lettuce, cutting other produce is a real non-treat in any season. If you have some of this squirreled away that’s awesome. If not, there is no shame in trading convenience for not hurting… for sanity. Buy pre packaged lettuce, dehydrated or chopped onions and peppers and garlic and celery. No one will ever know later that you didn’t spend painfull hours doing it yourself.
Alternatively, suck it up and admit to your loved ones that you’re not perfect (they aren’t either) or that you’re not feeling 100%. Ask for help. And when you ask for help don’t criticize the help. It may not be the way you would do it but you’re not doing it. Gracefully accept the help. No one will measure the size of any pieces later.
Ah, shopping. Getting up, getting dressed(ish) and heading to the stores, the malls, seeing the decorations and the people. Dealing with parking and crowds. It can be amazing. It can be incredibly draining.
Shopping isn’t my favorite in any season. Having crabby tired people shopping and arguing with clerks is even less of a favorite. I really enjoy getting out during the holiday season and sitting in the mall’s food court, enjoying a cup of coffee, and people watching. But braving the stores, not so much.
I do like to get shopping done through the year, or get things made for people I love through the year. That means I have to have a place to store presents until it’s time for them to go to their new homes (somewhere safely away from the cat). But it means I don’t have to deal with the stress crap that comes if I wait too long.
The internet is an incredible boon to people like us who have a chronic illness. Yeah, everyone thinks of Amazon for on line shopping, but almost every brick and mortar store that you would walk into has an on line corollary where you can buy nearly everything you can walk into the store and buy (and some things that are either much cheaper on line or only available on line that you can’t get in the store at all) and have it magically show up at your door.
During the holiday season many offer free shipping to entice you to shop at their establishments (and they are frankly hoping that you keep shopping with them after the holiday season).
Most offer gift wrapping and direct delivery to wherever you need to have the gifts delivered to, so you don’t even have to deal with the hassle of going through all of that if you don’t want to (or you aren’t sure you’re going to be up for it).
Staying In Touch
Want to save a little money? Buy Christmas cards the day after Christmas for next year. Want to save some time and sanity? Start signing and addressing them inJuly or September when your hands are having a happy day.
Not in the mood? There are internet stations that play Christmas music year round.
Getting Out and About
Chinese New Year
Three Kings Day