The Pursuit of Happyness When Part of Your Life Is Called Rheumatoid Arthritis
Waiting to start a new treatment, the past few weeks, I’ve had a crazy idea. If the treatment works, I might “forget” how it was. So maybe I should do something I’ve never done: take an inventory. A couple years ago, a patient commented that she does a brief inventory of her joints with her husband every morning. I’ve always remembered that, but never done it.
The Pursuit of Happyness is one of my favorite movies. Despite the sad parts, I love watching Chris Gardner (Will Smith) hold fiercely to his determination that things will improve. As adversities multiply, he sincerely perseveres through all the “parts” of his life till he reaches the one he calls “happiness.” I’m hoping a new “part” begins soon and maybe if I think of my disease in terms of the movie, I can bring myself to make that inventory list.
The part of my life called “Wonder Woman” “Normal”
Any mountain can be moved, one shovelful at a time, right? So I could accomplish anything by working just a little harder or staying up a little later. I was delighted to successfully juggle as many balls as possible. Year after year, I homeschooled, landscaped, volunteered, remodeled, exercised, cooked, and sewed. But I also filled our lives with play and recreation, arranging picnics, field trips, road trips, and days on the beach. We had little money in those years so I made every meal, even on the road, as well as Christmas gifts and Valentines. The house usually looked like I was ready for a magazine shoot and the freezer was always full. This part could also be called “homemade soup.”
There was illness, but it was transient. Joint flares occurred after each child, but they didn’t slow me down. One time the thyroid disease was out of control and I couldn’t function. But after a several months, it passed.
This part of my life, this part right here, this part is called “Shock.”
When Roo was six months old, the joint symptoms came on like a storm and never really subsided. With them came rashes, fever, and black circles on my toes. After a couple of months and a couple of indifferent doctors, I was diagnosed: “Rheumatoid Arthritis.”
Searching. Reading. Crying. Any of those words could define this time. Functional loss was immediate. The pain was, as a thousand patients have told me, like no other pain. I could only compare the worst joint pain to natural childbirth or a slipped disc.
This part of my life, this part right here is called “Fighting.”
The first thing to swell up and change forever was my feet. The podiatrist who treated my feet helped me find a better rheumatologist. Three other people called on my behalf since the practice was full. We also had to change insurance, but I finally saw the doctor and got a prescription.
By then “it” had spread to enough joints that I couldn’t do many daily tasks. I needed help to take care of my one year old Roo. I hated both of my options: take methotrexate (wean the baby, no more children, and live the rest of your life on medications) OR continue to be less able every day (I couldn’t wash my hair or put socks on my son). I decided to fight as hard as I could to get my life back. And that is how I’ve spent the past seven years of my life.
Which prevails: Unrelenting disease or pursuing “Happiness”?
A prominent rheumatologist wrote to me a few years ago about RA that “Some few are crushed by it, some succeed and are happy in spite of it… it is difficult to have a chronic illness, and for some people it is too much to handle.” I didn’t fully agree with him because physical symptoms are sometimes perceived as personal weakness. Apart from pain, most people experience a loss of function that can be hard to comprehend from the outside. It’s incorrectly perceived as giving up. Whether or not depression affects some of us, I see most fight hard to get as much of their lives back as possible, including happiness. I’m proud to count myself as a “typical RA patient” when it comes to that.
I’ve spoken to and cared about so many people who’ve had this disease steal from them the life or job or spouse they loved – and keep on fighting. And if you’ll read comments on this site, you’ll see what fighters we are – like Chris Gardner. We persevere when it comes to life and happiness, because the disease has taught us at least this much.We persevere when it comes to life & happiness, because RD has taught us at least this much Click To Tweet
Now, the brief awkward moment of my life called “Inventory”: I’ll work on my inventory and maybe post that in a couple days. Stay tuned. And keep pursuing health and “happyness.”
Note: TOMORROW is the first Rheumatoid Awareness Day. Many are creating local activities, but if you can’t do so, you don’t need to go anywhere to participate. Read here and here about how you can be involved and make a difference. Today, February 1, there will be a Facebook chat at 1 p.m. EST here.
More movie parallels
- The Next Three Days: a Movie Review with a Twist
- It’s Just Pain, Right? No, Dr. No, It’s Not
- RA is Tricksy: Wandering by The Two Towers
- Dr. Dolittle and the Rheumatoid Arthritis Specialist
am wondering did you use epidural for labor??
I didn’t have any pain assistance in labor. All of my children were born at home with a certified nurse midwife. The midwives tend to be conservative about interventions unless they are medically necessary so I wasn’t even allowed to have tylenol.
Kelly, I think melissa’s question is great, so important. I have given a lot of thought as to how to keep my life from being centered on myself and my pain. I like melissa’s idea to ask everyone for their thoughts on this question. Any chance you could at some point have this as a new topic for discussion?
yes, as I said, it’s a wonderful topic. I was thinking that I’d post a blog carnival relating to it soon.
My personal inventory is often spiritual. I find myself depressed, lonely, and too self-focused. I mused this week on my blog, at http://www.dailybeingsanctified.blogspot.com, that I feel like no one ever talks to me anymore, except to ask about the latest doctor’s appointment or test. No one asks what I am reading or where I’ve traveled or who I’ve talked to. Because I never DO anything; the disease seems to have taken over my life.
I have determined to spend more time out of myself: write letters to missionaries and pray for soldiers and research charities I can support. Think about something other than RA. Can you and your readers help me out with ideas? What do you do to not get bogged down in hopelessness and despair?
wonderful topic Melissa. Thank you for posting. Can’t wait to see how people respond. For me that is sometimes a short walk outside, especially at the beach or where I can see big sky. Like my post about the swing. I also enjoy focusing on my children, watching movies, and just fun things – my favorite thing is to laugh with them. But you’re so right – being physically limited so you can’t “DO” much can make the walls close in. We have to fight back & it’s hard.
I just had to write today, You are such an inspiration. Your site is always full of so much usefull information. For me it has now been 4 years since I got the DX of Rheumatoid Arthritis and like you I started doing research right away, I was determined to fight this tooth and nail, but there are days when it wears you down, I have dealt with the depression of figuring out how to live with a chronic illness and finding my night table looking more and more like a pharmacy, and the worst is realizing that I am not the same, I cannot do all the things I took for granted. It is humbling to ask for help, but I realized right away that I just had to suck it up and be thankful when a complete stranger offers there help with things. God always sends me an angel in disguise when I most need it. I take Plaquenil daily, Methotrexate 8 a week and every 2 months for the last year and a half a Remicaide infusion, most days its ok, and the days when the fatigue hits or I just feel blah, I have come to accept and realize I have to take it easy, when I do a shopping trip I try to get all I can in one day cause I know I will have to rest 2 days just to make up for it. The hardest has been working, even though I am extremely lucky to be able to do my work remotely, there are still some days when it is a chore as I have to type alot and some days my joints just scream and others the fatigue is so bad I can hardly get out of bed, I am trying to hold onto my job as being on disability will just not cut it for me as I have no outside financial help. If I could be on disablility and still do what I do part time that just might do it. I hope that your new treatment works for you. And as you have said the right rheumatologist willing to work with you is what all of us need, in that I have been extremely lucky with one who is knowledgeable and also willing to listen to me. Cathy
Hi Cathy,
Have you hear of Dragon Naturally Speaking… it’s a great program that will type out the words etc as you speak. This might take some of the wear and tear off your hands. 🙂 Good Luck and Take Care.
Hi Kelly,
I work in a restaurant, so it’s physically demanding. I am so lucky that Enbrel is working for me, started last April. My rheumatologist, nurse and his staff are wonderful. I also take Methotrexate and Meloxicam. It hasn’t been easy since I was diagnosed almost a year ago. Reading your website gives me hope, especially as a single parent. Before I started Enbrel I was bedridden many days and depressed.
I was motivated by Melissa’s post above and my own reflections to post this:
I enjoyed our first FB discussion today with Dr. Davis, Rheumatologist from the Mayo Clinic. A statement he made when he was addressing the effectiveness of biologics versus triple therapy intrigued me. He said, “I also think some patients have reasonable inflammation control but still have pain and fatigue, and these can be addressed by meds sometimes but also through acupuncture, rest, physical therapy, sometimes cognitive behavioral therapy, and mind-body medicine and resiliency training.”
I found these suggestions somewhat helpful but am left to wonder how it is that RA can devastate our bodies with unrelenting pain, fatigue, and often-poor physical mobility when inflammation is controlled. No need to review the quandary about if people always have conspicuous swelling: https://www.rawarrior.com/rheumatoid-arthritis-swelling-my-confession/
Are these symptoms of unrelenting pain, fatigue, and poor physical mobility indicative of ongoing joint destruction, muscle wasting, development of co-morbid conditions or other bio-physiological destruction? I think we who suffer from RA are dumbfounded with the devastating impact of this disease on our quality of life and functioning with so few scientific answers. It is even more confusing when comprehensive medical treatment is not offered. I really appreciated Kelly’s earlier posts about the discrepancy in peoples’ reports of their RA disease activity and physician assessments or treatment plans.
https://www.rawarrior.com/a-paradigm-shift-in-rheumatoid-arthritis-disease-activity-part-1/
https://www.rawarrior.com/disparity-between-rheumatoid-arthritis-patients-doctors-over-disease-activity/
Dr. Davis was forthright in addressing the need for additional research on many areas in rheumatology. He obviously understands the complexity of the disease and the significant impact it can have on people’s lives.
My concern is that historically when diseases were poorly understood, peoples’ mental health has been called into question, which is often found in diseases affecting women more than men. Kelly posted about this earlier:
https://www.rawarrior.com/the-hypochondria-of-ra-pain-do-i-smell-an-elephant/
We know that depression commonly occurs with RA or other chronic health conditions. Another diagnosis that is making its way into the new DSM-V that physicians can assign to people when the disease is poorly understood are the somatic disorders: http://www.healthcentral.com/rheumatoidarthritis/c/80106/158680/comments
I do find it frightening and concerning that so many people with RA post about the lack of empathy and clear medical explanations for their symptoms. People’s motives are sometimes questioned i.e. the need for attention or a desire for disability benefits. Symptoms can also be wrongly attributed solely to depression or other health conditions with a psychological basis such as chronic pain disorders or the somatic disorders.
In my opinion, it is a lack of scientific knowledge, a lack of medical inquisitiveness, and pure laziness or cruelty when the muscoskeletal conditions such as RA are written off as psychologically based. I’ve not read one post by people suffering from RA that made me suspicious of their motives nor have I read one post that made me question someone’s mental health as the basis of their symptoms. My heart just breaks for everybody who struggles to have his or her disease fully understood and when proper medical care is subsequently not available. We’ve got a long way to go.
The correct link for somatic disorders and RA (somatoform disorder) is http://www.healthcentral.com/rheumatoid-arthritis/c/80106/158680/ill
For additional reading: http://emedicine.medscape.com/article/294908-overview
Helen thank you for bringing up this new “somatoform disorders” diagnosis. I’ve read a little about this, and it sounds, to put it in the vernacular, like a crock. I don’t do Facebook, so I’m unfamiliar with Mayo’s Dr. Davis. When he talks about using “. . . cognitive behavioral therapy, and mind-body medicine and resiliency training” to deal with pain, my eyes start to roll. It all goes together: the medical profession’s belief that we all make doctor’s appointments just for fun, that we make stuff up to have an excuse to come see them, and that we all really need to just get a life.
Sorry guys and gals, but you’re really not all that irresistable. I managed to go for 10 years once without going to a doctor except for a strep throat. It was a fabulous decade. My role model is a woman I met years ago who swore, after birthing and raising 10 kids, that the next doctor she saw would be the one who signed her death certificate. I don’t enjoy spending about 15% of last year’s income on medical expenses the insurance didn’t cover. Sorry, buddy, but you know what you can do with your resiliency training.
Today is RA awareness day, and personally, I’m aware! Lots of things hurt. This morning I was walking (slowly and a bit awkwardly) along an arterial street. A state cop was driving up behind me, slowed down to a crawl, and was almost following me for a minute or two. I’ve finally decided he must have thought my uneven gait signaled that I was drunk. Oy vey, just what I need!
Kelly, I can’t imagine anyone has done more than you to raise awareness. Thank you. Please continue your fight for patients’ rights and for a better understanding of what living like this is truly like.
Kelly, all I can say is wow! That was a great post on this one! You have such a talent. You have such a way with words. I can hardly believe how much this disease has progressed since my diagnosis last March! It’s unreal. I’ve learned so much. Thank you for all you do! I’m grateful. I really hope all this awareness helps our disease. I feel it already is! Thank you!!!
Your post is lovely, as are the comments that I read above. I am thankful for you and all your hard work. I know you know that I found you right at the beginning of your blog which fell right at the beginning of my diagnosis. I was searching and grieving for answers and you provided a light for me. Thank you, friend, for all your hard work and determination. I look forward to your inventory and look forward, even more, to the day your inventory changes for the better!
Thank you for this topic — this is something I really struggle with. I try to set aside all the medications, injections, shelves of bottles, as well as all the symptoms, the pain the stiffness, the visible signs (I also have psoriatric arthritis and with this latest flare its all over my face) . . .
I count my blessings every day. I have a wonderful husband and four beautiful children ages 2 to 13. G~d has blessed me in so many ways.
Is that enough to offset the pain and fatigue? Sometimes it is, and sometimes I really struggle. Its not something anyone outside this disease can understand so I’ve given up on going to a therapist.
I haven’t found the magic combination to healing and finding remission, and I haven’t found the magic recipe to finding happiness every day. Its one day at a time for me.
Dear Madi, That is so well said. And I think one day at a time is all we have anyway and that is enough pressure to put on ourselves. Counting our blessings is the best thing any of us can do. Your children and husband must be so glad to have you.
Funny you say that about therapy – I too went anyway – to deal with the fear and grief in the beginning. But you’re right – it’s of limited value when they do not comprehend the disease. Educating them would be beneficial, as with physical therapists, and others in healthcare.
Part of my pursuit of happiness is being able to continue to work as an artist. My income from being an artist supports our household. To do my work I take various medications to help my RA and one of them is a low dose opioid. If the Physicians for Responsible Opioid Prescribing get their way I will no longer have access to this medication because I do not have cancer. The FDA is also moving to make it more difficult for me to access this medication by requiring me to visit my doctor for a paper prescription every 30 days, which means an office visit, which means a co-pay. If that day happens to be one of the days it’s difficult for me to get out of bed and actually move, tough for me.
I’d like to say that my happiness is not dependent on a narcotic for pain management. I’d like to say that the exercise I do, the daily medication and yoga, the acupuncture and massage are all managing my pain. They HELP manage my pain so that I can take a LOW DOSE of pain medication. But… it’s all part of a managed pain program. Take away that small part of of it, the pain medication, and the house of cards will more than likely collapse. If I’m in a flare it will go down in flames faster than a 200 year old pole barn in a grass fire.
I very much appreciate all this blog does to call awareness to RA but if pain management with opoid drugs is no longer an option for those of us with RA (because it’s not cancer!) then many of us will suffer. I do hope this is a matter to which the RA Foundation can give some attention to.
Thank you again for finding the words to express the struggle. I have just passed another loss milestone into the “pain all the time” medication all the time chapter. Trying new meds waiting for them to work. Stretching & consulting with my corner crew readying for the fight. Thank you for being a resource & a place where I can normalize & remember I’m not doing this alone.
Hi Kelly,
Your post saddened me when I read about how you were struck right after giving birth to Roo. As I’ve mentioned to you before, I have a “Roo” too. (He’s 23 now and I still call him Roo, as does his fiance!) Our Roos and our RA make me feel somehow connected to you! It breaks my heart to think of you unable to put his little socks on because of the pain you were experiencing. I feel almost guilty when I read of all of the young moms (dads too, but I guess more moms post?) who are suffering with their little ones in tow. As I was 44 when I my RA hit me full force, my babies were bigger. I had only to drive to baseball practice and do the their laundry, but no longer had to painfully put socks on their little feet. I am glad I kept an inventory of disease activity and pain. It truly helps to look back and see where I was and where I am today, especially when a flare gets me really down. It truly can give us hope and perspective. This disease just stinks. And yet… when I look around, I realize I am happy to be here to enjoy this life, RA and all. Last week, I went to the funeral of a 44 year old mother who died of breast cancer. I know she’d have given her right arm to have more years, even with the pain we have…to be with her three little kids. I feel blessed to be here and try to be as positive as humanly possible. It’s not always easy for us, and no doubt some of us are hit harder than others. This, to me is the most important inventory we can do for ourselves: an inventory of our blessings. Gentle hugs to all, especially Kelly, and wishing you all better health.
I agree, Linda, and there are several blessing-counting posts. I just re-read this one from about 5 wks ago https://www.rawarrior.com/embracing-the-future-even-with-rheumatoid-arthritis/ If I didn’t have a tear from your comment already, I’d have one now anyway. Off to kiss my son.
Sometimes I read things about one of the conditions that I have, RA being one of them, and what has been written really chimes with me, really resonates. I’m going through a very tough time just now, with pain levels that I never imagined were possible. But at the end of each day, as I fall asleep, or at least melt into my bed, I try to think of the positives of the day, not the things I wanted to do and couldn’t. Holding onto a positive attitude is perhaps the hardest thing that we will ever have to do in fighting our conditions. Harder than doing the chores, harder than fighting the pain. But the most worthwhile use of our energy. xxx
Beautifully stated truth Jennie. Thank you.
Hi! I am at a point I call “stagnant”. I am at a standstill, due to many problems with medications, inability to function less than ever and feeling that no doctor is really listening! I get more information from RA Warrior and other sites than my doctors give. After several things do not work, they seem to give up. They get tired of fighting over pain medication that I feel I understand more than them! This posting I just read about POSTERIOR TIBIAL TENDONITIS was amazing…..I have showed my ankle to my foot doctor, my neurologist and my RA doctor, all with no avail. The foot doctor gave me some shots in my ankle area and after a set of four said to give it some time and see what happens…nothing did and he said we should try another round. It help while the shots were given. But had no lasting effect. My feet also swell like balloons! I really think I should find some new doctors…my RA has tried several different biologics which have had either no effect or I had terrible reaction to, or only worker for about 1-2 years then stopped working. Right now I am on nothing. My bloods are out if whack from Prednisone and my pain tolerance has hit about -5. But I know there is something out there! Any suggestions would be greatly appreciated!
I think only a RA Pasient can understand the pain of this disease. I felt very bad when I share my pain and problems with my friends and colleagues,they don’t understand and compare it with normal arthritis pain and includes that they also have these kinds of joint pain. It is really tough to understand our situation.
I am terrified! As I read about the “Mike” story my thoughts rambled! I well understand the fear, however he is much younger, and with my RA/RD onset in 2008 right before I turned 65 I was open to any drug.
My first was the Pred med. with Methotrexate which seemed to work well. Then on to Humira, Plaquinel, Lafludmide, and Xeljanz. Due to circumstances I stopped taking the MTX. (financial). Each medication caused horrible coughing, except Xeljanz which was a mild of and on congestive cough and blurry vision. Now my RA doc wants me to try the Rinvoq. My meds have been over the course of the past 12 years. Now am 76 going on 77. The times of flares I have made it though with no pain meds and fortunately unlike the severe pain others have experienced the flares are short lived. The worst were the side effects when I felt so awful with the coughing I could barely eat or move, when I discovered the SE were the culprit, and stopped the med. Two doctors have tried to get me off the Pred Med with disastrous results. My dose is 5 mg daily and even trying a lower dose left me unable to walk without difficulty. After reading the side effects of the new Rinvoq I am thinking twice. I had a mild heart attack 1 1/2 yrs. ago, and have a stent, plus my other artery is still sort of clogged, but getting my numbers in order and watching my diet I am okay, and do not have high blood pressure and am not overweight. My biggest concern are the side effects and my age. Two and a half years ago my husband had triple by-pass surgery with a stroke to follow. He finally made it home only to experience another heart attack and stroke, with sepsis, seizure and death until I yelled at the doctor that their 12 minute CPR was not good enough. He was put on life support and made it back home 2 weeks later. The B/P med he was on is well known, but the GI bleeding which is a known SE came on so suddenly he went down quickly. I am the only one to care for him and at this point cannot risk my having any form of bad side effect. The first stroke left him unable to walk, and converse normally. He still has maintained a great attitude and is able to feed himself and helps me transfer him. The VA stepped in and the equipment they furnished allows us to get out and go places with his huge motorized wheelchair which after getting him into the truck via a lift seat, and I load and unload the chair onto a lift. The important thing I question is why would I want to take Rinvoq with the listed side effects and jeopardize our well being. Sure my fingers are curved, but my ex rummy and I had a problem, but I still finger type, and my R/D and I seem to be compatible with no undue attacks or bad flares, and I haven’t had to use a cane in almost 3 years. I know you mentioned starting the med, but at my age it terrifies me. I apologize for this being so long, but thank you. And thank you for being there for inspiration, for everything you have done to help others.
When I found your site yrs ago…it was a GODSEND and STILL IS.. AM now 74 yrs old and do NOT TAKE anything with exception of Aspirin( thanks to RA- had surgery 1 month after my DH passed in 2017) My right carotid artery was packed with Plaque which cardiologist as well as my Nurse Prac..said they believed was caused by my RA.. the inflammation creates PLAQUE in artery’s. So – I had a TIA [mini-stroke] and briefly lost vision.. thought was due to my Retina issues, but medical eye doc said no..it was necessary for Ultrasound to check the carotids. HE saved my life. AND with your info over the yrs..I have NOT been on any meds- my first rheumatologist had RA herself and before prescribing Methotroxate, had blood panel done concerning my liver..THey were too high.. so 2 biopies later liver is doing well..BUT other than prednisone when have lung issues.. smallest dose possible for least amount of time.. am actually much better in many ways than in early yrs of this horrid disease.
THANK you so much for your website and BLOG. MAJORLY CHANGED my eating habits..has made all the difference in the world. AM not WELL by any means, had worst winter with “flare” ever for the over 25yrs have had this. I so admire and wonder HOW you gals with families manage to cope. My sons were grown when I was diagnosed.