Mascara, Antibodies, and Soup: All I Know about a Disease
I always thought living off fresh smoothies and homemade soup along with regular exercise would keep me strong. And surely working hard and caring for others makes one too busy for chronic illness.
All I know is that I woke up one morning and my toes were pointing out in odd directions because the joints were so swollen.
I didn’t know what inflammation is. I had no idea what a sed rate or a CRP is. And I was not curious.
All I know is that the day before RA, I could run a couple of miles or carry a 50 lb. bag on my shoulder. But suddenly, I couldn’t pull up a sheet with my fingers or stand to have it draped over my toes.
I never heard of antibodies like Rheumatoid factor or anti-CCP. Who cares about those?
All I know is that I could squeeze a frosting tube for hours, decorating hundreds of cookies. And now it’s difficult to hold a mascara wand or blow-dry my hair.
All I know is that I was healthy. And now I’m sick.
I never heard of TNF alpha inhibitors or interleukins or JAKs. I was busy improving my furniture-refinishing, gardening, and quilting skills. I never ever thought I’d learn to draw up a needle. I wanted to learn more about photography, genealogy, and wine.
I was unprepared to watch a doctor to tell my husband, “Your wife is well. There is no illness that does that.” But, I continued to seek help and found a kind rheumatologist. I followed every instruction and took every medication. But, the disease didn’t care.
So I tried to learn more. I read and asked questions. I started this blog. Thousands of people sent me letters and messages with similar experiences and I learned I was not alone.
I had never talked about my health to strangers. Even friends didn’t know I have lived with thyroid disease since I was 15. Just focus on other people’s problems and find a way to help. Bring some soup.
An unrelenting debilitating disease changes some things.
I don’t read magazines anymore; I read drug package inserts.
I’ve learned a lot. Like we don’t know enough about Rheumatoid disease. And that talking about your health is okay and even important to making progress.
I still choose to believe God loves me and has a good plan for my life even if I can’t guess what that is. And that soup helps.
Recommended reading
- Win a Pentax Camera! While You Spread RA / RD Awareness!
- 10 Dumb Questions About an MRI for Rheumatoid Arthritis
- 5 Tricky Questions about Rheumatoid Arthritis / Disease
Kelly, you are amazing and strong and brave. Because of this you will help so many people for generations to come. I have been and still am (when my meds work), stronger than most of my friends (men included) but when inflamed, can’t open a water bottle or mousse my hair! Because of this blog and the wonderful heartfelt comments that i read here, i am humbled by their even more devastating plights that keeps my frustration in check! Thank you!
Cecilia, Thanks for sharing your story. Every time I click on this site, I’m reminded that I’m not alone and not a freak, it somehow makes this RA easier to bear.
Like you, it does wonders for me when i read about how others deal with the stress that goes along with autoimune disorders.
This brought tears to my eyes and a tightness to my chest. As much as I pray no one else will truly know what it’s like to suffer chronic disease…… I do wish more could empathize!
rawarrior Just make sure it’s waterproof mascara. So when it hurts enough to cry, you still look good.
Lots of love to you.As a “beginner” I too never thought that I’d experience such relief & even excitement from 10mg Prednisolone (two doses & my fatigue seems to have lifted).For the past 10 weeks I’ve felt like I’ve had a real bad flu & can’t think where hasn’t hurt at some point. I can’t seem to tolerate them long term, but today am so greatful to feel little better. I had no idea what this “rheumy” stuff was about but I’m learning fast. (somewhat guilty as an RGN for 30years – but hey most of the medics I’m meeting at present -don’t know either). At present I couldn’t cope with my job & just with help hope to get back to some “normality”.
Kelly, again you touched me, I’m fighting tears at my desk at work. God, how devastating this disease is – and how misunderstood by so many! I’ve been in remission for about a year – during which time I divorced the husband who believed I brought the disease on myself by “cheating on my diet”. Only now, a new flare seems to be starting…and I am on my own. At my worst, he was carrying me to the bathroom, I was completely unable to dress or feed myself, legs, shoulders, arms, hands and neck completely frozen and weak. It’s good to know that you have created this community, and I give you all the credit for being an amazing, inspiring, courageous woman. I know you’ve had unremitting challenges, and it crossed my mind while I was in remission that I wished I could give you two weeks of my relief as a gift for walking me through the darkness. If I could gift that to you, I would. Looks like I may be heading back into it – this time, I’m a little more prepared for what it really is and determined to be courageous and persevere, as you have. Be well.
Judy
I wake up every morning expecting all of this to be a nightmare.The constant search for information,this incessant dialogue with strangers about pain,fatigue & medicines. As I read your blog I ache and cry over not being able to open a bottle of water,brush my hair or wipe my backside. Embarrassed by my slowed mobility and unemployment,I plead with a a judge who suggest I’m just another lazy member of society thinking I can collect the money of the many hardworking people. My 25 years of working with the disabled and elderly is not examined. The 2 hours it takes me to look ‘normal’ backfires because I don’t look sick. This disease and it’s counterparts have robbed me of all that I knew. It’s not the injectable biologics that keep me hopeful,but the sad fact I need to because my teenage son has it also,therefore I must journey on literally for his health and our future.Searching for a new way to support ourselves and adjust to the new ‘normal’ these diseases have challenged us to. Blessings to all RA Warriors.
Kim – your message pushed me over the edge, your story makes me weep for you. I can only send you my most heartfelt wish that the courage you’ve shown so far stays with you. Peace and blessings to you in your journey.
Kim, my heart breaks for you and your son, keeping you both in my daily prayers and sending you a big gentle hug
You always seem to see right into my mind. I am so glad we have someone like you out there helping us fight for understanding, recognition, and proper treatment. Thank you so much.
I tell myself that God is using this disease to teach me patience and appreciation for the good things in my life.
Dear Fellow RA Warriors: I am just diagnosed 3 weeks ago. Reading your comments, and learning much from articles on this site, has encouraged me greatly. I think RA is the problem, we are not the problem. Nothing we did or didn’t do gave us this disease. Let us stay strong and fight together. Love and peace to us all.
What a wonderfully articulate and touching post! Moved me to my core….you said it so succinctly and with such courage and emotion in every word. started my day just perfectly! thanks.
Nan
Kelly, your onset story sounded so much like mine. For a few months, I slept on two large firm, but padded, arm chairs, pushed together, surrounded with pillows for my arms, back, knees, and neck and with the sheet draped over the back of one of the chairs because it hurt too much if the sheet touched my feet. Just getting dressed and putting on some make-up took until lunch. I had to have help with my hair. At that time there was no way that I could have gotten out of a bed. Just moving was horribly painful. Enbrel has helped me to lead a new normal life, but there is no way that life will ever be the same. I thank God for Enbrel, my good rheumy, and for what I can do now, though, and try to make the most of the good or the bad days. After that awful time, just waking up and being able to get out of my bed, make instant coffee, etc. is a gift that I think I took for granted until that awful time.
Well said. Thank you ma’am for sharing. Life moves forward, sometimes at RA slo-mo, but always forward.
Yesterday I went to see my PCP. She saw my hands and said “OMG you have rheumatoid arthritis in your hands!” Tonight I am supposed to go to a seminar about estate planning with some friends. It is supposed to snow. I have to decide if I should go or not. One of my feet is going north the other one is going south and I walk like Lurch and don’t have good balance and by the end of the day my arthritic feet hurt so much I can hardly walk. Fortunately I have good friends who help me, one of the blessings in my life. But I think you have to actually have this awful disease to truly get what it is really about.
We must find answers! We are all such wonderful people; no one should suffer!!
I have 3 types of arthritis that they know of including RA
I have been fortunate to have a hairdresser who does my hair twice a week in exchange for me driving her places but the rest isnt pretty
I have found a grocery store that will loosen tops for me before I go home….
I sometimes knock on neighbour’s doors and ask for help – I cant even change my own sheets —
I cant work because when you go for an interview and you have to fall into the chair just the look on the interviewers face tells you that you do not have a chance.
Then when you have to rock yourself up and out of the chair well that’s another hurdle
One thing I havent seen in this blog is a discussion on alternative methods of controlling this disease…it is all about the drugs
I do know that marijuana will decrease the inflammation and lessen the pain and that a vaporizer is the best way to go but it is expensive
Hi Kelly,
I have been fightng RA for 20 years and now have an additional battle – Non-Hodgins Lymphoma. I wanted to verify your last thought and that, yes, God does love you even though it doesn’t always look like it while you are going through trials. Your website has been a huge blessing to me and I just want to thank you for getting the facts about RA and for encouraging us who are joining you in the battle.
Courtney
Hi Courtney,
I’m praying that your treatment for the lymphoma will go well. Thank you for taking time to encourage me. It means a lot.
Hi,
My name is Sue Belle,and have been diagnosed with RA for about a year and a half. am injecting methotrexate and taking 7.5 pregnazone and 20mgs leflutamide,but I’m still in so much pain,can’t really afford embril or humara, are there any pointers on how to get help with this.I’m so glad there are people who understand.Hopefully I’ll be able to help someone in return
Both Humira and Enbrel have assistance programs. Even though I had good insurance and told them I didn’t need the copay assistance and to save it for someone who really needed it, it isn’t insurance or income needs based – they told me EVERYONE gets the assistance for the first year. After that, if you still need help paying the copays, they will work out a way to help you get it. Please go to their websites and look at it all – it is just one phone call, a paper signed by your rheumy and it is all taken care of for you.
I love this post, Kelly. Every time I read someone elses story it helps me to know that I am not alone in this thing. While the drs disregard me and toss me to the side, I know that someone else is dealing with it and one day I will get the help I need.
I am still waiting to find the dr that will help me in this journey. Going back to my very first Rheumatologist and while she is 3 hours away, I do think she will help me…. At least I am hoping she will…
Dear Robyn, I am so *motivated* to help change the future when I hear “disregard me and toss me to the side” from so many hurting people.
Right now I’m spending the past couple hours filling out an application to be a reviewer of research proposals – this form is long and a total pain. But unless patients are involved, how else will we help doctors be better informed?
AND GOOD LUCK!
I’ve lived with RA for almost 18 years. I had weeks when it hurt to hold a hairbrush, could barely get out of bed because of the chronic fatigue and flu-like symptoms. I was a single mother with two teenage daughters and worked a full time job. Do NOT give up hope! The right combination of medications can make a huge difference. It may take some time for your Rheumatologist to come up with the right combination. Be aggressive in fighting your RA, and find a good doctor who will be aggressive on your behalf! I control my disease, it does not control me!
I so appreciate your being here. While I would not wish this disease on anyone, I am glad you are here. I have to temper my visits….make sure I am in the right state of mind, but you are the only one out there mirroring my own experience with RA. I don’t feel like I can 100% trust my docs because they are all about the symmetrical limited joint formula. The only problem is, I am not a test subject and my silly RA doesn’t CARE about formulas and if you weren’t here, I might also think I was a little bit crazy. So, thanks. 😉
Wow! Me too I scream, Me too! I lead such a busy life I have no time for RA ! I had thyroid Cancer about 18 years ago. A Hysterectomy 3 years ago. and just 6 months ago RA was diagnosed with at least 20 years of being told I had Fibromylisa (I never took meds) now they say it was early RA. I am so confused and dont know what to think with no insurance coverage I am limited on my care. in two years from now I may be able to get on a study! I have to be cancer free for 20 years first! Me too Me too is what i scream , but why me ?
I have had RA since I was thirteen years old and I am so sick of it. Medications do not really work, and those that do cause other problems – Enbrel = lung cancer, so no more biologics. Stuck on prednisone for the forseeable future. The final straw was that my 20 year old son was just diagnosed with RA. My heart is breaking for him. He is trying so hard to be stoic. He is a junior in college and is overwhelmed. We need research funding for this horrible disease to find a cure and treatment that works!
Dear Cindy,
I HEAR you. My eldest son is a highschool senior & has shown a few symptoms as well. It is the only thing worse than living with it ourselves is to see it passed on.
Cindy, the same urgency that I hear in your voice is what drives me every day- that we will get better research and treatments and a cure that works – just like you said. For our children, if not for ourselves. The stories I hear every day from people like you are what drive us forward.
I have an autoimmune disorder for many years. You need to avoid chemicals like paint and furniture restoring chemicals. Others with autoimmune disorders told me this and I realized it made a big difference if I was around them. I stay far away from nail salons. Try distancing yourself from these and maybe it will help
Hi Kelly,
I just learned about your and your website through PCORI. I am a stakeholder reviewer for PCORI. I am also a patient advocate. Your story interests me because my mother’s family was rife with RA. Instead of RA, I have SLE (systemic lupus). Other siblings have autoimmune illnesses also. Like you, I thought I was in control of my health. I am a registered nurse and wellness proponent. I ate right, exercised, never smoked, drank alcohol only in moderation. I felt that my body had betrayed me when I was diagnosed with lupus. Oh well, those darn genes! I’ve co-authored a book entitled “If You Have to Wear an Ugly Dress, Learn to Accessorize.” The Ugly Dress is a metaphor for chronic illness and accessories are the positives attitudes, skills, and behaviors that make my life beautiful despite the ugly dress of lupus. My co-author has systemic scleroderma and our mission is to increase awareness of autoimmune illnesses and help others who live with these awful diseases. Best wishes to you and your followers!
I have always been fit and active and ridiculously healthy, and believed that a good diet and plenty of fresh air and exercise were the keys to a long and healthy life.
About 15-16 months ago I started experiencing extreme fatigue. It was as if I would hit a wall and HAD to sleep; I’d fall asleep anywhere, and was scared I’d zonk out one day whilst driving. I suddenly needed a lot more sleep at night too, 8-9 hours a night rather than my previous 6 or 7 maximum, yet I was still having what I thought of as ‘sudden sleep attacks’ during the day and was always exhausted. I had blood tests for anaemia, thyroid function and liver function, all of which came back normal, and my doctor told me I was probably just doing too much. I was studying full-time and working pretty much full-time as well, but I enjoyed my course and I couldn’t afford to cut my hours at work. I actually began to wonder if I was narcoleptic. I cut out sugar but that made no difference, so I cut out gluten and that made some difference, at least to the daytime sleep attacks, although it made no impact on my general tiredness. At about the same time, I started having weird fevers. The symptoms were similar to severe ‘flu, but with only a slight temperature. As well as feeling shivery and sweaty, achy all over and weak and wobbly, the glands in my neck and groin would come up and I’d have shooting pains in my legs and groin. Sometimes I would have difficulty breathing. The attacks lasted anything from a few hours to a couple of days. I mentioned it to my doctor and he shrugged and said it was probably some sort of virus.
I carried on as normal with no further problems until last November. I was still tired all the time and still had the fevers occasionally, although not as severely as the first few times. In November last year I just seemed to lose interest in everything. Everything seemed such an enormous effort. I’d always been a bit of a workaholic, with a busy life, annoyed and frustrated by people with a “can’t be bothered” attitude, and suddenly I found myself unable to get motivated about anything. Over the last few months several people have suggested that I’m depressed; but I didn’t FEEL depressed, just tired and unfocussed. I know what depression is like, having had a couple of periods of depression in my late teens / early twenties. I know the warning signs, and work and exercise and a reasonable social life have always pulled me away from the brink; but this was different. I simply felt overtaken by extreme lethargy and can’t-be-bothered-ness.
Over the winter I noticed that my hands were often painful, but it was a very long, cold winter, and I took little notice. For the last few years I have had two jobs; a winter job, and a summer job in events, which is very physically demanding. I started back at my summer job at the end of March. I have loved what I do since I started working there; I loved working in a team with a bunch of lovely guys, and feeling fit and strong from the physical nature of the work. This year is very different however. At first I thought I was just unfit after the winter working at a desk. Used to often working 10, 12, 14 hour days, day after day in the summers, I was totally wiped out after working only 7-8 hours, not even doing anything terribly physically demanding as I was only cleaning and sorting out equipment ready for the start of the season. A couple of weeks in and I realised that everything hurt all the time; it wasn’t my imagination. Another couple of weeks later, pushing myself harder and harder, hoping to improve my fitness and hardiness, some days I could barely walk I was in so much pain. One morning my hands were so stiff and painful I couldn’t open a bottle of milk for my coffee, and later on I burst into tears at work because I was cleaning equipment and my hands were so painful I could hardly hold the scrubbing brush. I told my mum who suggested it might be RA. She herself was diagnosed with RA at 17. It hadn’t even occurred to me that that might be what was wrong. I had a long conversation with mum and the symptoms I’d been experiencing were identical to those she’d had before her diagnosis: the sudden sleep attacks, constant fatigue and extreme tiredness, the sudden can’t-be-bothered-with-anything-everything-is-too-much-effort, and then later of course the pain. I started taking painkillers to control the pain, made an appointment with my doctor, and spoke to my employers (who are lovely, but seem to think it’s akin to having a bad back and keep telling me to shout for a hand if I have to lift anything heavy, unable to grasp that when it’s bad, it doesn’t matter if I’m hefting heavy equipment about or wielding a paintbrush). I am currently waiting for blood test results but I am 99.9% certain that I will test positive for RA. In the space of just over a month, I have gone from pretty much fine (apart from the tiredness), to being unable to function normally without painkillers most of the time. When I saw my doctor just over a week ago, although I was experiencing severe pain in my joints, especially and chronically in my hands and wrists, I had little swelling except first thing in the morning in my hands and feet. That’s changed! The pain in my hands and wrists is constant, but the pain elsewhere moves about; in the last week it has worked down my body: jaw, elbows, sacroiliac joint, hips, and then my knees, ankles and feet. When it got to my knees, the painkillers didn’t seem to be working at all, and as well as chronic achey pain I was getting stabbing pains in my knees. When I got home after work and took off my work jeans, I started laughing because I looked like a heron: giant, melon-sized knees in the middle of otherwise normal legs. The next day my knees were still a little swollen, but the pain and swelling had moved to my ankles and feet, my feet so swollen that where the arches of my feet usually are, instead there were big lumps.
I just realised that in the last paragraph I wrote “unable to function normally without painkillers”: not true. I can’t function normally WITH painkillers; they just dull some of the symptoms. It sounds a really strange thing to say, but even when it’s not painful thanks to painkillers, the pain is still THERE. I’m still aware of it, I still know I’m in pain, can still somehow feel it even if it’s not actually PAINful – does that make any sense?! It did to my mum, even though I thought it was a pretty bonkers thing to say. It’s similar to the sensation you get after dental work just as the anaesthetic is starting to wear off. I’m so much slower than I was. There are things which I could do easily a few weeks ago which have become increasingly difficult. I feel most of the time as though I’m recovering from ‘flu: the tiredness and fatigue totally drain me, and I find it hard to concentrate on things for any length of time. Yet some days I feel almost normal again and comparatively have loads of energy and little pain; so far, whenever I’ve had a good day, I’ve overdone it, so the next couple of days are hell, but I figure there’s no point wasting a good day just because I know I’ll pay for it later.
I’ve done yoga regularly for the last few years, and whilst my daily practise has slipped recently due to the demands of work and the pain, I do feel better after my weekly classes. One of my goals was to train as a yoga teacher myself one day, and now I’m even more determined to do it if I can.
I’m glad I found this site. Much of the information on the internet seems to be either medical lists of symptoms etc., or ‘How I cured my arthritis with Toe of Newt and Eye of Bat’-type nonsense, or articles about how rheumatoid arthritis is caused by repressed anger. Oh, please!
Ok, rambled on quite enough! Thanks to anyone who took the time to actually read this. X
I enjoyed reading your story K. Good luck with diagnosis and treatment. There are some articles here on tests -they are not always positive especially early on.
If you’re looking for info try the Tags list tool on the top right of the pg.
(From my phone.testing this new texting app -is so easy.)
I could have written this. The next to last line sums up how I am feeling. I was a teacher, loved being a teacher and teaching children to read that was taken away because of this disease and I wonder what for? What is the purpose? What do I do now? Thanks for helping in my education of this disease.
Yes, Dearest Kelly, God does love you and so do I. Your testimony, knowledge and encouragement is always a blessings to all who wage war against this terrible disease. My battle has lasted over 21 years. I once was a hairdresser. Stood on my legs hours at a time, wrapped perms and cut 10 heads of hair a day. Now, I can’t walk around my condo, stand for longer than a couple of minutes, hold my fork let alone a comb/scissors. Some days I say, okay you win, I give up. Only the support of my family, other warriors and you Kelly, give me the will to keep fighting.
May God Bless You Richly ! Enjoy some soup today ~
Thank you so much, Kelly, for expressing just how I feel. It has been a long journey for me to believe that God loves me especially when I developed Rheumatoid and had to stop doing things I so loved to do. My goals are different now and I look each day to see what God whats me to do instead of “my list” to do.
You are such a great inspiration. Thanks again.
Nice summation of a very “not nice” disease. After almost 30 years of RA, and now four other auto immune diseases…funny how they multiply…and six surgeries in 14 years, I have become a pro at making chicken soup LOLA.
Ruthmoid arthritis badges of courage with Mary Ann on face book I would love the camera I will be moving to north Carolina I will be organing a virtual walk for arthritis awareness….203 828 6169…..I am disabled but my mind is not….I wish me luck and all friends who will benefit from this.thank you for taking the time to read this.
I have been reading posts on this site for a while now and as I awaken this morning , I decided to post, I hurt all over and feel lost in the grand scheme of things…I want to break out of this pain and just LIVE again. Reading others thoughts and feelings have helped very much and I just wanted to let someone know. Thank you. Carol