Tag Archives: rheumatoid arthritis

#RABlog Week Day 3 – How my condition affects me

The third prompt for #RABlog Week is “Explain your RA”. Technically I do not have RA, I have another joint condition caused by my immune system attacking my joints that hasn’t yet been identified. I can’t explain what exactly is going on because I don’t know that myself but I can explain to you how my condition affects me, and how it makes me feel.

When I was diagnosed back in November I wasn’t ready for a diagnosis. I had gone for 7 and a half years with everyone telling me that they believed my pain but no one could tell me what was going on. I remember asking my Rheumatologist in despiration if she has ANY idea what was going on… her answer was “It might be autoimmune, it might not be. I do not know what is going on with you”. That was what I was told when I was 14. I wanted to cry, I was so frustrated at my body, at being sore all the time. I found it hard to explain what was going on to people because I didn’t have a diagnosis so I felt as if I was a fraud. Other people would go to the physiotherapist because of a sports injury and they knew how to treat it, I would go and they would say that they would try a treatment… but when it didn’t work I would get passed to a different physiotherapist. I saw 6 different physiotherapists in the space of 5 years. That is a lot of physiotherapy, and it is a lot of specialists who couldn’t help me, even though they truly believed I was telling the truth. They would all look at me with really sad eyes and tell me that they were sorry they couldn’t help, and that I should see my rheumatologist again. And every time that happened, any hope that I had built up was gone again and I felt really alone.

I felt that people would stop believing me because I didn’t have an answer for what was going on, and apparently no one else did either. So when my Rheumatologist turned around to me and said “I think you have an autoimmune condition, I want to start on you Hydroxychloroquine” I didn’t know whether to cry with happiness because I finally had an answer or to cry because I had found out that what I was hoping wasn’t true, was true.

As I said before, we haven’t quite narrowed down what condition I have. There is speculation that I could have Lupus or Mixed Connective Tissue Disease… or I could have Psoriatic Arthritis or Seronegative RA. We haven’t worked it out yet. I personally believe that I could have something similar to Psoriatic Arthritis or Seronegative RA due to my negative test results and the inflammation in my ligaments and tendons… and more recently, the whole finger that swelled up for 5/6 days for no reason [AKA dactylitis, although I need to get that confirmed by my rheumatologist]. I am lucky that I am studying physiotherapy so my lecturers understand what sort of problems I may have at uni but the problem with not having a name for my condition means that I can’t tell them straight out what I have and then have to explain the whole “I’ve been diagnosed but they haven’t said what it is yet… because I am a mystery to my rheumatologist”.

Of course all that emotional stuff stems from how my condition affects me physically, and also partly on how other people treat me because of my condition. If you look at me you cannot tell that I have a joint condition. If you had a line up and you had to choose someone who you thought was chronically ill, I very much doubt you would choose me. I look healthy… and to some extent I class myself as healthy but if you read my medical file you would probably picture someone who is unhealthy. I want to quote some things that my rheumatologist has written about our meeting and I want you to try to think about what a person with these ailments would look like.

“Lumbar sacral spine movements were grossly restricted”

“… restriction of plantar flexion subtalar movements and mid foot movements” [AKA restricted movements in my feet and ankles]

Morning stiffness remains a significant problem and can last between 1 and 3 hours”

“…feels extremely tired”

“… grossly restricted movements in neck and back”

If I saw a description of this written down I would expect to see someone who probably wouldn’t be very active, and probably wouldn’t be able to move very well because of all the stiffness. However, that is not the case. I am active, I can run, I can jump… Some of the time that is. And this is the thing with chronic invisible illnesses of an autoimmune nature, sometimes you can feel really good and the next day, or even the next hour, you can feel absolutely horrendous.

There have been times that I have used a disabled toilet because of the fear that I wouldn’t be able to get up off of a normal toilet without handrails. There have been times where I have sat in the disabled seat on buses because my joints couldn’t cope with me standing any longer. There have been times where I have been physically sick from pain. There are days where I can’t write, or when I find it hard to type. What I want people to learn from this is that living with an illness is very unpredictable and you have little control over which days you feel great and which days you don’t. I deal with pain, swelling, stiffness and inflammation every single day and yet some days I can still be “normal” whatever normal is. The point is that you cannot see my suffering so just because I don’t tell you that I am sore doesn’t mean that I am pain-free. Please remember that your sister, brother, parent, friend, relative, colleague… who ever you know with RA/Autoimmine arthritis, will most likely be sore every day and have symptoms every day. Just because you can’t see them, doesn’t mean that they aren’t having problems. If they are doing things slightly differently to normal then this is probably them compensating for said symptoms in a functional way… they might even ask you for help. Don’t make a big deal of it, just help them. Don’t treat them any different to normal, they are the same person they have always been. They do not need to feel more isolated by their illness because you feel the need to make a big song and dance about what they can/can’t do or what they may/may not need help with.

A busy, busy week, and some more answers!

I’ve had a crazily busy week this past week with 3 different appointments. On Monday I had to see my GP. I had rang him up 3 weeks ago [it takes 3 weeks to get an appointment with my GP]… I rang him when I was in the middle of a flare, and I was hoping that he would be able to help me out with some pred. However, he was incredibly rude and said that he was unwilling to do anything for me as I have a consultant. He also said that I was going to become disabled because I have an autoimmue disease… I was completely shocked, not only has this doctor just met me 2 minutes ago, and clearly had no idea how to treat my condition, he automatically assumed that I will become disabled despite not being a specialist and then he was unprofessional enough to tell me that I will, not that I might, but that I will become disabled. When he saw the look on my face he added that I’ll only become disabled if my condition doesn’t magically disappear… Anyone with an autoimmune disease will know that they hardly ever disappear, although we know that remissions can happen. My GP, although being brusk and rude, did send an urgent appointment request through to my Rheumy about my joints in the hopes that I could see her earlier than March. And he gave me quite a lot of Naproxen and paracetamol to tide me over the time till I got to see my rheumatologist, and he made sure they were on my repeats. I also found out that my Rheumatologist has diagnosed me with “Autoimmune disease (doesn’t quite fit criteria for Lupus)” so it looks as if she is thinking along the lupus route for my diagnosis… I’m not too sure how I feel about that.

My second appointment was on Wednesday and was with a physiotherapist. We discovered that I don’t have bursitis but I have inflammation of my piriformis muscle. It’s unclear whether I’ve ever had bursitis and if all my symptoms were a result of my piriformis, or whether the intramuscular steroid injection I had back in November has helped. Actually this past week I have been feeling really good, I have had about an hour and a it of morning stiffness but I actually feel quite good so maybe that steroid injection has helped. The physio asked me what I wanted her to do so I have asked for a load of stretches that will hopefully help with all my stiffness, and I am happy with that outcome… She said she will leave her appointment schedule free for me for 8 weeks, meaning that any time in the next 8 weeks that I feel I need an appointment I can ring and she will see me, or if I don’t need to see her then I don’t need to ring which works fine for me.

On Wednesday my Rheumatologist’s office phoned me saying they had got the appointment letter from my GP [that I had seen on Monday] and they asked me to come in to see them on Friday [AKA today]… Talk about efficiency right?! And that leads on to today and today’s Rheumy appointment. My appointment was at 11.30, and I was actually feeling pretty good, which is good but then when you are seeing a Rheumy for a flare which has now passed, it’s not the best timing. I got to see a junior doctor first as my actually rheumatologist is on holiday till January. He did an extremely thorough examination including an examination of my chest. He said that my joints looked good, which I already knew, and I explained that when I had phoned my GP 3 weeks ago, I was flaring. He did find a little bit of fluid in my ankle which surprised me and he found that my heel pain was actually caused by achilles tendonitis. He said that he thought that I might benefit from a steroid injection in my ankle but he wanted the registrar to see be first. I had to sit back out in the waiting room for about 40 minutes, as the registrar was held up on a ward but when I finally did see her it was a really good and informative appointment. She greeted my mum and I and asked my how my SLE (Systemic Lupus Erythematosus, AKA Lupus) at which point my mum freaked out because we both are well aware of what lupus can do to a person, but when we explained that SLE can affect each person differently, Mum seemed to calm down a bit. I explained for a second time that I was mid-flare 3 weeks ago but I was doing very well now except from heel pain. She agreed that I have a little bit of fluid in my ankle but not that much, and I do achilles tendonitis but because I have flat feet she wasn’t sure whether my achilles tendonitis is a mechanical problem or an inflammatory problem… so she has decided to hold off on the steroid injection for now, and she has referred me to podiatry so they can give me more insoles… However, I have already been waring insoles for years so I am not entirely convinced that this tendonitis is mechanical, especially because it came on at the same time my flare started. I am hoping, with crossed fingers, that it is mechanical as we will be able to sort it out easier.

We also discussed my diagnosis, and we were trying to identify exactly what might be going on. She explained that arthritis is a spectrum with a lot of symptoms that overlap into more than one condition but that they try and categorise symptoms into one condition, when perhaps they shouldn’t. She said to me that I don’t quite fit the criteria for lupus, which I already knew from Monday, but that my achilles tendonitis, if it is inflammatory, actually points to Psoriatic Arthritis, and as I already have a family member with Psoriatic arthritis this makes Psoriatic Arthritis a more likely diagnosis… But then the joint distribution of the joints affected in my hands suggest Rheumatoid arthritis but my Rheuamtoid factor and anti-CCP are negative so it’s more likely that I have sero-negative rheumatoid arthritis… So in one appointment I was told that my autoimmune condition has characteristics of Lupus, Psoriatic Arthritis, and Rheumatoid Arthritis, and when you throw in Raynauds [another autoimmune condition I was diagnosed with in November] that can point to Lupus and Rheumatoid Arthritis, which means that I might have a combination of the two… AKA Mixed Connective Tissue disease… So that is a fourth Autoimmune disease that was discussed… Basically we don’t now whats going on, but we do know that I have something autoimmune going on, and we do know that the DMARD I am on, Hydroxycholorquine [Plaquenil], can treat Rheumatoid Arthritis, Lupus and Mixed connective tissue disease so it isn’t too important that we know what the condition is, as long as we can treat it.

I also got my ESR and CRP retested… my bloods last month showed my ESR to be 7 which is well within normal range, however it has increased from 2 which is where it was in May therefore suggesting that I do have a little bit more active inflammation but not an awful lot as some people end up with massively high, but this is subjective to each individual so it’s hard to compare peoples results. I also got baseline x-rays on my hands, feet and ankles which totalled 9 x-rays although I ended up having to have 10 because one didn’t turn out well, but that should do me for a year or so… Overall I have had a really busy week, and I’m really happy with how my rheumatology appointment went, even if it did take 2 hours [from going in till finishing with the x-rays].

Some progress, sort of… and a plan of action

I’ve been officially diagnosed for 3 weeks now and I think I have finally got over the initial shock. I went into that appointment expecting to be told to come back in 6 months because they didn’t know what was going on like usual, but instead I came out with 2 diagnoses of autoimmune conditions, a script for a DMARD [Disease-Modifying Anti-Rheumatic Drug] and an intramuscular steroid injection… That’s a lot to get your head around when you don’t think anything is going to happen.

I just wanted to up date you all on what has been going on with me since then. So first of all, I have noticed my Raynaud’s symptoms are popping up more than they used to… I.e. my hands and feet are constantly cold, and they change colour to this awful shade of white, they feel numb, and then when blood starts to return to them they go bright red and burn… pretty typical Raynaud’s symptoms there. I’m not sure whether I am just noticing these symptoms more because I have a diagnosis now and I am paying closer attention, or if the cold weather is causing more issues? I presume it’s a bit of both, however I have noticed that if I pick up a cold drink, or something out the fridge or freezer, my Raynaud’s symptoms flare, and that never used to happen… I virtually always wear gloves when I am outside now but it’s the activities in normal life that are causing the issue now, not the weather… I am definitely going to bring this up with my Rheumy in March, although I fear there isn’t an awful lot she can do other than offer advice. I have now started pouring my drinks into mugs with handles so my hands aren’t in contact with the cold for that long, and my Rheumy suggested wearing rubber gloves to get things out of the freezer so I will probably start doing that as soon as I get to the shop [life has been pretty hectic these last few weeks].

As for my joints… well they aren’t doing that great. I think I can officially say that the intramuscular steroid injection hasn’t helped, which is a shame but at least I know that it doesn’t help me now so I can [hopefully] avoid being jabbed in the arse again! I’m still experiencing about 2 hours of morning stiffness every day, my knees are swelling, my ankles are swelling, my hip is aching so bad, my PIPs [Proximal Interphalangeal joints… the middle knuckles] are sore, and puffy and turn pink so I think it’s reasonable to say that the steroid hasn’t helped me that much… In fact I am feeling so rough that I rang my GP and I have made an appointment for the 15th to hopefully sort out some symptom relief for over the christmas holidays until I can see my Rheumy, but I am not sure if I am going to manage through this week so I am going to ring my Rheumatologist’s advice line tomorrow and leave a message to see if they have any ideas on what to do. I am at the point where I would take a burst of pred, and I actually think I need one but I had a steroid injected into my butt just 3 weeks ago so I don’t know if you can take oral steroids so close to having an IM injection? I presume so because my old GP was happy to offer me 2 bursts of pred within a month of each other, but that will be something to bring up with my GP and Rheumy. I have also noticed a few new symptoms that have been gradually increasing in severity. The first is that my heels hurt, especially first thing in the morning… I can’t decide if it is actually my achilles tendon that is sore or if it is the attachment of my achilles tendon [AKA enthesitis] or if it’s both, but I am going to try and investigate a bit further into that. And the other is that my SI joints have been hurting, this has happened in the past when I have flared so it does kind of make sense that they are hurting now since I believe that I am flaring but it is really painful this time, more so than last time and it is really stressing me out because I can’t find a comfortable position… but such is life.

In the past I probably would have just dealt with my symptoms, and I am in two minds whether I am making this a bigger deal than it actually is but I am currently on my first physiotherapy placement at my local hospital which involves being on my feet for about 8 hours solidly a day [I usually get between 15 and 30 mins sit down time in that 8 hours] and I am actually really struggling, and some of my seniors have noticed it too and made the odd comment… I was taking part in a Pulmonary Rehab class to learn about what patient’s do in it, and it was obvious to everyone that my joints were far stiffer than everyone else’s despite all the patients being at least 5 decades older than me… slightly embarrassing as you can imagine.

This past week I have been really pushing myself on the exercise front. I have found a fab little gym that is outside and is on the riverside near where I live, and it has a lovely view of all the bridges, it’s really beautiful actually and is one of my favourite places in the world right now… I’ve managed to go to the gym about 3 times last week, and I have been again tonight. I find it really good to give my joints a good work out and it is helping with my joint stiffness, especially because I tend to go after I have been sitting down in a chair for a couple of hours doing work but it hasn’t really helped much with the pain yet… I also invested in a foam roller which hurts like hell but I can really feel it helping with any muscle tightness that I have. I am going to try and keep up this intensity of exercise for as long as I can, and I am going to try and get to the swimming pool at some point this week too [the swimming pool has really odd opening times which makes it difficult for me to go] which will hopefully help with the stiffness. I also see my new Physio on the 17th so I am hoping that she can help me out on reducing the stiffness.

All in all I think I am coping quite well with everything, the side effects from Plaquenil [mainly heartburn which meant I could only have one meal a day for 2 weeks] have subsided significantly, and I am still optimistic that it will start working… It can take up to 3 months and I have only been on it for 3 weeks so I’m not surprised I haven’t noticed any improvement yet… and if worst comes to the worst and Plaquenil isn’t the medication for me, well there are plenty others that I can try, of course I would rather this one work but I’m not going to get too discouraged if it doesn’t. This is the start of my journey into finding the treatment regime that works for me, and I am well aware from my experience with asthma, and from hearing about other people’s journeys that I might have a long way to go till we find the right med/combo of meds for me, but actually being started on meds is a move in the right direction!

A breakthrough… Finally

Today I finally made progress with whatever is going on with my joints. I got the letters that my rheumatologist has sent to my GP, only 3 of which I actually received.

The letters said that she was looking into Seronegative Arthritis in November 2010 because of “gross restriction” in my lumbar spine. She also ordered my HLA-B27 but unfortunately the result is not in any of the letters so I am going to assume it was negative, although I shall ask my Rheumy about this in May. However, my Rheumy did find that my ANA is positive, but that this may not be significant.

Although my Rheumatologist did say that she expected me to be extremely hypermobile but when she examined me she found the opposite, and in fact I am incredibly stiff. She found restriction in all of my joints including the joints in my mid foot which may have been the start of when the bones in my foot fused. But all that was back in 2010…

In 2012 my Rheumy found “gross restriction” in my neck, which was no surprise since I was in the middle of a flare and could hardly turn my head. And as it turned out my ANA was still positive so it wasn’t a fluke. However, this is slightly confusing because I read on the computer (okay, I sneaked a look at the computer when my doctor went out of the room) that my IgM was positive… But none of this is in the reports.

Another thing that is missing from my rheumatologist is my ESR and CRP results so I have no idea what my inflammatory levels are, I don’t know whether they are usually low and are at the higher end of normal when I flare. However, I have since found that you can actually request a copy of the blood tests to be sent to you, so I am definitely going to do this when I see my Rheumy.

The results of my scans are written briefly, which I’m not too happy about either. There are no mention of comments from the radiologists… And surely, since my foot has fused, something would have shown on my Nuclear Bone Scan? But nothing was mentioned…

The last letter was from my Physio to my Rheumy, asking her to see me. It talked about the pictures, I had shown my physio, saying that it showed that my joints were red and inflamed and it also said that my joints were tender and movement was restricted.

There were more than 3 letters but they all pretty much said the same thing, although one did suggest that my Rheumy was looking more into the possibility of Lupus rather than inflammatory arthritis. However the letter after that one didn’t have any mention of lupus so I guess they discounted that?

On each letter there is a section for diagnosis, and mine says Arthralgia (joint pain), morning stiffness and ANF positivity (which I presume means a positive ANA. But I’m not entirely sure what the “F” stands for, maybe Factor?).

I thought that these letters would help shed some light things, but in actual fact if has just confused me more. It’s pretty obvious that my Rheumatologist has no idea what is going on, and neither do I. I’m beginning to think that my Rheumatologist was right about me being a medical mystery. But I really hope that my new symptoms, namely swelling and ligament involvement, will help with the diagnosis process. None of the letters mention anything about costochondritis or bursitis, which I have definitely mentioned to my Rheumy before, so that is definitely also going to be mentioned in my next appointment.

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Flutiform, glasses and joints

After spending an hour total in two pharmacies yesterday to no avail, I have finally got Flutiform.

The two pharmacies closest to my house don’t stock Flutiform but thankfully a pharmacy close to my college do stock Flutiform so as soon as I got to college today, I ran down and got it before anyone else could nab it! I was quite surprised, at how massive the box it came in. I didn’t know how big the inhaler was so I presumed that it must have been bigger than all of my other inhalers but no, it’s the smaller than ventolin! In fact it is almost the same size as serevent.

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Don’t you think that this box is a ludicrous size for the inhaler?!

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I must admit that it is a really snazzy inhaler, my friend even commented about how all inhalers should look like Flutiform does!

From the title, you know I’m not just blogging about Flutiform. Tomorrow I am getting my eyes tested because everything further than 5 metres away is blurry in one eye, but the other eye is absolutely fine. It wasn’t too long ago that I got my eyes tested last because it was taking me a while to focus with that same eye I am having trouble in, and now it just doesn’t focus at all. Although I am hoping that I won’t need glasses.

I’m also struggling quite a lot with my joints today. My morning stiffness has been increasing over the last few days and my bursitis feels like it is burning a hole in my trousers because it is that hot. My ligaments are joining in the fun too, although they aren’t hot to touch, just very sore and slightly swollen. I was supposed to get a call from my physio today to explain to me what is going on with hydro but that hasn’t happened, so I will have to call again on Monday to see what is going on.

I was wondering if you have any autoimmune illnesses in your family. I have just been diagnosed with Rheumatoid Arthritis but I am the only person in my family who has an autoimmune condition ~ Alice

Hi Alice, sorry to hear about your recent diagnosis and I hope you can get everything under control really quickly!

I have a really strong family history of autoimmune conditions including Lupus, both seropositive and seronegative Rheumatoid Arthritis, Psoriasis and Raynauds. But just because no one in your family has an autoimmune condition doesn’t mean you can’t develop one, just like having a strong history of autoimmune diseases doesn’t mean you are going to get one too.

Guest post: How I became a JA advocate – Christine Schwab

[Note: I would like to welcome the one and only Christine Schwab to MyLungsMyLife. For those who haven’t heard of Christine, she is a woman who is looking out for all the JA kids out there, helping to raise to profile of the disease, sharing the experiences JA kids have both the good and the bad. Christine attended the Juvenile Arthritis Conference and met a whole load of the young people she has been advocating for and I think would have been quite amazing for all involved. Christine, herself, has RA and knows the difficulties people with Autoimmune Arthritis face and this makes her awareness campaign even closer to her heart. This post is Christine’s journey into JA advocacy!]

I was diagnosed with RA as a young woman in her prime. My television career as a fashion/style reporter was growing I was appearing on Oprah, Entertainment Tonight, The Today Show and Live with Regis and Kathie Lee and then Kelly as a contributor. I had just married my dream man and life was perfect. Until one September day when I was working on a week of makeovers for Live in New York and I started having pain in my feet. I thought I had just overdone and purchased a pair of sneakers for relief. But no relief came. The next day I had a foot massage. No relief. By the end of the week I was in severe pain that moved up my legs. When I got back home (I lived in LA but commuted to NY every month for work) I went to an orthopedic, thinking I had damaged something in my feet. The X-rays were normal, the Orthopedic said, shaking his head in confusion. From there I went to two more doctors without resolution. “I don’t know what is wrong but I think you should see a Rheumatologist,” one doctor said. I didn’t even know what a Rheumatologist was but when I went they took a lot of blood, pinched my toes and feet until they pulsated and said, “Nothing is showing up in your blood.” By this time I was so frustrated because the pain was getting worse. “There is a young, cutting edge Rheumatologist at UCLA that I think you should see,” the last doctor suggested.

My husband and I made the trip to UCLA and met yet another doctor. More squeezing of my joints, more blood work and lots of waiting. “Your blood work is not showing anything Christine, but I am going to make an educated guess and say you have Rheumatoid Arthritis.” All I heard was the word “arthritis,” visions of old crippled people filled my head. Years of watching Arthritis telethons on TV with my mom frightened me. And the tears flowed. My husband and the doctor were elated, a diagnosis had been made. “It’s not uncommon for the markers of RA not to show up in blood work in the early stages,” the doctor said, oblivious to my tears. He put me on an anti-inflammatory and said he wanted to see me in three weeks. I left devastated. How could I be a fashion reporter on TV with arthritis? My husband left pleased that it was only RA. Neither of us understood the devastation of this disease, but we were soon to find out.

My seven-year RA journey was all over the map. After a few months at UCLA my blood work confirmed the RA diagnosis. Medication after medication was prescribed. The ones that worked on the inflammation didn’t agree with my system. It was the worst roller coaster ride of my life. The only place I found relief was in bed and as I pulled the sheets over my aching body the touch of the soft cotton fabric hurt.
I continued my television work with the help of determination, medications and my doctors’ hope. “We just have to keep you going Christine, there are some new, exciting meds in the research pipeline,” he said as he wrote yet another prescription.
And then, seven years later the first biologic became available at UCLA and I was placed in the research program. I was elated. A cure at last. Hope made me oblivious to all the side effects, the notices about the patients who developed cancer, the ones who died.

The nine months in the research program without any medications other than the newly tested drug was even more of a roller coaster ride. At first I felt great, having stopped the seven years of toxic medications. Then RA roared it’s ugly head again and my hands started aching and showing damage. If I quit I wouldn’t get the medication for years and so I stayed, sure that I was on the half dosage and once I got the full dosage I would be home free.
As it turned out, when the program ended and the results were released I had been on placebo the entire time. Proves what attitude can do. The full dosage awaited me because I didn’t quit as many other participants did. Two weeks after my first injection of the actual medication I went into joint pain remission. I had my life back. All the hope my doctor promised materialized.

​For twenty years I kept my RA secret. Television and arthritis just didn’t fit my job description. Fashion and arthritis just didn’t work. I knew if word got out I would lose my job. When I took high dosages of steroids in order to work, my face would swell and I would gain weight. But then my fashion expertise came in handy. I altered my hairstyle and dress and people barely noticed. Except when a producer of Live said, “Christine, are you on steroids?” “Why would you say that?” I replied. “Because my sister took steroids and her face looked puffy like yours,” he said. “All the plane travel has taken its toil and I have a lung infection and yes, I am taking steroids,” I said. It satisfied his inquiry and I was able to keep my secret and my job.

​I had published two books on fashion and was thinking about my next book. What would I write? I jotted down many ideas but nothing seemed important until I realized the book I wanted to write was about arthritis. I had my life back. The new medicines continued to come out of the research pipeline. I needed to share the hope, the breakthroughs, and the journey.

The story poured out of me as fast as I could type. Take Me Home From The Oscars; Arthritis, Fashion, Television and Me was published in 2012. Somewhere along the publicity journey I connected with the Arthritis Foundation and learned that kids, teenagers, and young adults got arthritis. Not the Osteo arthritis of athletes or the normal age related wear and tear on joints, but the autoimmune disease that hospitalized me several times with life threatening complications. As I learned more about the kids and how they were taking the same toxic, powerful medications that I had taken, my focus changed. Adults can understand the disease. Kids? How did they understand? How did parents deal with such an uncertain disease in their children?
​The more I heard about Juvenile Arthritis, the more my heart broke. A shortage of Pediatric Rheumatologist, mis-diagnosis from regular doctors, bullying in school, teachers calling JA kids “lazy” and “spoiled” because they couldn’t’ participate in school activities. Doctors telling moms their toddlers were “slow and would walk when they wanted.”

​It wasn’t a conscious decision to focus on JA, it just evolved organically, as if it was meant to be. Facebook post from worried, stressed and uninformed moms who read my book contacted me with question after question. I understood, I had taken every medication and combination of medication they were concerned about. I could answer them in layman’s language. Been there, done that. I could share what I learned about being aggressive with treatments, talking with doctors and managing health care. Soon I started a page for JA Kids. “What should I name it?” I asked a writer friend. “Keep it simple, ‘Christine’s Kids’,” she replied. “Keep it personal and honest.”
​A year and half flew by and Christine’s kids grew and grew. Often having 20,000 people viewing the page and reading the posts. I spoke at events about JA and the more I spoke the more I realized how few people even know, just like I didn’t know, that kids get this disease. The more I found out, the more determined I became to make a difference, give these kids a voice, create awareness among the unaware.

​My husband commented one evening while we were watching TV, or rather he was watching and I was on my iPad, “Christine, you are on that thing ALL the time,” he said. I walked over to him and gave him my iPad, open to the Christine’s Kids page. “Read some of the stories, He scrolled and read for about 20 minutes before he looked up and said, “This is the most important work you have ever done.”
​Am I consumed? I am.
​Am I passionate? I talk to everyone who will listen.
​I feel as if these kids and their families are part of mine. I feel their pain, their frustrations, and their fears.
​These kids deserve a voice. I am honored to be one of those voices. My husband no longer comments about me slowing down. He knows it’s useless. He understands. I can’t slow down, I have 20 years of silence to make up for.

[I would like to thank Christine once again for writing this post on how she got into JA awareness, and with Christine’s help, I hope that JA will not stay a secrete conditions that only people directly affected by JA and their family and friends know about.
Why don’t you follow Christine’s Facebook page Christine’s Kids and I would definitely recommend checking out her site! For anyone who would like to buy Christine’s book, just follow the Amazon link on her website.]