My RA diagnosis

Not quite sure where to start today. My head is a total mess of thoughts that conflict with one another. So this & the upcoming posts will probably be very “free hand” kind of post. You may even wonder, how does all this tie in? When I get everything I need to say, out of my head, some of it make a whole lot of sense, some won't.

As many of you know, I am in the middle of separation proceedings. It has been an ongoing process since June of 2010. First we went to see a mediator, to get a “Memorandum of Understanding” which basically explains everything we’ve agreed on in detail. We met with the mediator until May 2011. Sometimes we saw her once a week, sometimes once a month. It really depended on holidays & everybody’s schedules. We finally got into an agreement about the terms of our separation & I thought, this is great, no lawyers involved! Although the process of mediating our separation was stressful, it wasn’t “take me down to my knees” –kind of stress. Just hitting my head on the wall –kind. It was in some ways a slow death of something that once was beautiful, and something I cherished. Painful, yes.

In the midst of the mediation, October 2010, I had a upper respiratory infection, and my GP (also a pulmonary specialist) prescribed antibiotic named Levaquin. Even though I have an aversion to drugs (my body is just very sensitive, from A to Z), I wanted to feel better & gain my strength back, so I started taking them. I finished the whole set, I can’t remember how many days it was. Probably 7 or 10 days. I don’t know if the length of it really matters, but I can obviously get a list of everything I’ve purchased from my pharmacy (and I will!).

A week after I had finished the antibiotic, I went Christmas shopping wearing my new PADDED, super furry, comfy boots, that fit me so well, no pain, discomfort, nothing. While I was walking around the Outlet Mall, for maybe 4 hours, my feet started hurting. The balls of my feet & heels, to be more exact. I remember thinking, “Oh, I must’ve walked too much today.”, even though I’m a walker at heart & have always loved walking. I never got pain in my feet from walking, never. My friend massaged my feet that evening, and it hurt too much, just to have someone massage them. That was the first day of my pain, and from there on out, my pain only got worse and started affecting my hands & wrists. Getting up in the morning was becoming more painful, stiffness in my feet & generally all over. The pain was in my fingers, wrists, feet and my left shoulder. I went to see my GP multiple times, and they ran different tests, all came back negative. I went to see a neurologist, thinking I have carpal tunnel syndrome and it’s also affecting my wrists and fingers. Then in the beginning of February, 2011, after having done so much research on my own, I demanded to be tested for Rheumatoid Autoimmune Disease (also known as Rheumatoid Arthritis). They were very cooperative and followed my request. The GP’s assistant was actually sympathetic and told me, we’ll run all the tests and we’ll figure this out. That’s when I broke down. Having someone actually hear me, made a big difference.

The following is what I wrote about my test results, on Valentines Day 2011:

“My lab results are in :(( Not good news.

But I still think it's much better than what the doc first started talking about. She said, have you ever been diagnosed with any STD's? And I'm almost screaming in the phone, WHAAAAAAT???? lol, and she says, well, I have to talk to you about this, when can you come back to the office? lol... I said, what are you talking about, STD???? And then she looked at her papers and asked, "this is Mary, right?" hahahahahah... I said, no, this is Sari! She was all apologetic, and embarrassed, but frankly, I was just relieved, lol! I have never had STD's of any kind and I don't intend to, lol! But the news I (Sari, not Mary, haha) got... worry me, and I do need to make an appointment with a specialist :( It will be a lifelong problem, and it will never get better, it can only be slowed down and managed :(( Not looking forward to getting older with this diagnosis. Sad ending for my Valentine’s day, 2011....”

Even I can see, I didn’t have a clue, really. Having some kind of STD would be better than this, I’m convinced. I called my liver specialist, my favorite doctor, to ask for a referral for a rheumatologist. He gave me the same name as my GP’s office, so I called them and got an appointment. I believe it was beginning of March 2011. I was very nervous about my appointment.

This is what I wrote the day before my appointment:

“My rheumatologist appointment is tomorrow, finally. I've had to wait for 3 weeks to be seen, and it's been a long time, I tell ya... but I'd rather wait to be seen by a great doctor, and suffer while waiting, than be seen quickly by somebody who asks me "can you come tomorrow?" lol :) I really want to get this right, and be treated/informed by the best.

I'm also going to get a consultation with a Chinese Herbalist aka Dr. Zhang, and hope I can afford the herb treatment plan from him. He comes highly recommended, as he is a Western Doctor AND a Chinese Med. Doctor and I have a close friend who knows the magic he's been able to make happen.

I've had to stop doing Yoga until I see my doctor, as well. The pain I have every day needs to be managed somehow and the inflammation reduced significantly, before I can continue. And the Rheumatoid Arthritis requires a specific kind of Yoga, too. I really can't wait to start feeling better... and start enjoying mornings again & be able to continue my daily activities with more energy and less stiffness & pain... to be continued... “

I still didn’t have a clue. I thought there’s some magical drug that will give me my life back. I also thought my rheumatologist is great, she just had to be, since she came so highly recommended by people I trusted. Oh boy, was I wrong.

This is what I wrote after my appointment:

“ I'm all out of words & confused with all this medical stuff. I know so much, and not enough. So I keep waiting for the answers... for now, I've been given muscle relaxants to improve my sleep and perhaps give my body more restorative kind of sleep. Which is needed for the body to reset for a new day, and for the ability to tackle everyday life challenges... not to mention the much more challenging stuff, like divorce. My rheumatologist thinks, that I'm not able to reach the last 2 stages of sleep every night, for a long time now. And that's where the reset happens. So the muscle relaxants would put me to that stage faster and with the improved quality of sleep, my body might start healing itself.

She has not given me a diagnosis yet, since it's a process of elimination... I'm thinking she's leaning towards Fibromyalgia and maybe some other stuff in addition to that. Fibromyalgia because my inflamed joints didn't feel warm to her touch. (I know they had been and were at the time of the appointment). I had made the mistake of taking ibuprofen before my appointment, to be able to get there, eh? Life is a mystery, no doubt... To be continued... “

And finally the diagnosis:

“ Official diagnosis: Rheumatoid Arthritis. At 34 (4 days short of 35 pfft). Unreal. *insert a face with tears* “

Part 2. coming tomorrow, I hope. With RA, it's one day at a time, and so is with this blog.

The Warrior in me

One bucket of red swollen joints with a constant sprinkle of pain & stiffness

Originally this blog was going to be about me going through separation and finding a safe little place for me to share my thoughts. Maybe rant and rave a little. Let out some steam. However, since I first started this back in June 2010, my life has turned upside down by a devastating diagnosis of Rheumatoid Arthritis (or the new, more descriptive term ~ Rheumatoid Autoimmune Disease). Since my diagnosis (just a few days before my 35th birthday), I've often heard people say, I won't allow myself to be defined by this disease. However for me, it is currently defining me. I'm trying make friends with RA. But we don't get along so well, at least not yet. As a person, who thrives on familiarity and the feeling of being somewhat in control, this diagnosis has shook me to my core & does so every day. It is unpredictable, disabling, controlling, puts me in my place when I've done a little too much, or not enough ~ kind of like an evil parent. As I get to know my new Evil Parent better, maybe we can agree on terms, where we'd be siblings or friends, instead. I'm hoping to find balance and learn to manage my RA better.

Speaking of balance and managing... Last November, I felt so alone, depressed & isolated with my disease, that I was googling and researching RA, like a mad woman. I was trying to figure out the best way to control the inflammation & eliminate the pain. But what was hurting me most at the time, was that nobody understood & that my support network was non-existent. I stumbled upon a website/blog named www.rawarrior.com and I felt I had fallen into a "Heaven for RA information"... instead of feeling lost, I got lost in her blog! In a good way! Everywhere I looked, every blog post I read, I gained more hope. My internal monologue was along the lines of "Yes, yes, yes, me tooooo!" Now I was not big on Twitter and I could never really get into it, but after I clicked Kelly's (aka Rawarrior) Twitter link, I dived into a world of incredible RA community! There are people like me everywhere, people who are in much more advanced stage of this evil disease. Some days it's encouraging, some days the gloomy thoughts take over and the future looks bleak. But I'm much more capable dealing with the reality of RA, when I know my support network is just a click away. There's no cure for RA at the moment, so no other word describes the daily battle quite like WARRIOR. Thank you Kelly Young, who I often refer to as my savior.

- I have so much more to write about, but instead of writing a book as my first blog post on this, I will write shorter ones & also give my swollen hands a break :)