Dr. New Rheumatologist

I’m not in the mood to write at all – the weather is so amazing! But many of you have been on the emotional roller coaster with me trying to find a new rheumatologist & supported me with my anxieties, so you deserve this!

When I first contacted this rheumatology office, my intention was to schedule an appointment with a lady rheumatologist. There’s 6 or 7 different rheumatologists in that office. The receptionist told me the next available appointment for a new patient is in the end of May, and it was February when I called! I thought that was far too long to wait, considering how long I had waited already plus how much pain I was in. So I asked if any other rheumatologist in their office could see me earlier. I was desperate, but hesitant, since who wants the doctor that is “not as popular”?! So I got my April 16^th appointment & that was yesterday.

I made the mistake of procrastinating getting all my documents/records together and then scrambling to get it done on the day of the appointment. I would’ve saved myself a lot of worry and anxiety, if I had done it before! I got myself so worked up, I couldn’t speak or think properly. I was also very anxious about the new doctor – is he going to live up to my expectations and hopes? Will he be cold & distant? I was tired and weary, looking for a rheumatologist. I made a list of “must have’s” in my previous post, based on my experience with Dr. Pearls. To save you time, I’m posting it again, with additions of + symbol if it fits to my new doctor.

• Knows what they're doing +
• Has waiting time less than 30 mins
• Speaks fluent English +
• Is a woman
• Listens to me +
• Believes me +
• Won't tell me "I've been doing this for 30 years" +
• Has been a rheumatologist for 10-15 years max 
• Understands my complicated medical history +
• Takes me seriously! +

7 out of 10 isn’t bad! And quite honestly, knowing what I know now – I don’t mind waiting for the doctor, if I know he will do a thorough exam when it’s my turn! The fact that he’s a man and he’s been a rheumatologist for over 20 years, I just can’t hold them against him ;) The bottom line is, he listened, asked questions, was thorough, didn’t assume anything, smiled, very down to earth, easily approachable, didn’t feel like he was in any hurry to finish, he spent more than an hour with me! He lingered, talked some more while the nurse took blood. We talked about different treatment options & I impressed him with my knowledge ;) He had his colleague look at my legs, that are covered in “something” (can’t really tell you what it is, since I don’t know). I was in rheumatologist heaven! If I had never had a bad experience with Dr. Pearls, I might not have known to appreciate him.

I told him my ex-rheum diagnosed me with RA, but the new doctor is running tests to exclude other possible diagnosis. I’m getting a skin biopsy done for my legs tomorrow. He wants to be sure it’s not Vasculitis. I’m also going to get new x-rays, to compare to the ones from year ago. He did confirm I have a large rheumatoid nodule forming in my elbow, probably both.

Now about treatment options - since I had a drug induced liver failure back in 2007, we need to be extra cautious with how to treat my RA. While all my tests are pending, I was given a cortisone injection. Something called Depo Medrol. It was not injected directly to the joint(s), but to a muscle at my hip. Apparently it’s going to help with inflammation & reduce pain, just like the pill form of steroid I’m taking. The shot itself stung big time, but I didn’t feel any different otherwise. This morning however… I was in more pain than I have been in a long while & my joints were super stiff! I couldn’t pull the orange juice out of the fridge, I couldn’t push the button to put laundry detergent into the cup! Everything was “can you help me?”, “I can’t do this”, very frustrating, having been a bit better since starting Prednisone. So I hope this is just a temporary setback & the pain will subside once the cortisone really kicks in! I have heard it could take 24-48 hours for the steroid to start doing its magic, and that things will get worse at first… oh yay ;) If I know the relief is coming, I don’t have any trouble waiting!

We both agree on trying a biologic treatment. He mentioned Enbrel (which is where my mind was at as it is) & Orencia. We even talked about Methotrexate, but given my history, it’s the final treatment I will ever try. I cringed when he mentioned Orencia, I remembered my Twitter friends’ poor response to it. He did say, there’s 2 kinds of Orencia (I didn’t know) & I will look into it. But after we have a confirmed diagnosis, we’ll begin with Enbrel and cross our fingers :) Thanks to Barb's video on how to inject the Enbrel shot, I'm not too afraid of it!

I feel a sense of empowerment with how informed I’ve become through the RA Twitter community. I feel blessed & lucky to have made RA friends all over the world & to have found a new rheumatologist. Both have given me perspective, I’ve learned a lot. I learned you don’t have to be a woman to be a heaven sent rheumatologist! I need to name my new doctor, any ideas? :)

My lil' cutie March 2012 :)

P.s. I have to get my lil one to the dermatologist to get a biopsy asap. He’s been complaining of back pain for a while now, plus his knees/legs hurt occasionally. They may hurt more than that, but he’s not a complainer, since he hates going to the doctor. He has chronic eczema, but he also has other rashes, that seem to be relentless. The pains could also be just growing pains, but I need to get him checked. To be continued…

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.