Wednesday, April 18, 2012

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 16th 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…

Monday, April 2, 2012


If someone loves you with everything they have, no matter how flawed you are. No matter how damaged, no matter how depressing your presence, no matter how much baggage you carry around, no matter how you haven’t been able to hold your end of the bargain… loves you so unconditionally… no matter how poorly you treat them, because of your own pain… emotional and physical… no matter how you think you two aren’t a good match, that he doesn’t have enough passion for life, not able to have intelligent conversation, doesn’t challenge you.. not to mention, you two don’t have chemistry, your husband has no backbone, can’t stand up for you, lets other people verbally assault you, your parenting styles are very different, you can’t stand the idea of him touching you… but if someone would do anything, absolutely anything for you… are you selfish for wanting something more, to find your voice, to finally blossom into your own, that you’ve been afraid to do all your life?
Week ago or so, I had a dream about fog, driving into very thick dense fog. Here’s the dream interpretation:

To dream that you are going through a thick fog symbolizes confusion, troubles, scandal, uncertainty and worries. You may not be seeing things the way they really are. You may have lost your sense of direction in life. Alternatively, a fog represents mystery, secrecy and protection.

There was another dream this morning (and there have been others in the recent weeks, just forgotten them)… my lil one was wearing a backpack, he wandered away, I saw him walking in the city, crossing a busy street, I’m yelling his name & next thing I know, I can’t find him… I lost him in the city… the lil 7 year old boy alone in the big city… at some point I was running down a hill looking for him, slipped,  rolled down… woke up…

Some of you know, I’m in the final inches of my separation agreement becoming a reality. We’ve been forced to live together throughout the process. It’s been very draining, painful & … well I don’t even have words strong enough to describe how it’s been. Some, in fact, many things have happened, that have made me question if I should go forward with this. It kills me, to have been going through separation for 2 years, and have doubts at the final stages. When I was first diagnosed with RA back in March of 2011, I thought to myself… I won’t be able to work, my dreams of having a business of some kind, died… along with dreams of working hard & making something of myself… I felt like some forces had punched me in the gut, kicked me in the head, mugged me, robbed me of life I once dreamed of… how do I go on now, on my own? Going from completely safe & secure, to self supporting unknown. I’ve been overwhelmed with anxiety, panic attacks and out of this world stress.  Having people around me who doubt my ability to make it on my own, hurts. It also keeps feeling like a kick in the ribs. I don’t know if I’m able to make it in NY on my own. I’m a country girl from Finland, who never really found her thing. Who never really figured out, what her purpose in this world is.

My fear is, I will end up damaging my lil one, because I’m selfish. That he will be collateral damage to my need to find me & be the best that I can be.  This post is a little all over the place, I had to just write my thoughts down… to ease the pain. Thanks for reading my ramblings.