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Reminders From My Rheumatologist

went to the doctor yesterday. he reminded me of many things i forget to keep in mind, so I’m writing them down this time:

— you probably wont have any heart or lung issues if your ra is under control.

— you probably wont become deformed or immobilized with joint damage if your ra is under control.

—you know if your ra is under control by the number of joints that are affected currently and how well you generally feel on a daily basis.

— increased cancer risk may just be a cause of the disease, not of the enbrel.

— you could get cancer from something totally unrelated anyway. you just stop the ra drugs, treat the cancer, and go from there.

— once again, you probably won’t get cancer.

— if the enbrel stops working there are at least 7 other drugs to try.

— new drugs are being made! including a pill that was just introduced in november. 

— you can’t really aim to feel perfect, you can aim to feel mostly good though. little things will always bother you, let them go.

— get a flu shot every year. you will not become paralyzed. it will protect your sad immune system.

— bloodwork every six months. a must-do.

— we have made progress. my ra is under control. we found a medicine that works. and it’ll work til it doesn’t anymore and that’s ok.

—we can consider my strength of disease as “in remission.”

— most importantly: doctors who remember the tiniest details of your previous conversations, and who know you by way more than your chart after only two face to face visits are absolutely irreplaceable and completely necessary. you can feel like your doctor has your absolute interest at heart.



Really Good Doctors #2 & Introducing Enbrel

it’s been almost six months since i’ve updated, and although i have a lot to say, i want to try to keep it concise. mainly because things are going well!

the major updates:

i dumped dr. d. — i found a new doctor, dr L, and i love him. he sat with me for an hour and said “tell me everything” as he wrote it on a blank sheet of paper. he held a meeting with numerous radiologists just to review my second foot mri and walked me through why it was so strange. he didn’t want to put me on enbrel right away until he understood my case a bit better. all wins.

i started enbrel — after about a month under dr L, my symptoms were coming back (changing seasons perhaps?) and i was getting frustrated. he didn’t know if we’d be able to even get enbrel approved for me since insurance companies require a certain degree of disease and number of joints affected to approve. dr L seemed to sweet talk them though because within a few weeks i was at his office with nancy-the-nurse who was helping me do my first injection.