Take this, and this, and that, and this for that......

That's what a doctor, or a Rheumatologist, sounds like to a patient (me). My journey with RA began almost a year ago and I've only taken one drug for it- Prednisone (steroid medication), but doctors push drugs like crazy. It's as if they are covering up for their shortcomings; not knowing much about RA. They focus on and want to help with RA symptoms, but prescribe drugs that make the rest of your body much worse, and then guess what- you need more drugs. Don't get me wrong, I hate taking prednisone, but without it I am a walking disaster. HA, scratch the walking part, I can't even barely walk without it.

I have evaded many drug pushing Rheumatologists by simply saying I'm trying to get pregnant. Most, almost all, of the drugs for RA are not suitable for a pregnant woman. This has been my line, but it still doesn't stop them from pushing the drugs. I now view doctors totally different- they seem like drug experts rather than doctors of illness for sick people. I never get my questions answered- these questions are all general RA questions, things any proactive patient would ask. They really know very little about the disease, and so much about the drugs. Am I the only one that this seems strange to?

All of you healthy people out there beware with falling back on the comfortable notion that doctors are experts and know best about your body when you get ill. I used to rest at ease thinking if I get sick, the doctors know what to do- ha, totally wrong. You have to become an expert on your body- you can do that now while you're healthy or you can wait until you have health issues. In order of hiearchy, we get sick and depend on Docs to help us, then we depend on God (for some of us), but you also have to believe in your own body and healing yourself or at least becoming very proactive in your health and finding a Doc that doesn't look at your proactiveness as a pain in their butt. While God may be looking out for you, doctors are not.

I asked my Rheumy (Rheumatologist) about a specific drug, Enbrel, and how I've heard it can cause Lupus or MS or even Lymphoma cancer. The Rheumy replied that it has caused lupus in a handful of her patients. That is supposed to make me feel better- "only a handful"? So if my Rheumy has had a handful of patients with this issue, that means it's possible all other Rheumy's have had some patients with this problem too. Add up all those handfuls and that's a significant bunch of patients who just wanted to improve their RA symptoms and got Lupus to boot.

I'm still only on Prednisone and various vitamins- extra calcium and vitamin D. I went to my Rheumy yesterday and again evaded the drug pushing. She warns me that I might be deforming my joints as if that should scare me when I compare it to getting another autoimmune illness or cancer or deadly infections (all caused by RA drugs). I told her my husband and I weren't really trying this past couple months to get pregnant, which is true, but that we were going to start trying again "so no drugs for me".

I asked to be tested for vitamin deficiencies and hormone levels. No doctor has ever suggested these tests along my RA journey but I had been doing some research and learn these are important tests for autoimmune sufferers. RA is significantly more prevalent in women. Could be hormones. I know my RA symptoms get drastically worse during my menstrual cycle. Could be hormones.

I finally stated my goal to my Rheumy in a way that made sense to me, maybe even her too hopefully: "I want to meet the drugs halfway. I would like to fix some of the problem on my own or with holistic medicine/treatments and some with drugs- IF I HAVE TO." Many people with RA are on tons of medication and I don't want that. Goal stated!

How Are You Doing?

UGH!!!
I'm beginning to hate that question- "How are you doing"? not specifically the words, but the delivery from other people since I've had RA. Whenever I see people who know I have RA, they ask "How are you doing"? I should be happy they care to know or even ask. However, this question is now asked in a way that assumes impending doom. The tone in people's voice is like they're already expecting the worst. If someone asks this question it usually has a light tone ending on a cheery note, but now this question is like hearing the last/left deepest chords on a piano- da da da doom. How awful! I must be doing awful by the way the person is asking. "I was doing ok until you asked that question". At least I thought I was ok.
How
are
you
doing?
It
just
keeps
getting
deeper
and
lower
like
I
have
to
dig
my
way
out
of
a
hole
just
to
answer..................
How am I doing today? I'll tell you the real version, which I don't share with most people. Well, my joints are really hurting. I tried tapering my Prednisone by just 2.5mg but I'm back to having too much pain. Too much pain for me is when my larger joints hurt too much to sleep well, like my hip or my knees. I can handle my hands hurting, my feet, or even my one bad elbow.
My daughter decided to get up early today because somehow the evil 2yr old in her knew mama was having joint problems and would have liked to sleep in. She got up 2 hours early- what are the chances? So I'm going to count the hours away and try to painfully entertain my daughter.