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Hello all! I really
need some friends in my boat!
Okay, I guess mostly I just
need to vent. I feel so alone right now. I just saw a rheumy for
the first time last week due to pos. ANA and elevated SED, and was given
a preliminary dx of RA and fibro, but may possibly be lupus. He did a ton
a lab work and an MRI, but I haven't gotten results back yet. Completed a
medrol dose pack, cortisone shots in left wrist and right fingers, started on
Plaquenil and Naproxen a week ago, but still in immense pain and living on
Lortab (which masks to pain long enough for me to overdue it and then leaves me
exhausted.)
I think my
symptoms started maybe 10, or even 15 years ago. I'm 33 now, but for as
long as I can remember I've had symptoms: pain in various joints (from
shoulder, wrists, fingers, toes, hips, to feet) - attributed to
"tendonitis," horrible sores in my mouth, extremely painful knots in
my muscles all the time - especially my back (back pain so bad I sometimes
can't breath), pleuritic pain with no apparent cause, stage 4 endometriosis
(partial hysterectomy in 2004). The most striking is that the smallest
stressor will have me exhausted or all out ill.
Looking back,
I can see the pattern. Everytime I go on vacation I come back seriously
ill – once even with meningitis. I’m always sick during holidays.
Living through a hurricane really did a number on me. Seems like anything
out of the ordinary just does me in. Something as simple as a sinus
infection might require two rounds of antibiotics and cortisone.
I have a very
poor work history. On the surface it appears that I take a job and
quickly get lazy or bored and quit. But the reality is that after a few
months the stress or rigors of the job get to me and my body just runs out of
gas. I just resigned from my dream job last week after 5 months because I
had to keep calling in sick and couldn't hack it anymore. I don’t think
I’m a quitter or lazy, but I know it appears that way.
My husband
says I just can’t regulate myself. He says I go 300% on everything I do
and then I crash and burn. But I don’t think that having a job and
raising 3 kids (13, 11, and 8) is going 300%, because I know so many other
women who do it, and don’t collapse. Just mowing the grass or cleaning
house will have me in the bed for two days. When I was working I had to
call in sick nearly every Friday, because by the end of the week I just
collapse!
The really
difficult thing is I look just fine. I am thin, pretty, apparently in
good shape. My husband points out that my joints “look fine.” I
don’t look sick. Some days I can run a 10K, other days I can't drag
myself to my kid's soccer game. I know I look inconsistent (which is
terrible when parenting).
I think that
getting a dx is giving me permission to accept that there is a reason for these
things happening to me, but I don’t know. Am I lazy?
My husband is Asian and
doesn’t really buy into doctors and medicine and has an enormous work
ethic. He thinks he can “fix” my pain in my wrist by breaking my wrist –
he’s not kidding – and no, I would never let him do that!! But getting
him to understand this illness is going to be difficult. He is a
sweetheart and wonderful to me, but I worry that he just thinks I’m making this
up or just lazy. He doesn't understand how I can have ankle pain on day
1, be fine on day 2, have shoulder pain on day 3, and so on.... It looks
"fishy" to him, I'm sure.
Wow. You are being hard on yourself for no reason. You should be commended, not critisized.
Sorry so long, I’m just really
confused and scared and tired and feel so lonely, and did I mention
tired?! Thanks for listening!!
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