Home Community Member Stories Loretta

Loretta's Story

spiritofslim@prodigy.net

My name is Loretta. When I discovered this site I was amazed. I hit many
of the features, including the chat rooms, where I was sometimes less than
kind - my alienation from community of any sort was at an all-time high. I
earnestly apologize to any who were hurt by my anger.

I have RA. I had had pain in my feet for over a year, but thought, "Well,
you're fat, of course your feet hurt." In January '99 my hands began to
hurt, and I thought, "THAT'S not because you're fat!" Took a while to make
the phone call, another while before I was seen by my gynecologist's PA
(huh?). I give credit to the PA for pushing through my referral to a
specialist. She had me tested for Lyme's, Lupus, and -I thought- for RA,
which all came back negative, but she referred me to a rheumatologist
anyway. I then had to track down a rheumatologist on my own. Typical
answer was, "Oh, he/she won't be able to see you for at least three months."
I was panicking by then, and found a "new kid in town" who could see me
within a few weeks. He wasn't new to the field, just relocating to my area.
In fact his training began long enough ago that one of his diplomas was from
"The New York Society for the Ruptured and Crippled" (circa: 1960s). Ouch!
He ran tests, which came back with a positive Rfactor. He started me on
DMARDs immediately.

The week I got my diagnosis went like this: I had a paper due in my
cultural anthropology class which required me to interview someone from
another culture and define and discuss three cultural areas. I had two
false starts, with the paper partly done when my contacts flaked on me. I
had an appointment with a third person on Saturday. On Friday I got a phone
call from New York: a close friend who had been diagnosed with breast
cancer one-and-a-half years earlier had died. I had flown to NY several
times to help with her care. She left two children, 4, and 9 years old.
Her husband had died three years previously at the age of 43.

So, Saturday morning I woke up with puffy eyes, and was walking out the door
to go to my Latin tutorial before meeting with my last hope of getting the
paper done for the anthro class. The phone rang and it was my best friend's
husband: "Janet needs you to go to her parents' house." (I live nearer her
parents than she does, by a couple of hours.) I said, "Okay. Do I need to
go right now?" "Yes," he replied, then I heard him ask Janet, "Do you want
me to tell her anything else?" Janet got on the line, and said in a barely
controlled voice, "My mother thinks my father is dead on the couch." I
said, "I'm on my way." Yes he was dead, and no I didn't get to meet with
my contact for my paper (I rescheduled) and, no, I didn't get home for
another 24 hours.

On Sunday, after spending the night with my friend's family, I went to meet
with my new subject. By this time I was having pain in my knees, feet,
hands, and elbows. I made the meeting, but almost didn't make it out of the
gas station, where I wasn't sure if I'd be able to walk in to pay the
attendant. I came home, my husband put me in bed and tucked pillows under
my knees and shoulders.

Monday I went to classes - my saving grace. I still didn't have enough
information to complete my paper, but my contact had agreed to talk to me on
the phone so I still had hope. Not well placed. My friend and her family
needed my presence, and I had to blow off any hope of getting an A in my
class ( I am a grade-hound).

I went to my rhuematologist on Tuesday and got the bad news. He was anxious
for my well-being and, since he was putting me on Plaquenil, offered to
schedule my eye exam with an opthamologist in the same building for that
very afternoon. With a long face, and tears clouding my voice (and I
actually felt sorry for HIM at this point), I said, "I can't, I have to go
to a Rosary." Pathetic doesn't begin to describe it. Fortunately the
family of the deceased had experience with RA and insisted that I not kneel
for the Rosary (I am no longer a practicing Catholic, but try to conform
when the situation requires.)

There is some light at the end of this tunnel. Between water exercise - in
which I am fortunate enough to have a very well-trained instructor - and
drugs, I have been doing pretty well. I am in better shape than I was a
year ago, though I still have better and worse days, and have wistful
memories of the days I had no chronic pain. Oddly, I had long been grateful
on a daily basis for a functioning body - I am a certified therapeutic
riding instructor. Guess which disease is one of the few contraindications
for therapeutic riding? My mare died six months before I was diagnosed, and
I still plan to have another horse or two, whether I can ride or not.

I am still grateful for my level of functioning. I do get angry and
depressed about my limitations. Often. My husband and two closest friends
have been very supportive. My family mostly doesn't want to hear about it,
and my in-laws sent me articles for a while, and gave the classic response,
"Oh, our friend, Cliff has that and he just takes aspirin and ignores it!"
I'm happy for Cliff, but will encourage my in-laws to check out this site.
I think they'll learn a lot.

Loretta

P.S. Slim is a cat who inspired the best in all who knew him.