lupus survey

Someone on line posted some questions for a school project on lupus. Here are my answers...

1.What do you experience from this immune system
disorder that you might like to share with students
studying lupus?

Symptoms from lupus: weight loss, hair loss, very dry skin, lesions, digestive problems, loss of appetite,
menstrual irregularity (stopped for 18 months, then went heavy flow for 6 weeks before I finally went to
th eOBGYN for some provera... TMI? diarrhea too!), exhaustion, joint pain, mood swings, swelling, migraines, lack of sexual drive, depression, visual problems, peripheral neuropathy, stroke, kidney failure, pleurisy, anemia, shortness of breath, sjogren's, raynaud's, photosensitivity, intolerance to cold temperatures and loud noises, anxiety, insomnia, depression. (I have been struggling with lupus since 1992, so... long history)

symptoms from prescriptions: weight gain, moonpie face, ratty dry hair, mood swings, more insomnia, more
anxiety, sleepiness, more diarrhea. and abdominal pain and vomiting (from the chemotherapy). and poverty.

Emotions: grief, loss, anger, fear, feeling of having my youth robbed. stubbornness/ denial, resentment of "normal people," especially those who tell me "it could be worse" or try to find some way to blame me for my illness or tell me I'm imagining it (includes doctors), resolve, confusion, feeling overwhelmed, determination (trying all sorts of alternative means of getting better). relief found in using humor, journalling, talking to others who understand, thinking about something other than being sick and. or trying to get well.

financial: devastation. loss of job due to illness, mounting bills from doctors and credit cards (buying
prescriptions and paying living expenses). this happens every time i have a flare (3 so far). i did
finalyl qualify for social security but by the time that happened my benefits were down to $500 a month.
not to be ungrateful but...

reactions from the public: people staring at me, asking me invasive questions, blaming me for my own
illness (do you smoke? no... is it genetic? not really. "you're doing god's will do the devil is
attacking you." "you've got hidden sin so you're no longer under god's protection" ... pick one people
they can't both be right!). i have basically chosen not to tell people up front that i ahve lupus. there
is still too much stigma, too much fear and misunderstanding. i want people to know me first,
then, if they're trustworthy (meaning they won't judge me and ask a bunch of stupid or insulting questions) i
reveal my diagnosis. of course if i'm in a room full of lupus patients, then of course i tell them right
away. or, now, on my blog, which is not exactly secret...

spiritual growth: i have learned that lupus is basically a do-it-yourself disease. your quality of
life is largely determined by how willing you are to take control of your own well-being. being ill has
caused me to slow down, to be more judicious with my time and energy, get rid of toxic relationships (or
limit time with that person) basically i'm having to learn to quit putting my needs last. and if something
is bothering me, i can't afford to say nothing- it will literally make me sick.

Also, med students and doctors should know that it is very hard on one's self-esteem, especially a woman's, to lose their hair, suddenly gain weight and have ruddy skin and a moon face. This is why we don't want to take prednisone. For some of us, it causes horrible mood swings. Both these can be alleviated with diuretics and something like a low dose of attivan. Prednisone is so destructive that piling a little attivan on top is going to do more good than harm. Please don't condescend and treat us like little kids "well you *have * to take it.) Most of us know that. Just acknowledge that it sucks and that as soon as a better option comes along, you'll offer it. OK?

2.Can you put into your own words what it is like to have lupus.

I think I just did. It mostly sucks. But there are ways to make lemonade out of the lemons. It just takes persistent effort, and a conscious choice not to be a victim.

3.Have you had any special hobbies or special interests that you had to drop or change due to lupus?
If so, what are they?

aerobics - too harsh, aggravates joint and muscle pain
snow skiing - can't tolerate cold anymore
full-time work. this is also hard on the self-esteem (and of course pocketbook)

4.Describe an incident dealing with lupus that really made you think about having lupus.

I went to a psychologist (so i could yell at someone for an hour a week). Finally one day, after telling her the next alternative treatment I was going to try, she told me I needed to "accept my illness." I'm still not really ready to do that in some ways. I'm not in denial, I know it's there and I have to take my meds, and rest, and all, but I still believe and even know from experience that the right mix of acupuncture and stress management and strict diet can leave me symptom-free and looking and feeling good (it's just so hard to stick with, with pizza and ice cream and junk food in your face at every turn).


5.Who or what has influenced the way you have dealt with lupus?

the book "love medicine and miracles" and
"anatomy of an illness"
and the movie "patch adams"

6.Has having lupus altered the way you perceive life and people in general? Has this adjustment changed the
way you view daily routines?

It has made me far more compassionate. When i was diagnosed, i was only 25, and of cousre
reacted like most folks initially "why me??" but you start to realize that there is so much illness
and suffering in the world, that you eventually think "why not me- the odds were pretty good something would
happen to me!"

It has made me take responsibility for my well-being, and to accept the consequences of my own actions. If I overextend myself, i pay for it right away.

It also has made me re-think everything in our culture. I don't believe that all illnesses are caused by germs and genes. I don't think everyone with "MD" after their name is a genius, or even necessarily up to date on lupus, because who ahs the time with all the stupid paperwork they have to do (not to mention all the drug reps they have to flirt with). I treat them as consultants, not Gods. The final decision on everything rests with me.

I think some - many- diseases are results of our toxic lifestyles, with not enough joy, or love, or nutritious natural food or clean air and water or exercise. We seem to be having an autoimmune epidemic right now. why is that? is it our food? maybe eating crap all day then sitting on our butts 24/7 isn't good for us? maybe being under constant mental stimulation
and stress is not healthy either? certainly the state of our emotions affects the state of our being, and our bodies.
why does our medicine only address symptoms and not the root causes?

i try to be more mindful of what i put in my body, and i take greens, fish oil, a multi vitamin, and milk
thistle every day to counterbalance some of the toxicity of the drugs I'm still on. I also allow myself to sleep more than "regular" people. I just have to.

And I have learned to keep this thing to myself so I don't have to constantly defend myself for sleeping a lot, not working full time, having to cancel social engagements, etc. People just can't understand if they haven't been there.

7.Has the medical profession been able to offer relief, aid, or service in dealing with lupus? If so,
how?

The medical profession, meaning our "official" medical profession, offers me drugs and tests to monitor and
control my condition. and i pay for it out the wazoo. and for all it costs, they are truly limited in what
they can do. they cannot cure us. Some of them make deadly mistakes and some are very rude. (and some don't wash their hands...) Some are kind. One cussed me out for not taking prednisone. Another "fired" me for "questioning her authority" (I used to bring highlighted articles in and ask her about them). I've had all flavors.

so i spend a lot of money out of pocket (or should i say on my credit card) so i can do better than just have a "remission" on paper; not just get the test numbers to improve, but to actually feel better, to feel like doing something,
and not literally be crawling up the stairs to do it.

so, yes they help me by getting the flare under control and keeping me from dying. then in order to
get from just "not dying" (but sleeping all the time, having lots of headaches and no energy) to actually
"living" i have to go get acupuncture, chelation, and do extreme diet modification and carefully controlled
exercise. either way, it makes for a full time job, maintaining my health.

the one big change lupus has made in my life is that i no longer am an employee. it is not an option for me
to work 40 hours a week. i would collapse on the 3rd day. so i work for myself. I write funny songs (some
of them about having lupus, and i call myself "the singing patient") and i perform once in a while. it's
very rewarding, being able to laugh about all this, and to help others do the same. i don't miss working
retail, or begging for a day off, or having my boss hit on me. not even for a minute... So, there's my lemonade :)