What Advice Would You Give Someone Who's Just Been Diagnosed?

Yesterday, I was asked by a radio host what advice I would give someone who had just been diagnosed. Wow, where do you start?

Well I certainly know what NOT to say (By now, you've all heard my "Top 10 Annoying Things to Say to Someone Who's Just Been Diagnosed." No? it's here: http://youtu.be/NEL6puqRd-I ).

I think I said something about "you have more choices than drugs" and "you can make a difference in your own health" and maybe even "remember to schedule in something fun once a week" and to "take care of your emotional side, because there is a body-mind connection." Something like that. I don't remember. I'm rather "in the moment" when doing radio shows, so I don't usually remember anything I said.

I've not been asked that question on the spot before. Or maybe I have and I said something different.

Anyway, I've been in the process over the last month of creating a "Top tips for people with chronic illness" list, and I would love your input, especially if you yourself have a chronic illness. What do you appreciate hearing, or what would you tell another patient that might help them? Please share your thoughts in the comments section!

Patients helping patients- doesn't get much more therapeutic than that. No one knows like someone who's been there. Thanks for your input! Together, we can make a difference.

Carla

Carla Ulbrich
The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer

http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"
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results of lupus survey

I set up a survey about lupus on surveymonkey.com, with a limit of 100 respondents.
Well, the results are in.

First of all, I sent the results to my husband. It
really hit home with him, after reading everyone's
comments, about how important it is to rest, sleep,
and not have too much stress. he let me off the hook
for a big family gathering today in Yonkers because of
this, and I was able to get the sleep I needed
instead. So I think the survey results might be a
helpful tool in convincing other family members of the
importance of pacing ourselves, and the reality of
this illness.

1) Age of diagnosis: this pretty much confirms
everything you read in the official books, that the
illness strikes largely folks between 20-40, though
people as young a newborn and as old as 60 can still
be diagnosed.

Age of diagnosis:
<15 2.0% 2
15-20 13.0% 13
21-25 15.0% 15
26-30 8.0% 8
31-35 15.0% 15
36-40 13.0% 13
41-45 12.0% 12
46-50 10.0% 10
51-55 6.0% 6
56-60 4.0% 4
61-65 2.0% 2
66-70 0.0% 0

2) how long since diagnosis
less than 6 months 24.0% 24
6-12 months 10.0% 10
1-2 years 11.0% 11
2-5 years 20.0% 20
5-10 years 19.0% 19
10-15 years 10.0% 10
more than 15 years 6.0% 6

3) symptoms experienced:

Though some symptoms were more prevalent thatothers,
every symptom was experience by more than one person,
so no one is alone is their experiences.

I probably should have asked gender (sorry about all
the ovary, breast and period questions, guys!)

most common to least:
Achy joints / arthralgia 92.9% 92
Exhaustion over little to nothing 89.9% 89
Arthritis / swollen joints 85.9% 85

Prolonged or extreme fatigue 79.8% 79
confusion/ forgetfulness 78.8% 78
painful/ swollen joints 77.8% 77
Sun or light sensitivity / photosensitivity 72.7% 72

headaches 67.7% 67
dry skin 66.7% 66
anxiety 66.7% 66
Raynaud's phenomenon / fingers turning white and/or
blue in the cold 65.7% 65
Easily depressed 61.6% 61

fever 63.6% 63
weakness of muscles 61.6% 61
Mouth or nose ulcers 60.6% 60

Hair loss 57.6% 57
Butterfly-shaped rash across the cheeks and nose 57.6%
57
Chest pain and breathing problems 57.6% 57
bruises 57.6% 57
Sores in mouth/nose? 54.5% 54
muscle cramps 53.5% 53
migraines 53.5% 53
Emotional swings before, during or after the period
50.5% 50
Moody 51.5% 51

neuropathy (nerve pain) 49.5% 49
Skin Rashes 48.5% 48
sometimes you feel fine 46.5% 46
fibromyalgia 46.5% 46
Allergies 42.4% 42
bladder/ urinary tract/ kidney infections 42.4% 42
Pain in the chest on deep breathing / pleurisy 42.4%
42

poor appetite 37.4% 37
diarrhea 39.4% 39
visual disturbances 39.4% 39
Malar rash 37.4% 37
anemia 37.4% 37
Other rashes 36.4% 36
lesions on skin 35.4% 35
sinus infections 33.3% 33
thrush/ yeast infection 30.3% 30

hives 27.3% 27
Painful Periods 26.3% 26
Heavy Periods 28.3% 28
Kidney Involvement 25.3% 25
Abnormal blood clotting problems 27.3% 27
food allergies 24.2% 24
Irregular periods 24.2% 24
frequent bronchitis 22.2% 22
Ovarian Cysts 22.2% 22
sinusitis 21.2% 21

other cysts 12.1% 12
Dense breast tissue 12.1% 12
Seizures 11.1% 11
Breast Cysts 10.1% 10
Breast lumps or other breast complications 10.1% 10

Pituitary problems 7.1% 7
stroke 9.1% 9
congestive heart failure 3.0% 3

other symptoms:
-nonfunctioning gallbladder
-stomach infection (Helicobacter pylori), Otitis Media
-frustration/anger
-rib pain
-frequent sore throats
-mouth ulcers/vaginal ulcers
-muscle weakness
-To varied to mention
-double vision, tinnitis,cough syncopy,
-Low Blood Pressure and Temperature until I run a
fever
-irisitis - inflamation of the muscle around the
cornea
-dizziness/vertigo
-pericardial effusion
-Hearing loss
- irregular and slowing heart rate/pacemaker implant


4) time between 1st lupus Dr. visit and diagnosis:

less than 3 months 26.5% 26
that is encouraging to me- maybe people are getting
diganosed more quickly now that they used to be.

3-6 months 9.2% 9

6-9 months 8.2% 8

9months-1 year 12.2% 12

12-18 months 8.2% 8

18-24 months 3.1% 3

longer than 2 years 32.7% 32
this is disturbing! the kind of thing that makes us
feel like hypochondriacs, which can result in our not
going to the doctor soon enough when things are quite
serious.


5) which medical treatments have you been on for
lupus?
Not surpisingly, Prednisone and plaquenil are king. it seems Drs
are moving toward plaquenil to avoid using prednisone,
which we all know is extremely effective but awful
long-term (I still want it as my first option in a
flare, because it works! and then I want to be off it
within a year, because it sucks! talk about a
love/hate relationship). I probably should have lumped
antidepressants into one question instead of listing
specific ones, because that is what i did with the
blood pressure meds.. and clearly from the large
number of "other" there were some major meds I forgot
to list as options, specifically methotrexate,imuran,
NSAIDs, muscle relaxers. the survey results regarding treaments on dailystrength dot org, were also very
revealing in that there are so many treatment options
available to us.

most popular:
placquenil 89.2% 83
prednisone 73.1% 68
vicodin 29.0% 27
aspirin 24.7% 23
blood pressure meds 36.6% 34

chemotherapy 19.4% 18
IV prednisone 18.3% 17
cellcept 17.2% 16
neurontin 17.2% 16
wellbutrin 15.1% 14
lyrica 15.1% 14
percacet 14.0% 13
paxil 12.9% 12

prozac 9.7% 9
transfusions 8.6% 8
Procrit 3.2% 3

Others:
- rituxan
- Celebrex & Norflex
- diuretic, singulair, zocor
- quinine
- Fiorocet
- Methatrexare,Oxtcontin,Zoloft,Muscle relaxer
(skeleton)
- lortab
- Artrotec Amitriptyline co-codamol short courses of
prednisone. all in Ireland so may be different names
- zoloft, fludrocortisone,cimetidine
- lamictal, zonegrain, effexor xr, evoxac,
- methotrexate
- Salgen for Sjogrens and Effexor for depression and
pain
- imuran
-. Amitriptaline 10mg
- Etodolac and Lexapro
- enbrel
- minocin
- MTX
-All the Nsaids, now on Ibuprophen, also on Cymbalta
now for nerve pain and depression
-mobic, ibuprofen, Celebrex, darvoset, and a bunch of
different NASID's I can't remember them all.
- Aggrenox (blood thinner) due to APAS
- Zoloft and Klonopin
- imuran
- warfarin
- Cymbalta,Lortab,Isosorbide(for heart)
- Imuran, methotrexate, amitryptyline
- sodium bicarb for kidneys...& it looks like an iron
supplement (just diagnosed with anemia, waiting on
another blood test)
- Naproxen
- atenolol,tolfenamic acid
-amitryptiline/nortryptiline and tramadol for pain,
meloxicam for inflammation
-Tramadol
-just dx this week, so nothing yet
- imuran, mtx, rituxan
-blood pressure meds, migraine meds
- migraine meds, phenegren
-Cymbalta, Allegra, DHEA
-Kratom (herbal)
-gold salts for RA, Potassium, Iron, Calcium for
nutrient losses


A couple people commented that their doctors are not helping them manage their pain. I have experienced this as well, and may include a question about this on a future survey.

6) other diganosis?
I was a little concerned by therse results that the
osteoporosis and diabetes might be prednisone related.
i probably should have listed all autoimmune diseases
(incl RA) as well as migraines and asthma. anyone know
what APS or umctd are?

i think the number of us with depression and anxiety
is normal, given not just being diagnosis with a
chronic illness, but the lack of understanding and
even stigma- the social crap that comes along with it,
as well as the financial drain, and having to redefine
ourselves as we are no longer capable of doing some
things we used to do.

raynaud's 59.3% 51
depression 53.5% 46
anxiety 47.7% 41
fibromyalgia 45.3% 39
sjogren's 36.0% 31

osteoporosis 14.0% 12
crohn's 5.8% 5
diabetes 5.8% 5
cancer 4.7% 4
scleroderma 3.5% 3


others not listed:
- aps
- chronic renal failure, asthma, SLE, hypertension,
cholesteremia
- Endometriosis
- Neuropathy,Disk Disease,
-mixed connective tissue
-allergies, asmtha, possible MS
- grave's and celiac's
- umctd
-osteoarthritis, Degenerative disc, COPD, pulmanary
fibrosis, migrane syndrome
- Arthritis...not sure which type and Diabetes w/
insulin(but not a true Type 1
- polymyositis, MCTD, hypothyroidism
- Graves
- migraine, chronic fatigue, endometriosis
- RA
- Thyroid Disease
- pretty sure fibromyalgia - just not yet dx
- Mixed Connective tissue disease
- interstitial lung disease
- IBS
- Hughs Syndrome
- brain tumor
- Chronic Kidney Disease stage IV, Interstatial
nephritis (forgive the spelling)
- none diagnosed
- PKD
- endometriosis, mitral valve prolapse, pulmonary
valve prolapse
-vasculitis, peripheral neuropathy, APS, RA
- RA
- Hypermobility Syndrome
-Rheumatoid Arthritis, Congestive heart failure,
Kidney disease


7) do you think any of these things might have
contributed to your illness?
Stress is king here. you all brought up some
interesting culprits in the "other" section, such as
too much antibiotic treatment, tanning beds,
pregnancies. I should have also listed "genetics."

most popular:
stressful working conditions 66.7% 44
repeated sunburns 39.4% 26
unhealthy relationships at home 30.3% 20
smoking 28.8% 19
drinking diet soda daily 21.2% 14
eating mostly packaged/ processed food 21.2% 14
excess salt/ sugar intake 19.7% 13
eating/ drinking nurtasweet (asparatame) 19.7% 13
sedentary lifestyle 16.7% 11
living near pollution source 6.1% 4
vaccines 9.1% 6
extensive dental work 9.1% 6
Sexually transmitted diseases 1.5% 1

others not listed:
-tanning beds
-Antibiotics - lack of enough digestive enzymes
-hereditary autoimmune diseases
-Family history
-Stressful Life--deaths in the family (3 within 2 1/2
years, husband was ill too
- dont know was under 10 years when first symptoms,
would have had a good healthy diet, no dental work, no
sunburns hey I live in Ireland. ha
-Having triplets and a husband who has been to Iraq
three times!
-bad genes
-i had kidney problems at birth, was jaundiced and my
mother recently told me that the hospital i was born
in was undergoing construction at the time.
-My problems began after having Hepatitis many years
ago
- Continuing to go to school with glandular fever /
excessive dieting / excessive exercise
- severe eating disorders in my youth
- skin type
- hormone treatments
- Possible PCB poisoning from childhood
-Since I have had this since early childhood, I have
no idea
-I have psychological problems (namely bipolar) that
I've had for years that seem to at least be aggravated
by lupus

8) Which of the following non-medical treatments have
you pursued?

most popular:

supplements 59.2% 42
diet modification 47.9% 34
journalling 39.4% 28
herbs 38.0% 27
meditation 33.8% 24
psychotherapy 32.4% 23
acupuncture 26.8% 19
food allergy testing 21.1% 15
Reiki 14.1% 10
detox therapies 11.3% 8
lymphatic massage 9.9% 7
bodytalk 5.6% 4
Qi Gong (Chi Gong) 4.2% 3
Tai Chi 4.2% 3
fasting 4.2% 3
cranioscral therapy 2.8% 2
chelation therapy 1.4% 1
biological dentistry 1.4% 1

others not listed:
- prayer
-massage, but not sure if lymphatic, jacuzzi for sore
muscles
-rolfing
-If covered by insurance, I'd try most of these
options!
-yoga
-chiropractor
-Seeking medical treatment
-I've begun a very all natural/organic diet that has
helped alot!
-Regular gentle exercise
-water aerobics


I found moSt interesting how popular journalling is! a
healthy outlet for all those feelings. I have done SO
much writing during these last 16 years of dealing
with lupus. it's not just me!

further i want to point out - someone said "if covered
by insurance i'd try all of these!"
you might be surprised what is covered by insurance.
my old insurance covered chiropractic (which i
eventually gave up on, but at least i only paid $7
co-pays to find that out), and my new insurance covers
acupuncture! some will cover massage if your Dr
prescribes it. so don't just assume it's not covered. And of course journalling is basically free. you can get spiral bound notebooks for 10 cents during back-to-school sales.

9) have you ever lost a job because of lupus?
I was fired 6.9% 5
I was laid off 2.8% 2
I had to cut back to part-time 26.4% 19
I continue to work full-time 31.9% 23
I was not employed at the time I became ill 31.9% 23

-I could not keep my job as they foun dout about my
disk disease..shortly after getting fired I found out
I had lupus and it was no doubt the cause of the pain
I was having everywhere.
- left job had no diagnosis at the time, but too
tired to function, medical field, could not take
chances
- I had to quit because of Sjogrens, and fibromyalgia
and MOSTLY EXHAUSTION 5 years ago
- other jobs, I have only took part time because of
exhaustion
- had to leave because of my health
-I had to go out on disability because I missed 60
days in one year
-I quit and went on disability
-Twice

I have to interject here, IT IS ILLEGAL TO FIRE
SOMEONE BECAUSE OF THEIR ILLNESS. YOU CAN SUE THEM.

Furthermore, DO NOT WAIT to apply to disability. the
longer you wait to apply, the lower your benefits will
be because your income is based on the previous 7
years' work record. Take it from someone who knows firsthand.

10) What have you found most effective in controlling
your symptoms?

#1 answer: rest, sleep, rest, sleep, rest!!!!!!!

- Therapy! It's great to have someone who has to
listen to you talk about everything that is going on
and takes you seriously.
- So far, the prednisone, with side effects. Also,
taking advil and pain meds when needed
- none
- Too early to say since I've only been diagnosed 1
week ago, but in the past few weeks I have trying to
adopt a very healthy and fresh diet, avoiding some of
the foods that are usual suspects in food
intolerances, such as dairy and wheat.
- Lots of rest
- Lots of rest, meditation and trying to keep stress
to a minimum also no alcohol or smoking really helps.
- So far, Prednisone is the only medication that
takes a flare away. I haven't been on Plaquenil long
enough to evaluate its effectiveness yet. Staying out
of the sun and trying to avoid being overworked and
overstressed helps but the latter is almost
impossible. I can barely keep working full time.
- acupuncture, prednisone, relaxation techniques
- Darvocette's, Ultram
- I was just given prednisone and it has helped me so
much. The inflammtion was making me have so much
swelling,pain and I was short of breathe..now I feel
better!
-avoid stress, try to have positive approach to the
stresses that do present themselves. try not to
concentrate on what I cant do but on what I can. pace
things rest frequently. meds as above when required.
hot baths. massage. some days nothing works..
-none
- still learning, natural lifestyle does help with my
sjogrens
-phase 3 belimumab study
- Resting and Sleeping a lot!
- Sleep, control stress, relaxation, no sun
-Keep out of warm sun
- limit stress, take meds as prescribed, hobbies,
stay involved in life, get back in some way
(volunteering)
- Lots of rest helps, and working straight days has
helped so I maintain a regular sleep pattern, this has
enable me to stabalize and control my fatigue in a
major way.
- staying on schedule for drugs and recognizing
symptoms early and ACTING on them. Not waiting because
we are crazy LOL
-I haven't really found any that I would say are
effective. 14yrs and I have not had a remission longer
than 2 good days in a row.
- Prednisone,Cellcept, Not to let toxic relationships
bother me.
- nothing!!!
-Not sure yet...still going thru 'the process'.
Placquenil made the most dramatic difference so far as
meds. I haven't been put on an effective pain relief
yet! My Rheumy has suggested a low dose of
Methotrexate to add to my mix of meds, just 2 wks ago,
to control my Arthritis pain and symptoms, but I'm not
sure that it will help...I think I just need more
adequate pain relief to relive my symptoms. I don't
want to go on Methotrexate or any of the 'damage
causing' meds unless I have too. I don't feel I'm at
that point and I think Dr's put us on THOSE drugs too
easily and too soon w/out understanding all of the
ramifications to us! I am going to look into
alternatives, altho money is ALWAYS an issue because
that option isn't covered by insurance.

-changing my diet, eliminating chemicals, yoga,
chemotherapy, sleep.
- Prednisone, naproxine
- not working anymore...
-Actually I have not been properly diagnosed yet. I
have signs and symptoms consistant with RA and Lupus
and could likely have both and a few other things as
well. I am planning to return to work soon.

- exercising whenever I can/remembering to pace
myself (I try!) being around positive people as much
as possible, plaquenil, vicodin - am starting on
methotrexate in 2 days. My counselor is helping me to
learn "body talk"

- Plaquenil has helped me more than anything.
Sometimes I think food plays a role too.
- Going to bed BEFORE I become exhausted to the point
that I can't go to sleep. Listening better to my body.
Rituxan treatment.
- diet control has been helpful
- I've just begun taking plaqunil and it seems to be
helping.
- I am still trying to find effective ways... I
really like the idea of getting help from other Lupus
patients...they have been there themselves vs. the
docs!

- diet control - I now see a Naturopath as well as my
regular lupus doctor at the hospital.
- Plaquenil made the biggest difference. Staying out
of sunlight and unfiltered fluorescent light is also
important. Rest when not working is essential. I've
had to let go of a lot of things - friendships,
hobbies, certain recreational activities.

- just taking notice of body changes, when i feel
good i do things and not over strach my activities.

-DHEA has hugely improved my quality of life. So have
the pain meds.

- I try not to feel sorry for myself mostly. I go
through periods of depression and I always feel worse
but when i accept it and just deal I feel a little
better.

- Getting enough sleep and not overtaxing my body.
- none as of yet :/

- Prednisone helped with the pain but other than that
all symptoms persist and new ones have appeared.

-The CellCept brought me back from the brink of total
kidney failure very quickly. Plaquenil has helped
immensely too. I walk often and rest often.

- taking medications regularly resting frequently
staying out of the sun wearing sunscreen every day

- I do not have control, I just go with the flow, and
my docs treat symptoms as they arise. I think this is
why I am still alive today, because they did not wait
for positive ANA's, they went with their gut.

-This is hard to answer. When multi-system
involvement occurs, I needed prednisone. Acupuncture,
whole foods, herbal medicine and chiropractic help me
manage lupus and my life. The hard meds are there for
severe flares and disease treatment.

- Resting when needed. Adjusting my diet and avoiding
direct sunlight.

- keeping healthy. my biggest problem at the moment is
light sensitivity...malor rash. Spf 70,makeup and a
hat dont prevent rshes on my face. soo very
frustrating.

what's on *your* mind?

I created a little survey for lupus patients. wanna take it?
Click Here to take survey

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 :)