Tell Me Your Story: Suzanne Sagester

Suzanne Sagester

First time I heard that phrase, I was sitting in my doctor's office yet again because I was sick and flaring.  I have Lupus.  Diagnosed in 2008 and this way of life was my new normal.

I've always been energetic, "go for the gusto", "fun-loving", "life of the party"....you get the picture.  After years of being a legal assistant and an Assistant Property Manager/Office Administrator, I finally decided to go for my dream job.  At the age of 45, I went back to college and graduated cum laude with a Bachelor's Degree in Nursing.  All through school, I was tired...bone tired.  My first job out of college was being a nurse in the Surgical/Trauma Intensive Care Unit.  I had to work 12-hour shifts (NEVER just 12 hours) and a lot of overnight shifts.  That is when I began to get sick. The first major illness I had was pleurisy and I was out of work a week.  I just never seemed to recover.  I was always exhausted and catching everything coming down the pike.  Doctors all diagnosed me with "my age" and "work" being the culprits.



I ended up having to leave my dream job because I just could not do the overnights and it was required.  I got a job as a RN for a gastrointestinal group, ending up as Charge Nurse for them.  A highly stressful job.  I was repeatedly sick.  Always upper respiratory infections, colds and viruses...saw my PCP and pulmonologists and gastro docs, etc.  After one particularly bad illness, my body was in awful pain and I felt like I was made out of lead.  My PCP took blood work again and this time he called me to tell me he thought I had Lupus and sent me to a rheumatologist.  That was the beginning of my knowing about my new normal.  I was beyond shocked and very scared because this disease can invade your brain, kidneys, lungs, skin and even the gastrointestinal system.  It can be fatal.

I ended up having to leave my job after a three month absence due to illness.  I lost many friends because they got tired of asking me places and I was either sick or too tired.  The people in my family who have not researched Lupus don't understand and, even though they mean well, they offer advice such as "don't let it rule you", "exercise", "force yourself to get out more", "you don't look sick", and on and on.  Everything has changed for me and there have been many times when I thought about suicide.  I am a Christian so it is not an option; but I did and have seriously considered it.

Lupus is a big lie.  It will allow you to feel good a day or two and you find yourself cramming everything into that one or two days, which overdoes it and then you're sick for a week or more.  The symptoms go from headaches to your body feeling like it's been punched for hours to hair falling out to nose and mouth sores, to skin lesions that leave scars, to weight gain and high blood pressure because of all the meds you have to take...or all of them together.  Making plans is almost impossible because you NEVER know when the wolf will strike.

This is my new normal.  Every.  Single.  Day.  And lots of my Lupie friends have it worse.  Their organs have been attacked.  I have had numerous CT scans of my abdomen and lungs because of problems.  The fear of this and the depression is overwhelming.  That is the New Normal and it is hard and sad.  Hopefully, new and better medicines will become available to cure Lupus.  Maybe my Lupus will go into remission and not come back.  That is my prayer for us all.  Until then, we will just continue to live our New Normal lives the best we can.

Suzanne Sagester

This post was part of World Lupus Day activities throughout May on Sometimes, it is Lupus.  

Tell Me Your Story: Robyn Duffield

Lovely Lupie Robyn Duffield,
with her husband Stephen who
has Parkinson's

A parky and a lupie

We sit and ponder the future
what will it be...
as a parky and a lupie we laugh and cry
as our future is not what we thought it would be

We know we need to exercise
and the lupie is good at that
while the parky would just like the arm to swing
rather than acting like a brat

We both struggle with fatigue and get tired
the parky has a nanna-nap
the lupie crashes early in the night
while the parky moves all night like a flap



The pain we have is different
sometimes we feel like two stones
the parky has stiffness and freezing
the lupie just wishes the body joints don’t moan

There is no cure the doctors state
but together we will cope
as the parky and the lupie
now have a shared single vision to elope

Stress is not good for us
so we are lucky to be together
to help us through the challenges
that we will face every day forever

If you like Robyn's poetry, you can find more (along with her husband's poetry about living with Parkinson's)  here: http://www.parkypoems.invictaprojects.com.au/blog/?p=10

This post was part of the World Lupus Day activities, being held throughout May on Sometimes, it is Lupus.

Tell Me Your Story: Mary Cyr Dacus

Mary Cyr Dacus

Mary here...I was diagnosed in 1995 with Lupus after years of aches and pains, mystery illnesses and countless doctors and as many diagnoses. Included in those diagnoses, hypochondria.

Actually it was my wonderful orthopaedic that suggested that I see a rheumatologist. Back at that time, all books in the library gave a 5 year life expectancy. I had 2 children still at home. My husband was a long haul truck driver, so I was almost a single mom. My parents were 500 miles away.

I had few friends. My only sibling was a brother who was also 500 miles away.

Basically I was on my own with this scary diagnosis.
Fortunately, after I saw my new doctor, I learned I could live a relatively normal life.  He started me on NSAIDS and Plaquenil. Soon I was feeling better.

Tell Me Your Story: Mrs Lupus

Mrs Lupus

I am not sure when my first symptoms of lupus started, but I remember being sick intermittently.

I would have symptoms that would come and go. I would always feel worse in the winter, but I would just think I was constantly having different viruses. I would get rashes on and off for years, but I ignored them and just thought they would go away, and luckily they would. I started to take over the counter anti-inflammatories daily, and that would help curb my pain. I always had something to blame my symptoms on, something other than a serious disease.

Six years ago (or so, brain fog) my internist at the time put together all of my symptoms and told me she thought I had lupus, and scheduled me for an appointment with a Rheumatologist. Due to the appointment being months away, by the time it came, I was no longer feeling bad. I stupidly canceled the appointment. I was not educated about lupus, and refused to learn anything about it due to fear. I did not realize that this doctor was unlike so many other doctors, in the fact that she was educated on lupus, while so many others are not. And that she was actually listening to me and really hearing me.

I tried to ignore my symptoms, but it all came to a head 6 years ago when I developed graves disease (autoimmune thyroid disease, overactive thyroid)I became extremely ill and dropped 30lbs. I was not overweight to begin with, and it was dramatic. I finally got diagnosed with graves, which is not hard to diagnose, but it seems that docs even have a problem doing proper blood tests for that disease. Then I started having trouble walking, then I could not walk. My doctors were not listening to me, so I switched doctors a couple of times, and finally went to a rheumy. This is where most people without lupus think our journey ends, and our diagnosis and treatment for lupus begins, but unfortunately it is just the beginning of not being listened to.

I found out the hard way that not all rheumies are created equally, meaning some should not be practicing medicine. This doctor, who shall remain nameless, due to me not wanting a defamation of character law suit on my hands, was so awful I do not think I could capture her cruelty in writing! Keep in mind that I could not walk and she would not do anymore blood testing on me or listen to me. She lied and said I had a negative ANA, when it was positive and she acted like I was wasting her time, like I was a hypochondriac (A person who is abnormally anxious about their health.)She actually ended up calling me due to some complaints and apologized for "being indifferent" which was an understatement. She went on to explain why she said my ANA was negative when it was positive, and that she thought I was so sick I needed to be hospitalized!! Yeah you read that correctly, she sent me away like I was just there because I was enjoying myself, but she actually thought I was extremely ill. My thought was, how does she treat people who do not look as sick as I do and can walk!! She proceeded to ask me if I was sure I wanted to continue to see another rheumy!! Of course there are many others with awful experiences with her and many other rheumies. Why are there so many "indifferent" rheumies? I wish I knew but many of us have the same story.

I decided to get a lupus diagnosis or be told it wasn't lupus from the University of Pittsburgh's Lupus Center. I saw a beautiful rheumy there! She listened to everything, she looked at all of my pictures of rashes, ulcers,inflammation, she gave me a proper exam and actually touched me! She watched me walk or lack of walking, she sent me for 12 vials of blood. I was so prepared for this visit, because with lupus you have to be. I kept a list of all of my symptoms, we were both thorough. She told me due to my other blood tests and my big folder of medical history, before I even left the examining room that I had lupus or undifferentiated connective tissue disease. Both are treated the same way. She gave me lupus meds and sent me for her blood tests. I had just gotten out of the hospital at that point and I begged the doctor to let me out due to that important appointment. I see another local rheumy now because Pittsburgh is 4 hours away from me, and I am too sick most of the time to travel so far. This was my journey to a lupus diagnosis.

You can find the amazing Mrs Lupus at her Blog, and her Facebook page.

This story is part of the Sometimes, it is Lupus events to mark World Lupus Day in May.

Tell Me Your Story: Toya Terry

Toya Terry

My name is Toya Terry. I was born in Cincinnati, Ohio and raised there for a short period of time.

I was diagnosed with Systemic Lupus Erythematosus in 1995, and then I moved to California. When I first moved to California my diagnosis was changed to MCTD (mixed connective tissue disease). Since my first diagnosis, I have discovered that I have the factor V Leiden mutation, pulmonary embolism, ITP (idiopathic thrombocytopenia purpura), anemia, arthritis, membranous lupus nephritis and possibly fibromyalgia.

Aside of that I am the mother of a very handsome and vibrant little boy. My life has been extremely challenging since my time as a young girl. But I’ve managed to make the best of it.

I choose to express my hurt, pain and experiences with lupus through poetry. I wrote a poetry book called, "A Piece of Me".

For more information check out my website: www.toydeann.com
 We definitely don't get the recognition that we deserve. I'm hoping that you are able to share this with others in hopes that they will better understand our experiences.  Please share and like my page:  https://www.facebook.com/ToyDeann/?fref=ts

Toya is sharing her story as part of our World Lupus Day activities, which are going through all of May (because life with lupus is too big an issue for just one day.)