Wednesday, 25 May 2016

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


Image: gingerbread men with differing outfits.  Text: Every story of life with lupus is unique. For World Lupus Day 2016, we're taking the whole month of May to share our stories.



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

1 comment:

  1. Thank you for sharing your story. I've had lupus since 2008 also. After years of treatment and things not working I finally went away from a rheumatologist and say just a holistic family doctor. She suggested we try a new treatment which was low-dose naltrexone. In high doses (50mg) it helps peopel with addictions but in low dose (I take 1.5 mg) it is found to help people with autoimune diseases such as MS, parkinsons and lupus to naem a few. Within 2 weeks all my joint pain went away and I've had a lot more energy. I've since started bidy building to rebuild all the muscle mass I lost on a 4 months high dose of prednisone. I haven't had a majot flare since starting it almost a year ago. Highly recommend looking into it. Debbie

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