2019 Walk to End Lupus Now, Tampa

LET THE WALK BEGIN!
LET THE WALK BEGIN!

Looney Lori's Loopers

Welcome to the Looney Lori's Loopers team page!

23 years ago Lori was diagnosed with Lupus. As most of you know since then she has also developed many other conditions. I encourage you to read her story below to see just how devastating this disease can be. We have learned over the years how to manage her illness. Knock on wood the past few years have been fairly uneventful but we know from experience this disease can strike just about anywhere in Lori’s body at any time. You just never know what’s ahead.   

We started walking 7 years ago. Since then we have raised over $32,000.00 for the Lupus Foundation! We are truly grateful to all of our friends and family that continually support us year after year. Please consider supporting us again this year. Your donations just may help us find a cure.  

Thank you all in advance for helping us out once again!
Rick & Lori

 

The impact of Lupus on Lori over the past 23 years  

In 1996 Lori had been sick. Headaches, body pain, and a rash. Nobody could figure out what was wrong with her. Finally, she went to see a dermatologist and with one look he diagnosed her with Lupus. The classic butterfly rash. Blood tests confirmed his diagnosis.
Lori is 36 years old when she was diagnosed with Lupus.

In 1998 she was diagnosed with Rheumatoid Arthritis. We were told at the time Lupus can and does affect everyone differently. RA is, however, a very common secondary disease many people with Lupus will develop.
38 years old. Diagnosed with Lupus and Rheumatoid Arthritis (RA).

In January 2000 she started getting severe migraines, the kind that would put her in a dark room for a couple of days. A secondary illness from the Lupus? Nobody knows for sure. Later that same year she developed hypertension. Probably not related to Lupus but will certainly not help her overall health.
40 years old. Diagnosed with Lupus, RA, Migraines and High Blood Pressure

Forward to 2003, Fibromyalgia! In 2003 there were many doctors who believed this was a "trash can disease" that didn't really exist. Fortunately many have been educated since then. If you've ever seen a doctor check the "fibro points" on a patient with an active case you will have no doubt the disease is real! I've never seen anyone jump like that! 
43 years old. Diagnosed with Lupus, RA, Migraines, High Blood Pressure and Fibromyalgia.

Lori is still leading a "normal" life. Working full time as the membership director at the Safety Harbor Resort and Spa and still raising the family. She has also started working out, walking the treadmill on her lunch breaks and doing everything she can to keep herself from succumbing to the now 5 diseases she has been diagnosed with. It seemed like a good plan, however, looking back maybe it wasn't.

In 2004, that same year she was working out, lupus attacked her kidneys. She was diagnosed with WHO class Vb Membranous Lupus Nephritis. It was pretty bad. We drove every other week then once a month from Tampa to Atlanta for about 8 months for tests, doctor visits and treatments that included everything from drugs to chemotherapy! We literally set up a bed in the back of the SUV so she could sleep and be comfortable. I don't even know how many hours I worked on my laptop sitting next to her in hospital beds. It was not a good time but we did make it through it, not without a few more "conditions" being added to her list of diagnosed diseases. They are, in no particular order:

Osteopenia (Thank you steroid treatment of the kidneys!)
Sjögren's Syndrome
Reynaud's Phenomenon
Needless to say, 2004 was not a good year. Lori has not been able to work a day since. Our lives were never the same from that year forward. 
44 years old, 8 years since the Lupus diagnosis, she is now diagnosed with Lupus, RA, Migraines, High Blood Pressure, Fibromyalgia, Osteopenia, Sjögren's Syndrome and Reynaud's Phenomenon.

2005 didn't turn out to be any better than 2004. Lori is diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS). Long story short when she stands for any length of time her heartbeat races and her blood pressure drops. This disease put Lori in a wheelchair. She can no longer walk through a mall or even a grocery store. At 45 we now carry a wheelchair for her everywhere we go.
45 years old. Diagnosed with Lupus, RA, Migraines, High Blood Pressure, Fibromyalgia, Osteopenia, Sjögren's Syndrome, Reynaud's Phenomenon and POTS.

2006 and the Osteopenia advances to Osteoporosis. She is also diagnosed with Trochanteric Bursitis of the Hip as well as Heberden's and Bouchard's nodes. 
45 years old. Diagnosed with Lupus, RA, Migraines, High Blood Pressure, Fibromyalgia, Osteopenia, Sjögren's Syndrome, Reynaud's Phenomenon, POTS, Trochanteric Bursitis and Heberden's / Bouchard's and Osteoporosis.
 

2008. She was diagnosed with Leukopenia with intermittent neutropenia. A blood disorder. One where the treatment was worse than the disease! But the treatment worked, or so we thought.
48 years old. Diagnosed with Lupus, RA, Migraines, High Blood Pressure, Fibromyalgia, Sjögren's Syndrome, Reynaud's Phenomenon, POTS, Trochanteric Bursitis, Heberden's / Bouchard's, Osteoporosis and Leukopenia.

2010. The above mentions "intermittent neutropenia" is now officially diagnosed as Chronic Neutropenia secondary to Lupus. It took a couple of years but it finally won the battle. Lori no longer produces white blood cells like the rest of us. You know those pesky little things that help you from catching colds and stuff. A normal person has a WBC count of 4,500 to 10,000. Anything under 4,500 is low. Lori's hematologist is happy if she comes back with a reading of 2,000. HALF of what would be low for the rest of us is now considered "normal" for Lori. To put it into perspective at around 1,200 they put you in the hospital in an isolation unit. This means Lori's already weakened immune system is even more susceptible to becoming contaminated.

Lori is now 50 years old and she is diagnosed with Lupus, RA, Migraines, High Blood Pressure, Fibromyalgia, Sjögren's Syndrome, Reynaud's Phenomenon, POTS, Trochanteric Bursitis, Heberden's / Bouchard's, Osteoporosis, Leukopenia, and Chronic Neutropenia.

2013 and its time for Lupus to attack the heart. Lori is diagnosed with Pericarditis. Swelling of the lining around your heart.
53 years old. Diagnosed with Lupus, RA, Migraines, High Blood Pressure, Fibromyalgia, Sjögren's Syndrome, Reynaud's Phenomenon, POTS, Trochanteric Bursitis, Heberden's / Bouchard's, Osteoporosis, Leukopenia, Chronic Neutropenia, and Pericarditis.

2014. Last year was the heart, this year it's the lungs. Lupus Pleuritis they call it. Inflammation of the lining of the lungs. Painful and makes it hard to breathe. Lori now has a nebulizer at home and carries a pocket puffer when she goes out. She was also hospitalized with viral meningitis this year and had a bout of Pneumonia that made her miss our first grandchild's first Christmas....
54 years old. Diagnosed with Lupus, RA, Migraines, High Blood Pressure, Fibromyalgia, Sjögren's Syndrome, Reynaud's Phenomenon, POTS, Trochanteric Bursitis, Heberden's / Bouchard's, Osteoporosis, Leukopenia, Chronic Neutropenia, Pericarditis and Lupus Pleuritis. 

2015 & 2016. Happy to report no new conditions have popped up. Knock on wood, we’ve had a couple of good years.

In 2017 Lori started driving a lot more than she has in the past few years.  She’s also was able to go shopping at times without the assistance of a wheelchair or scooter! Those trips are usually followed up by a 2-3 hour “power nap” but at least she can do them now. She babysat for our granddaughter twice a week including many sleepovers where she was able to take Evelyn for small walks or shopping! Unfortunately, the brain fog / cognitive dysfunction really acted up this year. So while the body had a great year the mind not so much…


2018 was a good year. Lori continues to babysit our Grandaughter twice a week. For the most part, she gets through it okay. It typically means a sleep day follows but it’s worth it. We watched our twin grandchildren for a weekend, and she had to sleep for 3 days afterward!

58 years old. Diagnosed with Lupus, RA, Migraines, High Blood Pressure, Fibromyalgia, Sjögren's Syndrome, Reynaud's Phenomenon, POTS, Trochanteric Bursitis, Heberden's / Bouchard's, Osteoporosis, Leukopenia, Chronic Neutropenia, Pericarditis and Lupus Pleuritis.


So far she’s doing “okay” in 2019. Not the best year but far from the worst! Fingers crossed it ends up an uneventful year health wise.

 

Once again, we ask, please help us out by donating to the Lupus Foundation of America today!

Our sincerest thanks,

Rick & Lori

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