Thia year we walk in dedication to our beloved Lori who is no longer with us.

On July 3rd of this year Lori suffered a ruptured brain aneurysm. She fought hard for 21 day but, thanks in part of battleing lupus for 28 years, her body was too weak to win this battle.We lost her on July 24th. It is in her honor we are walking this year.

The Lupus Foundation of America does fantastic work in battling this dreaded disease. Please join us and show your support by donating or walking (or both!). Anything will help. If you would like to join us and walk please register at the link on this page. 

Every year we've walked we've posted "Lori's Story". This will be the final version of her story. 

Once again, please consider donating. With your help we can help make sure other generations don't have to deal with Lupus and it's devasting impact not only on the person who has it but all of the family members who also deal with it.

Rick 

Lori's Final Story

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 was 36 years old when she was diagnosed with Lupus. We had been married 11 years at the time and had two 10-year-old and one 9-year-old boy (and of course 3 dogs). We had to give up our dream vacations of sitting on a beach with our toes in the sand and a drink in our hands. Little did we know just how much this disease would ultimately impact our lives.

In 1998 she was diagnosed with Rheumatoid Arthritis. We were told at the time Lupus can and does affect everyone differently. Rheumatoid Arthritis is however a very common secondary disease that many people with Lupus will develop.

38 years old. Diagnosed with Lupus and Rheumatoid Arthritis.

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 certainly did not help her overall health.  40 years old. Diagnosed with Lupus, Rheumatoid Arthritis, 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, Rheumatoid Arthritis, Migraines, High Blood Pressure and Fibromyalgia.

2004 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. Our oldest were about to enter college with the youngest just a year behind. We were doing what we could to get healthy. Eating right, exercising, Lori even started working out! She did the treadmill on her lunch breaks and was doing everything she could to keep herself from succumbing to the now 5 diseases she had been diagnosed with. It seemed like a good plan however plans don’t always work out as you want them to.

2004 is the year lupus attacked her kidneys. She was diagnosed with WHO class Vb Membranous Lupus Nephritis. It was bad. We found a Lupus Nephritis specialist at the Emory Clinic in Atlanta and then spent the next 8 months driving from Tampa to Atlanta every other week then once a month for tests, doctor visits and treatments that included everything from drugs to chemotherapy! We set up a blow-up 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 and our bond was even stronger. Unfortunately, throughout all the tests and treatments, a few more "conditions" were added to her list of diagnosed diseases. They are, in no particular order: Osteopenia (Thank you many years of steroid treatments….), Sjögren's Syndrome and Reynaud's Phenomenon.  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, Rheumatoid Arthritis, 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. That was almost 20 years ago. I can’t hardly remember what it was like prior to this… 45 years old. Diagnosed with Lupus, Rheumatoid Arthritis, 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, Rheumatoid Arthritis, 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, Rheumatoid Arthritis, Migraines, High Blood Pressure, Fibromyalgia, Sjögren's Syndrome, Reynaud's Phenomenon, POTS, Trochanteric Bursitis, Heberden's / Bouchard's, Osteoporosis and Leukopenia.

2010. The above mentioned "intermittent neutropenia" is now officially diagnosed as Chronic Neutropenia secondary to Lupus. It took a couple of years, but the disease 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, Rheumatoid Arthritis, 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 it's 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, Rheumatoid Arthritis, 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, Rheumatoid Arthritis, 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.

For the next 10 years there were no new conditions. That doesn't mean dealing with the 14 already diagnosed conditions got any easier. It simply means there was nothing new to add. Ironically this is when our 1st of 5 grandchildren was born. I know in my heart it was her love for her new babies that kept her going all these years. They were, without any doubt, the most precious gifts for her. Her life for the past 10 years consisted of grandbabies and sleep. Except for a few trips to Disney World didn’t do vacations, she really couldn’t. She did more and more of her “errands” online since she really couldn’t go out. In the last 3 years 95% of what we bought, including groceries, were delivered right to our house. A day with the kids meant two days in bed afterwards. Our weekend sleepovers meant she spent the next week in bed. SHE WOULDN’T HAVE HAD IT ANY OTHER WAY!!!!  Those kids were her life. She cherished every second she had with them.

Many of our new friends from Anchorage aren’t aware of most of this. Very few of you know what it took for her to constantly have that glowing smile. She was always there to greet every one of you and do her best to let you know just how truly happy she was to see you. And of course, like with a visit from the kids, an HOA party meant days in bed afterwards. But she never let that stop us and encouraged me to continue our social activities even when it was just her and I doing it.

Unfortunately, on July 3rd tragedy hit. We were up at 2:00 am to take care of our new puppy and both went to separate bathrooms to do what all 60+ year olds do when they are up at 2:00 am… She may a strange sound, I asked what’s wrong and she said, “I can’t see, and it feels like my head is about to explode”. Those were the last words she spoke. There was a chance a healthy person could have survived her injury but not someone in her condition. After three weeks, when I sat with the ICU doctor to discuss her prognosis and explained her physical condition prior to the hemorrhage, he came to the determination that, at best she would live the rest of her life in a nursing home and may not ever recover her functions. Two days later she was gone.