walktoendlupus

It is that time of year when I start to raise money for the San Francisco Lupus Walk.  This year my goal is to raise $7,500.

As many of you know, I have been battling lupus for the last 14 years of my life.

When I was first diagnosed things were pretty much fine apart from the occasional aches and pains. But a few years ago things took a turn for the worse and I nearly died. During that time I suffered from a bout of transverse myelitis that affected my spinal cord causing permanent nerve damage to my lower half. I also spent a good amount of time in the hospital with severe brain seizures. All of this ended with me having chemotherapy to get the disease under control. Since then I have been fighting on a daily basis to recover from all of the damage that has happened to my body.

Every single day I am reminded of how much lupus affects my life – from extreme fatigue, difficulty remembering things, being in chronic pain or taking enough medications to kill a small elephant. Lupus is something I have to live with because there is no cure. And that sucks.

I really hope that you’ll consider donating any amount to help find a cure for this awful disease. It is oftentimes overlooked for other causes with more prestige, but it is no less important or devastating for those of us who are suffering a life sentence with it.

I am blessed to have had the support of my amazing friends and family who make me smile on the worst days and keep me going. Thank you so much for being here for me. I love you all!

Donate Now

Update as of October 17th:  We are #1 so far.  Keep up the great work, Team Lupies and all of you who donated to the cause.

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lupus empire state building

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If you are looking at the Empire State Building this evening (Wednesday, October 8th) and notice that it is glowing purple then you can think about moi…

This evening the Lupus Foundation of America Global Ambassador Julian Lennon will “flip the switch” and light the world-famous Empire State Building tower purple to call for increased awareness and investment in lupus research.

Lupus Foundation of America – Support Lupus Research.

 

lupus

The most common symptoms of lupus, which are the same for females and males, are:

  • Extreme fatigue (tiredness)
  • Headaches
  • Painful or swollen joints
  • Fever
  • Anemia (low numbers of red blood cells or hemoglobin, or low total blood volume)
  • Swelling (edema) in feet, legs, hands, and/or around eyes
  • Pain in chest on deep breathing (pleurisy)
  • Butterfly-shaped rash across cheeks and nose
  • Sun- or light-sensitivity (photosensitivity)
  • Hair loss
  • Abnormal blood clotting
  • Fingers turning white and/or blue when cold (Raynaud’s phenomenon)
  • Mouth or nose ulcers

How many signs and symptoms of lupus do you have?  I have had pretty much all of these at some point or another and sometimes all of them combined at the same time.  Ugh.

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The Lupus Foundation of America and Eli Lilly and Company released results from a new survey that sheds light on the lupus journey and the challenges not only for those living with lupus, but also for lupus caregivers. The UNVEIL study, which involved over 1,000 people with lupus and lupus caregivers, highlights the devastating impact lupus has on all aspects of life including family, work, finances, treatment experiences and overall quality of life.

“Throughout the course of their disease, people with lupus experience significant symptoms such as pain, fatigue, depression, cognitive issues and physical impairment that impact every facet of life,” explains Sandra Raymond, president and chief executive officer of the Lupus Foundation of America. “Despite these devastating complications, lupus can be hard for others to see because there may be no visible symptoms. The UNVEIL survey provides the public an opportunity to see how life can be interrupted by lupus and why we need everyone’s help to fight this cruel disease.”

The Lupus Journey Often Begins With a Long, Complicated Path to Diagnosis:

  • On average, it takes nearly six years for people with lupus to be diagnosed from the time they first notice their lupus symptoms.
  • A majority of people with lupus surveyed (63 percent) report being incorrectly diagnosed. Of those reporting incorrect diagnosis, more than half of them (55 percent) report seeing four or more different health care providers for their lupus symptoms before being accurately diagnosed.

The Severe Impact of Lupus Proves A Challenge to Treat:

  • On average, people with lupus surveyed take nearly eight prescription medications to manage all their medical conditions including lupus.
  • Of the 23 percent of people with lupus who experience severe lupus flares all or most of the time over the last three months, 40 percent were admitted to the hospital at least once during the past 12 months, with an average stay of 10.5 days

Lupus Interrupts Every Facet of Life

Work-life

For the majority of people with lupus surveyed (89 percent), lupus impacts their work life.

  • More than half (55 percent) of people with lupus surveyed whose work is affected are working part-time, intermittently or are unemployed because of lupus.
  • Almost three-quarters (74 percent) of caregivers report that caring for someone with lupus has an impact on their work productivity.A large proportion (41 percent) of caregivers surveyed are only able to work part-time or intermittently, or are unemployed, with nearly half (45 percent) of those indicating caregiving responsibilities being the reason. In addition, 60 percent note they spend 16 or more hours per week helping loved ones with lupus.

Family life/Daily Living

  • More than 75 percent of caregivers surveyed help a loved one with lupus with daily activities, such as cooking, shopping, household chores and providing financial help.
  • Eighty-four percent of people with lupus surveyed indicate they feel they are a burden to their family and friends due to their inability to perform daily activities. In addition, 94 percent indicate that lupus interferes with their ability to enjoy life.
  • Nearly three in four people with lupus surveyed (76 percent) said fatigue limits their ability to participate in social activities. For caregivers, nearly half surveyed (49 percent) replied that caregiving responsibilities impact their ability to socialize with friends.

Mental Health

  • The majority of people with lupus surveyed feel anxious (90 percent) and depressed (85 percent) due to their lupus.
  • More than 94 percent of caregivers surveyed experience increased anxiety and stress in relation to their caregiving, worrying that their loved one with lupus will become sicker.

“Lupus goes well beyond joint pain and fatigue. For me, it has derailed my life and impacted not only me but everyone around me,” said Wendy Rodgers, a California woman living with lupus. “Initiatives like this take us one step closer to helping the public better understand the needs of people with lupus, as well as those who care for loved ones with the disease. The more people know about lupus, the better support there will be for those living with the disease and the sooner we can conquer it.”

 

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Technically lupus myelitis is transverse myelitis that is caused by lupus.  This is one of the disorders that I came down with, so I thought I’d share a little bit more.

Transverse myelitis is a disorder of the nervous system linked to inflammation of the spinal cord. It is very rare, affecting approximately 1% of patients with lupus.

Initial symptoms usually include localized lower back pain, sudden paresthesias (abnormal sensations such as burning, tickling, pricking, or tingling) in the legs, sensory loss, and paraparesis (partial paralysis of the legs). Paraparesis may progress to paraplegia (paralysis of the legs and lower part of the trunk). Urinary bladder and bowel dysfunction is common. Many patients also report experiencing muscle spasms, a general feeling of discomfort, headache, fever, and loss of appetite.

As with many disorders of the spinal cord, no effective cure currently exists for people with transverse myelitis. Treatments are designed to reduce spinal cord inflammation and manage and alleviate symptoms.. Physicians often prescribe anti-inflammatory corticosteroid therapy soon after the diagnosis is made in order to decrease inflammation and hopefully improve the chances and speed of neurological recovery.

Commonly experienced permanent neurological deficits resulting from transverse myelitis include severe weakness, spasticity (painful muscle stiffness or contractions), or paralysis; incontinence; and chronic pain. Such deficits can substantially interfere with a person’s ability to carry out everyday activities such as bathing, dressing, and performing household tasks.

Recovery from transverse myelitis usually begins within 2 to 12 weeks of the onset of symptoms and may continue for up to 2 years (and in some cases longer). However, if there is no improvement within the first 3 to 6 months, complete recovery is unlikely (although incomplete recovery can still occur, which underlines the significant need for aggressive physical therapy and rehabilitation).

Transverse myelitis that is related to lupus may relapse once treated, so you should work with your doctor to track and manage any symptoms you may have.