Butterfly Warrior

Summer is Here!

Two-thirds of people with lupus have increased sensitivity to ultraviolet rays, either from sunlight or from artificial inside light, such as fluorescent light, or both. Whether or not you are photosensitive you should limit your exposure to ultraviolet rays, especially outdoors, as excessive exposure to the sun can cause lupus to flare.

Everyone with lupus who is going to be outside for more than a few minutes should use a sunscreen with a sun protection factor(SPF) of at least 30 that blocks both ultraviolet A (UVA) and ultraviolet B (UVB) rays. Sunscreen should be applied thoroughly, especially to your neck, temples, and ears -- areas that are often affected by lupus skin problems.

Wearing proper clothing helps, too, such as broad-brimmed hats, long-sleeved shirts, and long pants. If you spend a large amount of time outdoors, you should wear clothing made of sun-protective fabric. Sunbrellas, which are umbrellas made with sun-protective fabric, are also available.

Since UVB rays are most intense between the hours of 10 a.m. and 4 p.m., you should try to plan your outdoor activities for early in the morning, late in the afternoon, or in the evening. Also be aware that UV rays are stronger at higher altitudes and when they are reflected by snow or water.*

 Summer is the time of year that most everyone loves. Time for travel, BBQ's, parties, weddings, picnics, camping, swimming, friends, and families.  I absolutely love the feel of the sun on my skin, the warmth, and the feeling of freedom it gives me. However it's also the time of year I have to pace myself the most because summer is also outdoor concert season.

I love live music! One of the best feeling in the world is being outside listening to great music, singing along if you know the words, having a drink or two, and enjoying it with people you may have just met.  The atmosphere is awesome at live shows. We are all there for the same reasons; to hear great music and enjoy ourselves.  Some great memories have been made for my daughter and myself at these shows. We've also made some wonderful lifelong friends that we met over our love of live music.

Too much time in the sun is typically when Lupus rears its ugly head. The sun drains me instead of recharging me like it used too.  If I have too much sun exposure; it may be days before I can get out of bed. My scalp breaks out in a scaly rash, my joints and muscles ache, I get chills, fever, and  it makes me very weak.  I have  photosensitivity even with sunscreen and protective clothing.

 I still enjoy the summer, I just dont spend as much time outside as I would truly love too. Whenever I get stubborn I have to remind myself that 10-15 minutes longer in the sun isn't worth the weeks in bed without sun or summer fun if I go into a lupus flare. I miss being able to run, jump, and play but I can see the sun from anywhere. I dont have to be standing out in it to enjoy it!

 Have a save and fun summer- please dont forget to protect yourselves!

  www.lupus.org*  

Keep Fighting

 Lupus Awareness Month is over until next year. Unfortunately it isn't that easy for me; I still have Lupus. For the other 1.5 million people out there like me, nothing has changed. We still live with this illness.

I have struggled over writing this for the last couple of days. This past month it has been my goal to help our friends, loved ones, acquaintances, and complete strangers understand a bit more what we deal with on  a daily basis. I hope I've been able to accomplish that goal.I have never wanted sympathy or pity; I would like empathy and understanding.

 I want my fellow Lupus warriors to see that we are NOT a burden. Lupus is the burden that we carry. One of the other important things I wanted to get across is that our lives aren't over when we are diagnosed. Our lives do change when we are diagnosed; there is no denying that. We may not be able to the same things we once were but we are still able to live full lives.

 Even though we have the same disease, it is still different for all of us. I can tell you from my perspective, I have severe Lupus and I still work and play. I need to rest a lot more than I did before I was diagnosed, but I can still be me. When I go thru a rough patch, I have my family, friends, and extended family to lean on. Find your support system, if there isn't one near you, start one.  Don't go thru life feeling as if you don't matter, because you do.

Don't let Lupus take over your life, it can share but it can't have it all. Living with Lupus takes unimaginable strength and I'm proud of us all for being able to show our strength. Keep up the fight.

DIY Medicine

  A few years ago I had pain in my left side that was off the charts. I have a high pain tolerance, so I ignored it for a few days. Of course it continued to get worse. I finally gave in and let my husband take me to the ER. As soon as I disclosed my medical history, I knew that they weren't going to look very hard for my issue. They did a CT (cat scan) of my abdomen and said "Its not your appendix so it must be Lupus. Follow up with your Doctor." The pain didn't get any better and a few days later my husband made me see my PCP. When it was all said and done, I had an ovarian cyst that had twisted and pinched off.

 Because of the experiences that many of us with Lupus have had with the ER and urgent care clinics we sometimes chose to consult our computers when we get new symptoms, pains, and aches. There are plenty of search engines out there, Dr. Google, WebMD, Right Diagnosis, to name a few of them. They are chocked full of information that can help or hurt in our search to find out what the problem is.  

According to a recent study, one in four British women has misdiagnosed themselves on the Internet. Researchers found that women with real health concerns are twice as likely to go online for advice than they are to ask a doctor, their friends, or even their mothers, especially where embarrassing symptoms are involved. In that same study not only did they misdiagnose themselves, the women also bought medicines based on the diagnosis and tried to treat themselves.*

 To test the study I put in a very simple symptom a search engine; peeing at night. The following is a list of the Top 10 causes the search gave me:

Enlarged prostate

Benign prostate hypertrophy

Prostate cancer

Prostate disorders

Bladder disorder

Irritable bladder

Kidney failure

Chronic kidney failure  

Diabetes

Hyperparathyroidism

  The search parameters I used were pretty broad, but I was quite surprised that my  top 4 were all prostate related. In all fairness I didn't enter that I was female, but it produced the list without asking me to clarify or add any other information. The site has links to home testing, OTC (over-the-counter) medicines, treatments, etc. but I didn't find a place to enter that I have Lupus.  The causes I was given are all quite serious diseases. But the search engine doesn't play 20 questions like my physician does. The cause of my nocturia (night urination) is really very simple, I drink 100+ ounces of water a day.  Even though I'm done drinking water by 6:30 pm I still go to the restroom quite frequently.

  DIY medicine can help narrow down the list of possibilities for new aches and pains, however it can be very misleading and dangerous also. Before a proper diagnosis can be made tests are typically needed. Make sure you're consulting your physician(s) prior to starting any medicines that have not been prescribed by them.

 

 

 

http://www.zdnet.com/blog/health/dr-google-misdiagnoses-one-out-of-four-women/478 *