10 years later

So this summer marks my 10th year of having solar urticaria.  Science has advanced but the FDA has not. I basically gave up on conventional medicine.  


Curious if anyone has any success with Low Dose Naltrexone to help Solar Urticaria? 

Positive

Everyone has their struggles. At times, it is difficult to get out of bed. 

But, right now, I don't want to look at my struggles. 

This weeks positives:

Working with wonderful caring people.
House is starting to be decluttered.
Window project is finally all most completed.
My husband took care of me while I was sick this weekend.
Kids who like to cuddle with me.
Cloudy days

Spring

Spring is the time that I  go outside with short sleeves not paying attention to the fact that I am allergic to the sun.   And then I get hives.   Why do I keep doing this knowing that the result will be bad.

I belong to a support group on yahoo for sun allergies.   I do not post a lot but they keep me from thinking that I am crazy. For example, the sun makes me super tired. I would think this was just my imagination but so many others post saying they get super tired with sun exposure.   I know most of you are thinking that you get tired with too much sun and are not allergic to the sun.   I am here to tell you that it is different and can happen with only seconds or minutes of sun.   I have only had SU since 2007 and I know the difference.

I have been researching ways to design my backyard.  I saw the cutest framed mirror outside.  I thought to myself that I would love that on my shed.  Then reality it me.  Considering that I can get hives from the sun bouncing off the grass and hitting me while in the shade, the last thing I need is mirrors outside. 

hives from fire????

I always wondered why my feet and sometimes legs got itchy next to a fire-  I never really say much as it is not too bad  and felt a little weird given it was at night and no artificial lights around either.-

I wondered if a campfire let off UV-  it may or may not but the visable radiation would be enough for me.

I got this info off  the following website   www.campsundown.com  ( please go support them if you can- they provide camp for kids who have XP  and I believe other sun allergies)


Dr. Kraemer -
Statement re: UV from fireplaces - R. H. James
(NOT official FDA position)
A fireplace produces an optical radiation output similar to a low temperature `black body', which has a smooth spectral curve with little or no ultraviolet being present, significant infrared presence, and some visible radiation. For a fire, there will be imposed upon this `normal' `black body' type of radiation output some transient effects (hot spots and `flares') based on variations in the fuel source - some having a narrower spectral band output. The type of fire (and physical size of the fire) can have a dramatic effect on the optical output - different types of wood burn with different intensity - gas fireplaces will produce different spectral outputs than wood. At the beginning of the fire's life, the radiation output will be low - it increases as the fire gets hotter, and coals develop - it decreases once again as the fire dies out. An individual can decrease his exposure by simply moving to a greater distance from the fire. All of these parameters make a description of the optical radiation output from a fire very difficult indeed.
I believe that little or no ultraviolet radiation can be expected from wood fires. The most significant output from wood fires is in the infrared, with some visible radiation also present. I do not know of any measurements of wood fires which have detected any ultraviolet radiation output at reasonable viewing distances from the fire.

I know this is not very detailed, but if you wish to discuss this further, please let me know.
Bob

raining days and mondays

Ok, so its Wednesday  but, raining days do not get me down.  I love them!  There is less of a chance that I will get a hive with all that cloud coverage.  Though you would be surprised what UV rays still get through even when its raining. I know the UV is shining through before you even see the sun let alone I don't get to the point of sunburn.  Within minutes I can get  hives- sometime within seconds.   On Facebook, people always complain in their status about raining days.  It reminds me of a story in my bedtime Christian books I had as a child.  The child in the story has been praying to God that it wouldn't rain because she was going to have a birthday party outside.  But it rained anyway.  The child didn't understand why God didn't answer her prayers. It was pointed out to her that there had not been rain for a while and perhaps the farmers also prayed for rain. 


So, when you complain of rain, please think about all the good rain does.  It gives us drinking water, and waters our plants for food and beauty.  It allows me to not worry about the sun.   So here's the deal: You stop complaining about rain and cloudy days  and I won't complain about your lovely sunny days.  I know the world needs sun even if it is harmful to me.

 

I'm not a vampire

The first definition that popped up for vampire on my Google search:
(folklore) a corpse that rises at night to drink the blood of the living

Sorry folks, but that is not me.    Why do I get mistaken for a blood sucking corpse?  Well, I am allergic to light.  Yes, Light!  UVA, UVB and visible light (light bulbs).    I have been allergic since July 12, 2007.  It is called solar urticaria and it is life threatening.  I get hives and if I do not remove myself from the light source, I will go in shock.  I do not know why I have it and yes it is rare. No, I do not know if you can catch it  or if my children will get it.   No one really knows anything about solar urticaria.

I used to write about it all the time on Myspace back when Myspace was popular. It was who I became when I spiraled  into my identity crisis.  Total lifestyle change.  And then I was tired of  being just a Solar Urticarian. I am so much more: a mother, a wife, a Buddhist, a hard worker, a crafter,  a person.  So I stopped writing about it as much.  I rarely talk about it with people.  I really don't have to tell people. I want to be normal.   And I was maintaining pretty good for a while.  And then I had to have surgery.  I was beyond nervous and scared.  But oddly not of the surgery  but of the lights.  I was scared of the possibility of being "under" and not able to tell if I was reacting to the lights.  I imagined breaking out in hives under the bright lights, going in shock and dying.  

So I was more vocal about my allergy to the medical staff. I told everyone I came in contact with at the hospital.  And every time I mentioned it, the staff person looked at me like I had three heads.  I don't even think they took me seriously.  They even turned more lights on around me, which resulted in getting hives.  My hubby then turned off the lights. They didn't believe me.

This is why I started this blog.  If even the medical staff are not aware of solar urticaria, then clearly I am not doing myself justice by keeping quiet.  I am going to promote the hell out of my condition!  

So, here I am world!  Get used to me