Apr 30, 2015

The Face of Migraine Disease

 
 
 I use the following on my face in this order: Trader Joes moisturizer with spf, e.l.f. tone adjusting face primer (green), Loreal BB cream in fair, physicians formula loose mineral powder, rimmel lipstick as both blush and lipstick. I wash with witch hazel. If I feel I need more coverage I add Loreal magic nude liquid foundation AFTER the BB cream

Update on my pinched nerve

Update on my pinched nerve in my neck.  I saw Dr Hall and he said that at this point I'm avoiding surgery by a hair.  So I still have to take it very easy and he told my to stop eating all wheat, corn, and anything with high fructose corn syrup.   This in addition to reading labels for al my migraine triggers.  BUT the easiest way to do this is to only eat fresh foods.  I don't eat a lot of premade to begin with but I do use commercial salad dressings and I love almost all forms of pickled veggies.


Daniel in the white shirt, back to the camera, taking Krav Maga

Sarah holding Granddaddy's cat April.  April LOVES Sarah.

Apr 27, 2015

The Face of Chronic Migraine Disease

This what migraine disease has done to my face. So thankful for makeup that does a pretty good job of masking it without feeling like I've spackled my face.  Tomorrow I will try to remember to post photos with makeup on and the products I use.
 



 

Apr 20, 2015

Will YOU share and help?

Ok Folks. What is UP? Samantha's fund raiser has been shared 245 times yet only 9 people have helped.
Is this event not "flashy" enough? Is It not dramatic enough?
How's this for drama? Samantha sleeping in a bed like each of us do at night, causes her to run fever a lot of the time. Remember the lovely and short lived NC snow storms we have? It is dangerous for Sam to bundle up and go outside to sled with her friends because her body can't self regulate and her temp... will drop extremely fast and she can go into hypothermia.
There is much more that I could tell you but will save for another post.

This family are personal friends of ours. I do NOT share fund raisers that I feel are frivolous. Donations to Samantha will mean she can continue to get the medicine, equipment, therapies etc that she needs to live.
I was overwhelmed with the support my friends showed us and continue to show us.
If you want to give and remain anonymous then contact me and I will give you the address to mail a money order.
Please share
Please pray
Please Give!
 

Apr 4, 2015

Favorites

Post-It notes are one of my favorite inventions.  They are so versatile.  I use them in sewing, crocheting, reading, planning, remembering, listing, and on it goes.

I do NOT think however I would use them in home decorating.

decorating? Umm, NO!


Apr 3, 2015

This is Samantha, Would you share and help?



This is Samantha.



 An 18 year old dancer, musician, artist, lover of animals, & anti bullying advocate.  In many ways she is your typical teen.  She likes hanging out with friends, painting her nails, shopping...In many other ways she is not.  The following was written by Sam's mom and my dear friend Jodie.

Sam was born with  static encephalopathy and a unique,  extremely rare chromosome disorder. Because it is so rare there have been no studies done on it and no name for it. The Genetic Drs are calling it "Xq25-Xq26.3 chromosome duplication disorder" because that is the link of her duplication.

 Due to this genetic disorder she has many other health issues and is really small. For example her foot is a size 2 kids, its as long as my hand and her hands are small as a toddlers. 


 She has Secondary Mitochondria, cerebral palsy, oral motor apraxia, asthma, gerd, Bile gastrisis, learning disabilities, sleep apnea, autonomic issues, Thermal dysregulation, and other health issues.

 As a baby she grew really slowly and had a diagnosis of failure to thrive, and was delayed in all of her physical abilites. She had many doctors, testing, and thearpies. As time went on we adjusted and she learned things, even if that process was and is slower than others.

   Now she is a beautiful 18yr old, kind and caring teenager. Biologically she is 18, but because of the delays and static encephalopathy she is more like a 12 yr old. Within this last year she has had new medical issues emerging. The doctors believe these issues stem from the Genetic abnormalites. We just have to try and deal with stuff as it appears. 

     We just took a trip to Wisconsin Childrens hospital to see speacilists, which was an out of state trip for us. They put her on many Mitochondrial supplements, like Coq10.

 She was also diagnosed with Thermal dysregulation. She doesn't sweat and her body does not regulate her temp. very well. She has to be extra careful of the heat and the cold. So she doesnt get heat stroke, or hyperthermia. Just taking a nap under covers, causes her to run a fever. We need to order her a cooling vest and a cooling blanket which aqre expensive.

     She has episodes where she loses time and what is going on around her, leaving her confused and unsure what just happened. The neuro-surgeon we saw and her local neurologist believe she may be having seizures that are deep enough in the center of the brain that they aren't showing up on the EEG tests. So they are sending us to another specialist at Duke University. They said they may do a special MRI or a PET scan. The large gaps of missing time really concern us and her doctors. So we are trying to get to the bottom of this issue.

      She also having a lot of trouble with her stomach, eating, and digestion. She has more tests coming up for this. Depending on these tests, and if she continues to lose weight, they are talking about a G-tube (feeding tube) in the future. They have her on nutritional drinks "neocate splash" to hopefully help her maintain her weight, and a high calorie diet. She been dealing with vertigo, migraines, nausea, abdominal pain, body pain also.

    Because of her static encephalopathy and learning disabilities, Samantha is delayed and has to attend some thearpies and counseling. Pyscologically there is a lot to deal with. Any help we can get her to make things better for her to deal with daily life issues and situations would be great. We just want her to be as happy and healthy as she can be. To live the best she can later in life as a productive member in our society.

     This is the best I can do to sum up the issues without going on for many more pages. A child with disabilites needs many services and it can be overwelming finacially, no matter how much you do to keep up with it. Her mitochondrial supplements alone are extremely expensive and not covered by insurances. Not to mention, copays, hosptial bills, etc. I thank you so much for taking the time to read some of her story. If you can donate to our fund to help Samantha get the continuing care that she needs we thank you sooooo much. Sharing the link to this page, so others can see it is also a great help. Thank you


Please share. I know there are many, many needs to fill. I certainly cannot meet them all. But GOD can! Quite often He uses us to bless someone.
As you pause this weekend to reflect on our Saviors perfect sacrifice, would you consider sharing this post and making a donation to help Samantha and her parents pay for her very expensive medicine and medical treatments?

Samantha Medical Expense Fund Raiser