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"Let's rally around for Rachel, who needs our support through her journey with Celiac disease, surgeries, and unexpected medical expenses."

The time has come to ask for help for a very special young lady.  This young lady has given her heart and soul to children in the dance world for the last seven years and to students at the middle school level for the last three years.  Rachel is a twenty-six year old who has been trying to hold down a full-time job as well as a part time job while taking college courses.  She has worked with kids approximately 12 hours a day, most days of the week.  This love of children led her back to K-State this past fall where she began her studies to earn her Master Degree in Education with which she hopes to teach children with special needs. She possesses a very strong work ethic even though she is constantly battling her illness and pain.  She has been described by her educational colleagues as a giving, vibrant, outgoing, cheerful, caring, loving individual. Unfortunately, Rachel is traveling a rough road right now as a result of her health, and she desperately needs our help.

         Four years ago Rachel was diagnosed with Celiac Disease. There is no cure for this disease.  Celiac disease is a condition that damages the lining of the small intestine and prevents it from absorbing the nutritional parts of food that are important for staying healthy. The damage is due to a reaction from eating gluten, which is found in wheat, barley, rye, soy, and oats. The exact cause of celiac disease is unknown. The lining of the intestines contains villi, which help absorb nutrients. When people with celiac disease eat foods or use products that contain gluten, their immune system reacts by damaging these villi. This damage affects the ability to absorb nutrients properly. As a result, the person becomes malnourished, no matter how much food he or she eats. The severity of celiac disease varies from person to person. 

Dealing with celiac is an everyday battle.  With this disease often come other health complications.  Before her most recent surgery, Rachel experienced a celiac flare up because she unknowingly ingested gluten. Consequently, this results in fatigue, weakness, pain, muscle pain, bleeding, decreased appetite, bruising easily, itchy skin, mouth ulcers, tingling or numbness in the hands or feet when she wakes in the morning, so much so that she can’t feel her limbs.  At this point, she started losing significant weight due to her body not absorbing the much-needed nutrients, and her Celiac blood panel showed that her numbers were too high indicating that the villi in her small intestine was once again damaged. The reason for her outbreak is because, unbeknownst to the consumer, manufacturing companies change their products and items from once gluten-free to not gluten- free, or these companies are labeling their items as gluten free when, in fact, the products contain traces of gluten. There are no current laws governing product labeling regarding gluten.  Because of this, Rachel went into her recent surgery already weak from the gluten exposure.  Outwardly, one wouldn’t notice the amount of pain that Rachel was enduring on a daily basis before her surgery, but she would describe it as “intense.” I have to share with you that Rachel continued to maintain a smile as she went about her normal workday helping her students that she loves so dearly.  Most people may be surprised that she was in so much pain because she hid it well.   Rachel is one strong woman, both mentally and physically, and it is now that she needs her family and friends to help her through this extremely difficult time. 

          In the midst of her celiac outbreak, Rachel had major surgery on November 13, 2014, for other complications resulting from her Celiac. Healing time for her will be between 4-8 weeks, which means no work or activities.  It has meant many, many hot baths, bed, and pain meds.  Unfortunately, the surgery was a failure and caused more problems.  Her nerve endings around her sphincter muscle were damaged during the surgery causing partial paralysis in her legs, which she had to work very hard to regain.

One may not think that all the meds ingested would have to be gluten free as well, but they do. That is another story in itself!  The pain never goes away, and the doctor said the pain would be with her for two weeks before she started feeling relief, as it is a very painful surgery. Staying on top of the pain is nearly impossible. With that said, there have been many tears and frustration. The healing will be a slow process with this particular surgery.  Her healing time will be twice what a normal person would experience because of her celiac disease.

 

UPDATE August 8, 2015

Since then complications kept arising so she decided to go to Mayo Clinic in Rochester, MN. June 8, 2015.  She returned home from Mayo Clinic July 3, 2015. She was there for three weeks, and the tests were grueling. With having test after test, her body has struggled.  She did get answers, though.   

The Mayo medical team added several more diagnosis to her already long list. With each condition comes a host of symptoms and side effects.  Very discouraging, but we know she will continue the fight. She has now been diagnosed with Fibromyalgia. On some days she experiences a pain level of ten and beyond. She took a 12 hour class in Rochester (not covered by insurance, by the way) to learn about ways to cope with chronic pain and chronic fatigue. She was also diagnosed with pelvic floor dysfunction where the insides below the belly button do not work correctly.  Insurance will not cover treatment for that either. She is working on finding treatment in Wichita first to avoid an expensive trip back to Mayo. Plus, the treatment at Mayo is very expensive, but with a better success rate and more thorough, of course. If only she lived closer to Rochester. That medical facility is remarkable. She was also diagnosed with a yeast infection throughout her entire body. She is working on finding a medication that she can tolerate for this. Her Mayo doctor called her personally about her problem with the initial medication. He continues to call and check up on her weekly.  Impressive!  Her celiac is still active according to Mayo endoscopy, as suspected. This could be the reason for a lot of her discomfort given there is still a lot of damage on her insides, he said, but not the reason for everything.  If only she could have one thing to deal with. He suggested a stricter gluten free diet, but she told him she didn't know how she could possibly do better. He then suggested a short term steroid to help her celiac go into remission. She was also found to be deficient in zinc so now another pill for that.  She is taking 72 pills daily.  She also has an auto immune disease called pernicious anemia, which she already knew. Once you have two or three auto immune diseases, you have to be vigilant for more. She was tested for scleroderma but did not have all of the key symptoms for that so she is to watch for those key symptoms. She tested negative for rheumatoid arthritis and lupus.  She did not have all of the key symptoms for lupus either but again will need to watch out for it.  Good news. She needs to be vigilant for adrenal gland failure and hashimoto as well. She has also been diagnosed with PCO Disorder.  This is a lot for a 26 year old to cope with. She fights deficiency in B-12, B-6, calcium, zinc, sodium, and vitamin D.  Her multiple diagnosis cause some intense symptoms, syndromes, and disorders that affect her on a daily basis.  Some of these symptoms include sweating profusely, extreme sense sensibility (her “super power!”), brain fog, chest pains, achy body, fatigue, weakness, pain, muscle pain, bleeding, vision problems, disorientation, decreased appetite, severe constipation, defective diaphragm breathing (chest pain), frequent muscle reconditioning, dry mouth, stomach erosions, bruising easily, several gastritis asprits, chronic inflammation, migraine tension headaches, itchy skin, mouth ulcers, brain cerebrum expanded and over- active, tingling or numbness in the hands or feet. Syndromes tend to vary but are just as intense. One of them is central sensation syndrome, which causes decreasing blood flow in the brain and leaking of spinal fluid. The disorders are very overwhelming in her eyes. To name a few, over-active albdynia, excessive hyperalgesia, TMJ, restless leg syndrome, insomnia disorder, sympathetic stress disorder, substance p spinal fluid disorder, cognitive behavior disorder, nociceptor nerve endings, myofasicial pain, connective tissue disorder, and chemical imbalance with neurological chemicals.  All of these things are connected to one another.  It is a cause and effect type of deal.   

So there we have it. She will never give up. Each day is going to get better. Her doctor told her that it is not curable, but we can get her feeling better. It is manageable, but it is going to take some time and work! In that there is hope. She continues to do volunteer work with kids, and that has become her salvation! She is a very strong young woman, and we are very, very proud of her. Daily, she feels crappy on the inside, but she puts on that beautiful smile and sucks it up and treks on! She loves to live life, to enjoy life, to have fun! She still has her great sense of humor and her impeccable work ethic and desire to get involved!  Thanks to all of you who have supported her through these trying months. Tomorrow is a new day! We now know, thanks to Mayo Clinic, what all we are facing. We have answers! We are so glad she is back with her family where we can all enjoy one another, and take care of one another. Come visit us anytime. Just know everyone eats gluten-free in this house! Thank you all for your kindness!

 Rachel has been unable to work since November 4, 2014, and will be unable to work for an unknown amount of time due to several of her doctor’s orders. Her short-term disability has ended.  Bills continue to pile up, from medical bills to medications to more medical treatments to special gluten-free foods, and much more.

What can you do to help Rachel?  If you would pray for her on a daily basis, share her story with all the individuals and families that she has impacted, help her out when she needs it because those who know her well know that she won’t ask for help, send her emails, notes, cards and words of encouragement, that would be most appreciated.  And, of course, as is the purpose of this GO FUND ME site, contribute to her ever-increasing bills and expenses.  If you are not able to help financially, perhaps you know of an organization that may be able to provide assistance.

             Justine Sperber, one of Rachel’s colleagues, stated, “I have known Rachel for just a mere one year as we work together assisting students with special needs, and she has forever changed my life in such a positive way that it is hard to put into words. She is an encourager, a leader, a motivator, an outstanding mentor, and a wonderful person to be around. Throughout these last few months, I have watched her endure severe physical pain. To see her go from her cheerful, excited self to not being able to get out of bed due to her pain has been heartbreaking for all of us who work with her daily. As her friends, we have brainstormed ways in which we can help Rachel through her trying times, and we have decided to set up a financial fund on the website called “Go Fund Me.”  If you can find it in your heart to help Rachel obtain the funds to get back on track financially, it would be most appreciated.  We are all looking forward to seeing this vibrant, young woman back to her healthy self.  As one of Rachel’s best friends, I am running an online fundraiser called THE RALLY FOR RACHEL WEBER FUND sponsored by the GIVE FORWARD PROGRAM with the goal being to make a difference in the life of a person in need.  If you can give a gift or spread the word with me, I would be very grateful.”

 

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