Beauty of Love

Let me start of by saying I am sorry I was unable to share new autoimmune diseases through the month of November. It has been a roller coaster of tears and joyful moments. Let me share with you what has been going on.........it will make you smile.

Holly and I grew up just like normal siblings do. We stole each others close, argued about having to hang out together and yes, she had a little temper and kicked a whole through my bedroom door because I hid her chewy sprees!!!!!!! Thinking about that makes me laugh so hard!!!! Holly and her chewy sprees and skittles, those were her weaknesses as we grew up. As we got older and I entered high school and Holly was in middle school the fights were more emotional between the two of us. I contribute that to hormones in teenage girls! 

When I became a senior in high school Holly moved into the high school as a freshman. At this time I actually saw my Holly as not just a sister but as a friend. We were both cheerleaders, had practices together and we even dated brothers, hehehehehehe!!!!! Of course we still fought and we did this at school sometimes but nothing to bad. Holly was also my protector and she became my voice when I would get picked on. You would think that would be the role of a big sister but you see, I was soft spoken, never wanted to fight and Holly knew that. We attended dances together. Holly was on homecoming court in the fall and I was on homecoming court in the winter. My senior year would have meant absolutely nothing to me if it weren't for my sister. 

Let me tell you a little bit about my sister and who she has become over the years. Holly went to school and has her bachelor's degree in psychology and went on to get her master's degree. She is brilliant and has used her education in every job she has had and she is always confident with her work. She married Russ and they had a beautiful wedding I was apart of. A few years later I had a package from Holly delivered to my door. She had just been on vacation so I really thought she sent me a treat from her travels. When I opened the box Holly told me she was pregnant through the onsie! I was going to be an aunt!!!!! A few more years later she called me while we were at one of Tim's mountain bike races and asked if I was ready to be an aunt again!!!!!!!! Holly has grown effortlessly into her roles as a wife and as a mother. The beauty she shows in her face when she talks about her family is something I rarely see from others. She is truly happy and complete with her amazing husband and her two angels that she loves to death!!!!! 

A week ago Holly put on her big girl pants and settled into the hospital. She had a headache but that was not why she was there. You see, one of our closest and dearest friend, Todd, has a kidney disease and last February they tested family and friends. Little by little the list got shorter and shorter. It seemed like no one was going to be a match. In the beginning Holly wanted to get tested but as long as Mia was breastfeeding she could not be tested. Once Mia was drinking from a cup Holly started the process. Little by little she had tests done, repeated blood work and 24 hour urine tests. We still were not sure if Holly was going to be a match. If she was a match they would call her in a few weeks to set up a body scan and that will indicate she is a match. A few weeks later Holly received the call for the scan and in the end she was a match for Todd. Holly wanted to donate one of her kidneys to Todd. It took her a day or two to tell Kim and Todd but she eventually did and it was a very emotional moment in their lives. The date of the operation was scheduled for November 20th. When they checked in their rooms were very close and so I warned them not to party tooooo hard or else they will kick them out!!!!! November 20th was a beautiful day. The operation was a success and our families are truly connected. They are both home and still recovering but they are both doing amazing!!!! 

I always knew Holly would do amazing things with her life and would make wonderful choices along the way. In this one moment everyone could see the sister I love and the sister I see not only with my eyes but truly see her with my heart. When I asked Holly how she felt once she found out she was the downer she just simply stated, "This not something I want to do but it is something I have to do." She knew she held the gift of life Todd needed. Todd has done so many things for our family and we have known them from the moment we were born. In true Holly style she kept everything very private during this process. She didn't want to be called a hero because according to her she is not. She just wanted to have it done and know that Todd will be ok. 

Holly is my sister, my best friend and a strong individual. So, Holly you are my hero not just because of the surgery,  you are my hero because you give and love so many around you. You never ask for anything from anyone. You give freely and love unconditionally  Those are the reasons I must say, Holly I love you, adore you and you are a hero in my book!

Scleroderma

Scleroderma is another rare autoimmune disease that most people have not heard of. Like so many other autoimmune diseases it is very hard to diagnosis. It can take years and will affect every individual in different ways. It can be a brown spot on your skin all the way up to complete organ involvement. It is very tough on the individual and their families because it is rare and the medication used, Methotrexate, is often times harder on the body than the actual disease itself but it is necessary in order to help control the progression of the disease itself. Please take a moment to watch the video and educate yourself on this rare autoimmune disease and feel free to go go the the website listed for more information on Scleroderma.

http://www.scleroderma.org/site/PageServer#.UKFF0uTAeSo

Multiple Sclerosis

Each week 200 individuals will me diagnosed with Multiple Sclerosis. I am especially touched by this video and thought it captured the importance of research, compassion and love. Tricia's words resonate what we all feel when we are dealing with an autoimmune disease. The simple joys in life that most people have can be a struggle for others. Having a family, walking and simple tasks such as driving can really be affected and all it takes is for one of these normal functions to be taken away and our sense of self is altered for the rest of our lives. But, as you see here, people with autoimmune diseases just want to be normal. Live a normal life but we no longer can do that without the assistance of others. Research is vital when it comes to these diseases. Educating others will inspire the younger generations to help fight a disease that will continue to affect so many.

http://www.nationalmssociety.org/index.aspx

Peripheral Neuropathy

Over the last few months one of the doctors I saw was a neurologist  I went to the neurologist because I have been off balance for some time, I lose function in my hands and develop numbness throughout my hands and feet. They test your ability to feel pain and the doctor classified mine as stocking glove syndrome. After talking to him for sometime he explained to me that due to my autoimmune disease some of my nerves have been damaged. This can cause a disruption between the nerve and how it feels and deals with pain. I do not feel pain like most people. I feel it but for me it can be at higher level. For example if I am not feeling well I may describe my pain as my skin hurting. This is true. My skin literally hurts. Breezes outside causes pain and even just wearing clothes can hurt. Some nights the blankets on me just weigh me down and cause the skin to hurt. Also I have issues with feeling my feet. The doctor told me that could be why I tend to fall more often. He told me I can not feel the actual ground under my feet like most people do. Neuropathy is very scary for the patient and very painful. It takes a lot of persistence from the patient to convince the doctor to test for this disease. If you have other diseases they may try to categorize this pain type as being normal because of your underlining condition. So, remember you are your own advocate and it is you that will be persistence and you will make the doctors listen to your pain!!!!

http://www.neuropathy.org/site/PageServer

Lupus (SLE)

I know you are not surprised that I am posting about Lupus. Lupus is a life changing autoimmune disease that can result in your immune system attaching your own healthy tissue. Lupus is different for every sing patient and treatment plans are designed to treat each individual and their symptoms. This year for the first time in fifty years a new medication was introduced to the Lupus community. Fifty years!!!! This shows that we need to keep pushing for research when it comes to this disease. The statistics show that you will know at least one person with Lupus in your lifetime. So, for the one you may know or will meet in the future, educate yourself and help those around you.

                                                  

                                                   http://www.lupus.org/newsite/index.html

Churg-Strauss Syndrome

Chrug-Strauss Syndrome is very rare and very hard to diagnose. Most diagnoses are a result of the actual patient doing research and presenting it to their physician. Once this syndrome is diagnose or if a doctor feels it is a possibility, the patient will need to seek immediate help and see multiple specialist due to the fact that it can involve so many different organs.

                                                       http://www.cssassociation.org/

Chron's Disease

I have a very special friend who has Chron's Disease and I know that she will struggle for long periods of time before her body will allow it to start a recovery process that we know is temporary. Here is an educational video. It is one of three so please feel free to go to YouTube to see the other two parts.

http://www.ccfa.org/what-are-crohns-and-colitis/what-is-crohns-disease/

Celiac Disease

Celiac disease really changes the life of the patient and their family. Patients will have to change their eating habits and what they come in contact with. Hear you will hear a doctor explaining the disease on The View!

                                                              http://www.celiac.org/

Rheumatoid Arthritis

Rheumatoid arthritis is a very painful disease at times. It can be diagnosed as many other diseases but eventually it shows it true self and diagnosis begins.

                                              http://www.arthritis.org/rheumatoid-arthritis.php

Vasculitis

Here is a wonderful video on vasculitis! This is from an actual patient so you will get to hear it from the patient what it is like having vasculitis.

                                                  http://www.vasculitisfoundation.org/

Sjogren's Syndrome

Here is a video that explains a bit about Sjogren's Syndrome!!!!

                                                           http://www.sjogrens.org/