Tuesday, January 21, 2014

I Won't Give Up

January 4, 2014

Everyone has their battle scars whether it shows on the outside or hidden deep within. On this journey I've learned for me, each day is a battle to try and conquer both.

I've learned mind and body are connected in ways that are beyond hard for us to fully comprehend. I know how we choose to think, affects every aspect of our lives. It even affects those around us. I have often wondered and now learned that it's a matter of how we choose to respond to these feelings and battles within, that helps us overcome it. I decided to share my battle scars as a part of my update. The fundraisers forced me to open the door that I didn't exactly want to share but I knew I had to. LOL. I was very grateful for those fundraisers. I was touched and surprised by the support we received. We were truly blessed to pay down some medical bills.  I know people are curious as to how I am doing and I owe it to everyone to open up. Most of the scars I have been dealt from time to time are the constant pain, extreme exhaustion that is my constant companion, losing part of my eyesight, the loss of being active, loss of missing out, fear, anger, loneliness, isolation (feeling like my life is a prison). Those are my battle scars within. It's the destruction of the inflammation plaguing my body. It's there, hidden, destroying everything in its path.

The outside battle scars are; Every joint is affected in my movement in one way or another affecting daily simple functions array of life, like picking stuff up, not being able to use my fingers etc. I walk with a limp because my ankles have degenerated. I can't go up or down steps without help. It depends how much strength I have that day too. My eyes have battle wounds of themselves. The whites of my eyes have a blue hue and are scarred permanently.

These are my battle scars. I may not feel comfortable with it all or like it. The disease changed me, even my face a bit. I have to have hope that it's not always going to be like this. It has taken me a lot of time to learn how to turn that panicking fear into comfort. I began to turn those thoughts into, I'm going to live, I'm going get through this. I'm going to be a wife and mother fully again. I soon realized if I thought negative thoughts about life, it made it worse and made it so I wasn't able to move past those thoughts and my life started losing that important constant, HOPE. I had feelings of anger about the cards I've been dealt/given in life, I've tried to learn to remind myself to smile. I made a goal to move each day even if my body hurts like crazy along with the constant fatigue. If I don't feel like moving, I would do it anyways. My stubbornness has helped because it was and is a constant fight to stay out of that wheel chair/bed. I am still working on it. I've got a long way to go, but it's coming. I learned to try to laugh again, I started downloading bright happy pictures and quotes that I want to paint someday. I started to meditate which I thought was a crazy, sounds weird, but has helped a ton. Those are some of the things that have helped me cope with being bedridden.

My journey at this time has taught me I just need to get through these daily battles and TRY, TRY again. Life can be a difficult journey, it's up to us to decide for ourselves how to respond to our daily battles within.

Update: I'm improving very slowly. It's a night and day difference from last winter in 2012/13 when we thought I wasn't going to make it. The doctors are turning parts of my immune system off. I realize this is not the solution I had hoped for. We did everything we could and tried many things to fix it, but for now this is what's keeping me alive. It's been a year since being on these immune suppressants and I'm still mostly bedridden, but I'm getting up a bit more. We are hoping my heart, lungs, joints are healing. As for my eyes I have necrotizing nodular scleritis that is result of the disease. I'm half blind in the way of being really farsighted. I can't see facial expressions from very far. Thankfully, so far I can read up close, so that is a huge blessing.

Beware: I'm about to show my eyes a few months after the necrotizing nodular scleritis began. We have tried to get my pics from the doctor. It's been about a month and a half since trying to get them. The clinic just sent us paper pics instead of digital pics of my eyes. Maybe these one's Kent took is better anyways, because they were really gruesome at the beginning and these are pretty bad. I'll keep trying to get them. Crazy looking back at them huh!



I actually was able to get ready a couple times this month. Yay! That is WAY.....huge for me. It's hard to use my hands (they can't curl into fists and they are a bit crooked to look at). My right wrist won't move up and down. It's painful to put curlers in, but I did it. Hopefully, getting ready will go from a couple times a month to once a week, to twice a week, to everyday. Those are my goals anyways. At least I am starting to have a couple days when I feel like I can function a bit. I tried to cook with my oldest one day and I couldn't open anything or cut anything, but I have to believe that it will come. Most days feel like a really bad cold or flu. You know that extreme exhaustion that comes along with those colds/flu that's how my everyday feels. It's very, very frustrating and hard to function and talk to people feeling like that. Some days vary from really really bad, to bad, to okay. Friends and family please be patient with me. I miss my life with you all. I'm really trying to come up from this, I've realized it's going to take time. Also, know I can't be around winter colds/sickness. It puts me down again on my death bed and takes me a month to get over where as a normal immune system takes a few days. I'm coming up though. Sorry to people who showed up at my door in the past and wanted to see me. If I didn't come, I couldn't function that day at all. I'm sorry if I offended anyone. Why each day is different from the next, I don't know. I've asked many doctors that question and they can't give me a sufficient answer. Please forgive me. Sometimes I am sooo out of it I sleep a ton and have no idea people came.

This pic is one of the days I was able to get ready for my doctor appointment. I wanted to prove to him I was improving. You can't tell in this pic, but I've lost some of the steroid cheeks. Thank goodness. You also can't tell when I close my mouth my jaw is jacked up. I'm hoping I don't have to have surgery or tons of dental work and I hope the jaw joints go naturally back to normal.

I do know that there has to be something else out there to help me. I feel it. There's always promising things to try and we hear about them all the time. Each route we've tried has helped for a time, but each one wasn't enough to sustain me fully, even now. For some reason I have such a desire to not give up that HOPE that something will help fully. We're trying alternative therapies too and that looks promising. I am hoping for inspiration on the the next step. And of course that we can afford the treatment. We are currently looking into the article below in the next post with the research being done at the U of U.

I chose this song on my blog for the words: 

I won't give up on us even if the skies get rough. I'm giving you all my love, I'm still looking up.

If the song does not play for you, here it is on youtube:


I've been sick for 9 years, bedridden for 4 years of that time. 1 1/2 years at the beginning and 3 years are currently right now. The other years were shutting off my immune system, providing temporary relief, but not fixing it. My body began to reject meds and I started having all sorts of side effect problems. But during it all I have told myself I won't give up. I'm also thankful Kent hasn't given up on me during this time. Taking care of someone is very hard and not fun at all. Our lives changed dramatically. He always gave me encouragement when times were bleak. He was and is my rock. 

I won't give up on us even if the skies get rough. I'm giving you all my love, I'm still looking up. What better way to help me keep going.


Cure For RA & Lyme's???

January 3, 2014

U Of U Researchers May Have Discovered A Breakthrough For Treating Lyme Disease

(KUTV) A scientific breakthrough that could change the lives of those suffering from Lyme disease and rheumatoid arthritis as researchers at the University of Utah's Department of Pathology identifies a gene deficiency that makes individuals susceptible to developing severe inflammatory arthritis. 

Their findings were published Thursday in the Journal of Clinical Investigation. Their work - 20 years in the making - gives new insight into how the condition develops and into possible treats or even find a cure. 

Dr. Janis Weis, Professor of Pathology at the U, started the study with former BYU professor Corey Tuscher, now with the University of Vermont, the goal is to identify the cellular processes that influence the severity of Lyme arthritis, "Why do some people get sick and other people do not." 

Their findings became so much more than that, possibly improving the lives of those who suffer from Lyme disease but also rheumatoid arthritis, where symptoms can be similar.

Four years ago, Dr. Kenneth KC Bramwell came on board. "When I started, they had essentially a big haystack and I needed to find the needle in that haystack," Dr. Bramwell told 2News. He said through a process of refinement, they found it, "We've identified a gene, a pathway, and potentially a therapeutic strategy." 

The lead author of the study, Dr. Bramwell explains they were able to correct that partial deficiency in test animals, and feel the results will be similar in patients. "We think that if we can achieve that, potentially through a drug target, we could essentially reduce the severity of disease in the human population." 

They say the findings are exciting and they can't wait to take the next step working with the Centers for Disease Control and hospitals. A grant is currently under consideration to fund their work moving forward. Thus far, funding is thanks to the National Institutes of Health and The Arthritis Foundation.

By Amy Nay

(Copyright 2014 Sinclair Broadcasting Group)Lorem ipsum dolor sit amet, ligula suspendisse nulla pretium, rhoncus tempor fermentum, enim integer ad vestibulum volutpat. Nisl rhoncus turpis est, vel elit, congue wisi enim nunc ultricies sit, magna tincidunt. Maecenas aliquam maecenas ligula nostra, accumsan taciti. Sociis mauris in integer, a dolor netus non dui. 

Gene Variant Exacerbates Inflammatory Arthritis in Mice

Researchers discovered a gene variant that predisposes carriers to severe, inflammatory arthritis, implicating a new class of genes in arthritis progression.

Media Contacts

Severe Arthritis in Mouse Joint

Dec 16, 2013 11:21 AM

(SALT LAKE CITY)—University of Utah researchers have discovered a naturally occurring genetic variation in mice that predisposes carriers toward developing severe, inflammatory arthritis. The finding implicates a new class of genes in arthritis progression, potentially opening doors to new treatment options. The study will be published ahead of print on Dec. 16 in the online issue of The Journal of Clinical Investigation.

Among individuals with inflammatory arthritis, the severity of symptoms, which include joint swelling, pain, and stiffness, varies greatly. The phenomenon is readily apparent among patients of Lyme disease, caused by a bacterial infection that is transmitted by ticks. Despite antibiotic treatment, up to 10 percent of patients will develop chronic Lyme arthritis.

 “We were hoping to identify genes and physiological pathways responsible for the differences in arthritis severity, with an eventual goal of identifying potential therapeutic interventions,” says Janis Weis, Ph.D., U of U professor of pathology and senior author on the study.

Weis’ investigation began after learning that, similar to what is observed in people, a strain of mice called C3H develops severe arthritis with Lyme disease, while a different strain, B6, develops mild symptoms. Because the mice are highly inbred, mice in each strain are near genetic carbon copies of one another. This feature has allowed her group to cross the two strains, progressively narrowing down regions of C3H DNA that confer arthritis susceptibility in offspring.

A result 20 years in the making, her group, in collaboration with Dr. Cory Teuscher at the University of Vermont, arrived at a single base pair change, or polymorphism, in the gene ß- glucuronidase (Gusb) that they call Gusbh. Gusbh mice not only develop severe arthritis symptoms in response to Lyme disease, but also to a rheumatoid arthritis-like condition. This finding implicates that the protein encoded by Gusb is a contributor to two types of inflammatory arthritis, expanding the potential impact to a larger group of arthritis patients.

The GUSB protein is an enzyme that resides in the lysosome, often considered the “stomach” of the cell. There, the enzyme breaks down complex carbohydrates called glycosaminoglycans (GAGs).

Until now, there were no clues as to how this type of protein might regulate arthritis progression. “All we knew is that Gusb is a housekeeping gene that carries out the nuts and bolts activities in the cell,” says Kenneth Bramwell, Ph.D., a postdoctoral fellow in Weis’ lab and lead author on the study. “We had our work cut out for us.”

The study shows that Gusbh causes an amino acid change that lowers the enzymatic activity of the protein by up to 90 percent. Consistent with the observation, GAGs fail to be broken down in Gusbh mice with inflammatory arthritis, and accumulate at sites of inflammation. These findings suggest that the build-up of GAGs is a contributing factor to the development of severe arthritis.

“These [GAGs] may be activating the innate immune response. That’s one possibility. It could be that GAGs are deposited in response to this infection and that that contributes to a more severe disease trajectory,” says Bramwell. Future studies will focus on understanding the mechanism, with the intention of identifying new ways to halt disease progression.

This is the first time that a lysosomal storage enzyme has been implicated in the development of arthritis. The discovery reveals the possibility that GUSB or the 40 other members of this class of proteins may also be involved in the progression of arthritis in people.

“The doctors that we’ve spoken to who have familiarity with rheumatoid arthritis are quite excited by these findings,” says Bramwell.

Listen to Weis and Bramwell discuss their discovery on The Scope Radio.

This work was funded by National Institutes of Health grants R01AR43521, R01AI32223, T32AI055434, R01NS061014, R01AI042747, R01NS060901, R01NS036526, and the Arthritis Foundation.

Research reported in this [publication/press release] was supported by the National Institute of Allergy and Infectious Diseases (NIAID) R01AI32223, T32AI055434, R01AI042747, National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) R01AR43521, National Institute of Neurological Disorders and Stroke (NINDS) R01NS061014, R01NS060901, R01NS036526, and the Arthritis Foundation.

Thanks & Thoughts

May 13, 2013

I just received the best surprise ever! I came home from a Dr. appointment with my whole yard weeded and flowers planted everywhere. Oh it is sooo beautiful!


Before I got so sick I would spend hours outside gardening and planting flowers. I have  realized being outside is truly my place of serenity. For me, I know without a shadow of doubt  there is truly some sort of healing there. I’m an outdoors girl all around! I may not have known what I was doing in the past when I was gardening, but I loved it. A flower just makes dark moments a little brighter. It helps me forget all my current woes. The generosity and love given by others helps remind me to keep fighting when I have felt defeated over……..and……..over.

Thank you, thank you to the wonderful people who were involved. I know that was expensive. Please know it has meant the world to me.

I’ve been debating of giving a little glimpse of what my life has transpired recently. I have had nothing, but bad news. Especially lately. I would rather you all hear it from me than from other sources or my kids not understanding it all and trying to explain it.

To be honest, recently has been some of the darkest moments of my life. Going blind for a time in February when the inflammation was at its worst and not being able to see or move was the most torturous time I have ever endured. It felt like the worst kind of prison mentally, physically I have ever been through. A prison of all I could do was just lay there and be stuck in one spot. I couldn’t watch TV. I couldn’t read. I just had to sit there in this pain and anguish for days. I was very, very angry. Angry at God for taking everything from me. I felt abandoned by God that my prayers and efforts were in vain. I felt, haven’t I truly endured enough already. Hasn’t my family been through enough without a mother and wife for two whole years? Why did things go downhill so fast when I was seeing improvement?

During that time I couldn’t let anyone in my home for I did not want anyone to see my anger, to see how bad things truly were and see my pain. I knew I needed to get through these emotions in my own due time. I didn’t want anyone to see how deep into that hole I had truly fallen. I knew if I talked about everything my anger would come about in my words. Over the last few months time I have realized my anger and bitterness will get me no where in life.

No matter what religion you believe in……I believe there is a God at my side. Helping me carry all these burdens. I may not understand why I’m going through all this, but I do know to keep on renewing that hope, faith, to treasure every moment with my family and to get the most out of life. I can try to be a good mom from bed being crippled with limited movement. I may not be able to go to my kids concerts or sports activities (that they want to do, but haven’t started back up again), but I figure if I try to be the best mom I know how that’s what matters.  I can only do what I can at my own pace and I have learned to just be grateful for what I do have in life.

Every specialist I’ve seen, even the best in the country don’t even know what to do with me. As I have mentioned before, whether its alternative medicine or Western medicine it has all been the same.  I like being a little unique, but this complicated, rare and uniqueness medically that I hear from every doctor I see I didn’t have in mind. LOL I worry about being the label of a hypochondriac or being a “sicky” my whole life. I am trying my hardest to get rid of those labels if said by anyone or put upon myself by my own thoughts in my head. LOL It is kicking me in the arse, that’s for sure. Ha,ha

The good news is right now, my joints have improved a bit. I’m trying to move and get out more. It amazes me how much energy it takes just to sit up, talk and move. It’s improving though. The bad news is the disease is also in all in my organs. From what I was told I just saw the best eye specialist in the country. My vision is changing constantly that usually happens over years time is happening fast within the last weeks, and few months. They said, “I’ve never seen this before”. I don’t know what the official outcome of the permanent damage will be to my eyes. Once the disease stops attacking them we will know what were faced with. My eyes might be freakish to look at when all said and done.  The inflammation ate through the whites of my eyes and shows parts of the blue layer underneath. Especially, in my left eye. I’m just sooo thankful my up close vision is still working, so I can read. The pneumonia is still there at the base of my lungs. That’s probably why I’m so extremely tired all the time. They told me to go to a different pulmonologist and to see a cardiologist. They want me to go on more drugs and steroids. I absolutely hate steroids knowing what they do to me. Sigh…… And last week tests came back positive for skin cancer on top of my head. Sigh……..I go in for a small surgery on Wednesday.

I’m sorry I don’t know who was all involved with my flower beds, but please send my thank you a long to them. Thanks again! 


Searching & Praying

March 7, 2013

Beware, my update is not so pretty, but I’ve had a lot of people ask. First I want to say how appreciative we are for all the love and support from so many people, even people we didn’t even know have helped out. We were sooo very blessed to be able to pay down such a huge, huge bill. Thank you sooo much!

Because of medical reasons we are not going to the naturopathic clinic right now. The clinic got me somewhat walking and driving again, which was awesome, but since November I have plummeted and have taken a turn for the worse. We are actively trying to figure out what to do and what treatments are the best way possible. Going either the western or the alternative medicine routes have both seemed to backfire on us. We have tried soooo many things. To summarize a lot of what has taken place; I am crippled again. All the improvement that I made is lost. In November it started out as a pulmonary embolism/ongoing pneumonia, that just didn’t want to go away. At the same time we found a blood clot that has prevented me from getting some of the IV treatment that helped me before. And now, this one is really hard for me to say. I guess because its so current. The inflammation is spreading so fast its in my head and eyes. I have scleritis. I have learned I am on my way to going blind. If I don’t do something fast I will go blind permanently. I started steroid drops in January that have helped, but I was told I can’t be on that for too long or I can go blind from those as well. So as of right now I am going into the hospital to get a RA infusion tomorrow. It is a quick fix drug that turns off some of my immune system. Unfortunately,  I can get serious side effects from it like I did with my last RA drugs. But the quick fix is what I need right now to hopefully prevent me from going blind or having permanent damage. I pray I don’t get serious side effects from it. Right now my eyes are just blurry, extremely painful and lots of pressure in my head. You know the first thing I thought of when I thought I would go blind? Is my family of course. Then I thought; Oh no, what if I can’t see to do my hair and make up. Silly me I know, but I miss doing those things. LOL

I know how serious everything is. Realizing it, has made me real, real sad. The problems with my eyes have forced me to do a lot of soul searching, breaking down of why I have to endure one more thing. It also makes me wonder what my purpose is here, how can I overcome this new challenge. How do I not let anger get the best of me. I am still trying to figure it all out. . I think it will be okay. On a positive note the RA drug could also get me moving again to where I can try to combat it with other therapies. We haven’t told our children that part yet about my eyes. We don’t plan to unless it doesn’t go away. There have been many times I have felt like, oh my gosh I could have died, but I think I am here for a reason. A reason I don’t know. But I do know I won’t stop fighting to prolong my life. I want to be here.

On a happy note, we decided we are not moving or going somewhere warm for awhile. It just didn’t work out with so many variables. Right now we’re trying to think of ways of how I can survive next winter. We love it here and we don’t want to leave our family and friends. With our tax refund money and refinancing our house we have thought of building a sun room. I know the sun is vital and helps my disease a lot. It is the one thing that I know that truly has helped. We are hoping it will help me get through next winter. I have read many comments that people chronically sick and building a sunroom is the best thing they ever did. We know money is precious right now and its hard to know what’s best. I also realize what I do for treatment this next year might be way expensive. It always is, no matter what route I take, but I think this our next step. If it doesn’t work out for next winter then I guess we move.

If anyone has thoughts or ideas about a sunroom or has done one let us know. Please be positive, I know most of you would, its just I can’t handle negative things right now. LOL If you want to tell me, “That is a way dumb idea”, please message Kent instead. LOL



Emily's Story Featured On KSL

November 12, 2012

Woman walks again after missed Lyme disease diagnosis

FARMINGTON — The low point came for Emily Koster when the mom of three woke up one morning with her limbs locked, unable to move.

It had been seven years since she had first started having problems. It started with her hands and feet, as her joints started to lock up every night. Eventually, Koster was diagnosed with rheumatoid arthritis — by which time she was "pretty much crippled" — and prescribed steroids, which were effective enough that after three years, she was able to take up running and began training for the Wasatch Back.

At the start of every winter, though, she found herself bedridden, and it got worse every year, starting earlier, ending later and causing even more pain.

In spring of 2011, Koster went to a doctor with extreme back pain. She said doctors seemed to roll their eyes at her, even telling her it was a psychological problem, although more and more, signs were pointing to Lyme disease. She and her husband, Kent Koster, visited doctor after doctor over the following months, trying to find someone who would stop prescribing steroids and just listen.

"It's very aggravating to have doctors tell you it's all in your head," she said. "But at this time, antibodies finally started showing up, eight years later. That's a long time."

By February 2012, Koster had worsened to the point that she was unable to do anything by herself and relied on her husband for every movement.

"I couldn't feed myself; my arms were locked straight," she said. "My ankles couldn't flex. I couldn't walk."

Koster said she struggled with knowing that her children were missing out on things because medical bills prevented them from participating in extracurricular activities. And on top of that, they had to step up and help her when she could not help herself, bringing her extra blankets or even just a glass of water. It's hard seeing that because of me, everything changed for them," she said. "No child should have to take care of their mom."

The Kosters had continued to hop from doctor to doctor, trying to find someone who would be willing to treat the Lyme disease that even tests showed Koster had. Kent Koster said he believes it took so long to find a doctor willing to treat his wife because Lyme disease is so controversial. 

Definitions of Lyme disease vary, and according to the official definition put together by the Infectious Disease Society of America, chronic Lyme disease does not exist, meaning insurance companies don't want to hear from doctors who insist a patient has chronic Lyme disease.

It was with that in mind that the Kosters continued their search for a doctor, and In February, they finally found someone willing to do more than just prescribe steroids. Koster began daily intravenous treatments and was taken off all other medication.

After two weeks, she was able to stand on her feet. During the third week, she could take baby steps. A few weeks later, she could walk from her treatment room to the front desk. Now, on a good day, she can walk to the park down the street from where the Koster family lives.

She may not be able to go long distances — yet — but they are steps in the right direction for someone who for years had doctors telling her "it's all in your head."

"I can't walk long distances, but I can walk somewhat. It's definitely better," she said. "I'm getting more and more to where I can function again and be a mom. I'm not back to normal, but I can see the light at the end of the tunnel. It's coming."

Full story link:


Auction Was A Huge Success

November 1, 2012

Thank you to everyone that donated and also to those that were so generous in their bids. Emily is fighting each day to get better and the proceeds from the auction not only have helped extend the length of her treatment but have lifted her spirits.

Incredible Experience!

October 21, 2012

Just had an incredible experience and had to share. In preparation for the auction this weekend I was going door to door visiting businesses on Main St. in Bountiful asking for donations. I wasn’t having much success. 

That is until I stopped by;


As soon as I started my plea multiple people opened their hearts and made donations for Emily. All Tucked In generously donated a gift card as well as offered to put a donation container by their register for Emily. Another person in particular was Jane Hancock from;


Not only did she donate money but she also donated a very beautiful girl’s apron and matching purse as well as an exquisite woman’s purse. Each of her designs are beautifully made and one of a kind. When I got home, Emily was in tears listening to me recount the story. Please show support to these generous people by visiting the page and store.

Yard Sale

This is a panoramic of the Farmington Yard Sale.

Both yard sales were a huge success! Thank you for your generosity, love and support. A special THANKS to the Miller’s and Barrett’s for taking on this HUGE undertaking. I never would have thought that it would require so much time and effort. Also, thank you to all the many people who helped make it possible. I want you all to know how much this means to me. Thank you!

Snow Cone  Fundraiser Was A Huge Success!

September 18, 2012

WOW!!! What a day. What a perfect day. I am having a hard time putting into words how I feel. There are not words sufficient to describe it. The “Kones for Kosters” was a wonderful success. There are so many amazing people. Thank you to everyone who helped spread the word. Thank you to all those came and shared their love and kindness. We were especially blessed that Emily was able to come out and see the outpouring of love for her. A truly heart felt thank you to Rani Hiller for making this day possible. She generously provided the Hawaiian Ice trailer and materials. Thank you to the outstanding young women in the ward that worked all day making the snow cones. They were delicious!

Thank you for sharing my story on Facebook.

 Kent Went To Harmon’s Tonight And Found A Fundraiser Poster Of Our Family.

 He came home to show me a pic on his cell phone and my response, I choked on my water and said; “Oh wow that’s cool” and tears came to my eyes. I am seriously touched by the response. If you’re wondering what I am talking about go to; 

http://raceforemily.com/ or the FB page, “Race for Emily” and like it. 

We need every bit of help even if it’s just to bring awareness. =) A sincere thank you to all.