Good News

Wow! I feel so touched! My friends brought this shirt by for me and said they wanted me to know they were thinking of me while they ran a relay race. How cool is that! They are, The Chasing Chocolates. I hope it was okay I posted a picture of you ladies. They are running in a huge relay race that is 200 miles, The Ragnar Wasatch Back. Two years ago I ran this race and was runner 9. One of my running legs was 9.5 miles. It is weird to think I could run that back then. Unfortunately, my health declined shortly after that and the medicine I was on was not keeping the disease at bay. Lately, life feels extremely difficult; Kent working so many extra jobs to pay for my treatment, not seeing him much, the worry of how I am going to survive while Kent travels for work. I have never relied on him so much. Going through the many ups and downs of recovery, antsy of wanting to be more normal and just being really stressed with how to pay for my treatment.  I feel so blessed that people would care enough to do something like that for me. It truly keeps me going. I don’t think they realize how much that means to me. It really uplifted me at a time where I have felt so worried, down and discouraged. Thank you!

To do a Fundraiser or not to????

There has been talk of friends doing a fund raiser for me. My treatments are a few thousand a week and unfortunately insurance does not cover it. I am seeing huge results so I know this is the route I need to take.  I have to admit all my insecurities about a fund raiser come out in me thinking about how to do it. (LOL) Like, how can I ask more of people when they have done so much for me?, what if we plan this big fund raiser and no one shows up? Or how do I even begin a fund raiser? And I have had thoughts of, I have a serious disease and it was almost fatal, but it’s not cancer like most fund raisers I see out there. Will people support Lymes and Rheumatoid Arthritis if I explain my story?  And the one thing that is the hardest for me is, I don’t like this kind of attention on myself. I am more of a background girl and shy. So as you can see, I have many insecurities about it. (LOL) Maybe this is something I need to just bite the bullet and overcome.  I am still stewing it over. It would help us tremendously and the only reason I even consider a fund raiser is to ease the stress on Kent and my family. For I feel a heavy burden of causing so much for our family.


Good Day

It is weird how one day from the next my disease can come on so strong and debilitating to where I can’t move at all and the next I have a really good day. I really don’t understand it. I am not sure what triggers these flare ups, or why my days or so dramatic from one day to the next. I am just grateful I am having some good days.

 I am excited to share a really good day I had last Monday. It was so good I decided to drive myself to the clinic. I know your probably saying, “Holy crap.... she drove”?!!! My mom and some friends freaked out, but I promise on the really good days I can move my hands and legs and feel strong enough to drive. While driving I teared up and thought, “Wow I am driving”. It was so exhilarating. Well after I was done at the clinic I decided to go to Target with my girls. I rode one of those wheel chair motor things while shopping and we laughed and laughed when it made huge loud beeping noises every time I had to back up. Its soooo loud its embarressing to where people turn around. (LOL) My kids always want to get on it with me. When we finished shopping I said to Karlie, "If I take this out to the car will you ride it back into the store to return it"? She said with excitement,” Sure mom that will be fun”! So out to the car we went. I think she was thinking it would be like the four-wheeler we used to have. (LOL) Well, once I got in the car she got on the scooter thing drove around the car and came back around to me  again. She  said mom, “I don’t know......, I think I change my mind”. I said, “well its too late now and asked her what she wanted to do”.  She decided to take it back and begged Emma to go with her for support on her lap to return it. Before she left, “I said make sure you let the cars go by because it’s really, really slow”. She said, “Okay mom”. I watched from the car as she waited for cars to go by. She had a huge opening with no cars and started to cross the street. The wheel chair motor thing is so stinkin slow cars started to line up waiting for her to cross and she even tried to make it go faster by pushing with her legs. Watching from the car I was thinking, oh no, and chuckling. They finally made it in and returned it. When they came back Karlie said, “I am NEVER doing that again mom”! We were all laughing so hard. She said, "Mom so many people stared at me. It was so embarressing".  I said, "I know exactly how you feel Karlie". It was fun just laughing so hard. I don’t think I have laughed so hard in a long, long time.  

Other big news as many of you already know, we traded in our truck for a new (used) car. Kent would have to carry me up in the truck every time we drove somewhere. We thought about this decision for a very long time. At first we wanted to trade in Kent’s small car because the transmission is out on it and he has just jimmy rigged it to get us by. But we decided against that since it is paid for and we didn’t want another payment for all our extra money goes toward my treatment.   So we traded the truck straight across. Anyone who knows me knows I love trucks, SUVS, camping and four-wheeling.  It was seriously one of the hardest things to give up. The truck was a symbol of those fun family memories for Kent and I. I know in the years to come when I get my health back I will be able to do those things again. Trading the truck in is definitely, worth the freedom and independence I will gain from this new car. It is perfect to where I can get in on my own. A SUV was too high and a small car was too low to where I would have to fall in. It is a crossover and it is at perfect waist level for me to get in. We even got a very good deal on it. Kent is such the smooth talker. Or I should say he plays hardball when it comes to buying a car. LOL

Roller Coaster

It’s been about a little over 5 weeks since I wrote my last post. Wow! What a roller coaster of a ride it has been!

When I have a really good day my improvement is awesome. I am able to stand and sit longer. I have even attempted stairs. J I still need a lot of help, but I will get there.

 I’m sorry that this blog post is somewhat depressing; I just wanted to put it all down for a record. As I finished writing this blog entry I kept feeling inadaquate and discouraged.  Over a couple weeks I realized the reason for that, is I am addmitting to myself and those that read that I am struggling. I have felt lost. I have gone back several times to this blog post wondering how I can change it. Anyone who knows me, I tend to keep a lot to myself.  Kent convinced me to post it. I hope that in some way through this expeirence I will see what I need to learn or know how to overcome these daily battles.

On the very bad days I got to admit, at times I have felt really discouraged. The bad days happen frequently and weekly lasting several days at a time. The weird thing is I will be fine one morning and throughout the day the disease will flare up strong and by that afternoon I won’t be able to move again. It is not very predictable. It comes fast and debilitating. What I consider a bad day, is when the pain is so excruciating that to put my weight on my feet to stand it is unbearable and I scream out a cry of pure agony. Every movement of my joints is sheer torture. I also consider a bad day when I have a temp of 103 or higher accompanied by a migraine. On these days, Kent somehow has to talk some sense into me and get me into the clinic. Once I am at the clinic I soon get that relief again.  I can handle the okay days with aches and minor pains, but these excruciating days I never imagined it would be so hard physically and mentally. When I was bed ridden I knew how to tell my mind to survive and keep going, but being beat down over and over again with this roller coaster of good days and bad days mentally I have struggled. I thought my road to getting better was just gaining my muscle back and relearning to move again, which it is to some degree, but boy was I wrong!  I have pondered and thought a lot about how to find that fight in me again and determination to overcome this. I have the will to live; I know that from my experience of almost dying 3 months ago, but that drive to fight through this pain I have to search for. I never imagined a roller coaster of ups and downs for that is the only way I know how to describe it.

As I search for the fight and determination again. I think I am finding it. Heavenly Father has given us reminders that he is there for us. Not only once, but a second time has my bishop received a large amount of money from someone who generously paid for a week of my medical treatment. I have no idea who gave us this money, but it has come at a time when we really didn’t know how we were going to come up with it. It also has come when I have felt so down and discouraged. My weekly treatments are a huge (to me anyways) sum of money and to know that people would do that for us is just so amazing. We just feel so blessed and overwhelmed with gratitude.

 With the outpouring of love in the form of people bringing us meals, cleaning and other service we have received over the months times, I have realized…….because of you, each and every one of you I am getting better. And because of you I am able to fight this daily battle. All I have to do is remember how blessed we are.

Thank you for giving me this 2^nd chance at life!

Beginning of Recovery

I will try and explain where I was almost 5 weeks ago to where I am now and where I hope to be in the weeks to come. I am not sure how much detail to go into. I want to document it, but it’s hard for me to tell and see for myself too. I just don’t want to come across as depressing, but feel the need to tell it like it is. I have gone from literally from dying to seeing miraculous improvement in these last few weeks of getting these medical treatments.

5 weeks ago at the diseases worst, I was not able to move, literally, at all to the point where Kent had to move me for every little thing. When he did move me and help me stand up I would scream in pain, I have never been in so much excruciating pain in my entire life. The pain was 10 times worse at nights. I would happily go through natural child birth again than endure this. (I went natural with Ethan).  Kent and I have never heard such tortured cries come out of me when I was moved or carried. The pain killer did not cut the pain at all. I couldn’t open my mouth to eat, I couldn’t close my hands they were stuck out straight and each finger was crooked and swollen, I couldn’t  touch my face or itch it. Once I was planted in bed I was stuck. It’s like being tied down to a bed and being held down with ropes. And there is nothing you can do about it. It is sort of a claustrophobic feeling. I panicked at times when I got that claustrophobic feeling. I would have to calm myself down and tell myself I was okay.  I was told I was gaunt and pale. My mom said I looked like a holocaust person. My parents began to visit often and were scared. For two months straight at its worst I was so dependent on Kent he slept up in the bonus room with me in a recliner each night so he could be by my side in the hospital bed. When I had fevers and night sweats he was there to help me take the blankets off, because I could not lift a thin blanket or move my hands to do anything to help myself. When I got cold he was there to put the blankets on. When I lay there in pain he was there and gave me ibuprofen.  The poor guy! I am so blessed to have him. He never once complained and he always heard my cries of pain each night. It was probably agony for him listening to me.  I am glad he was the one to hear me and experience my pain and not others. I just couldn’t bear it or want anyone else to see it or hear it. At times in the day it was hard to hide if from people that came to visit.

Week 1 and 2 of IV treatments: When the treatment started I felt like my legs had restless leg syndrome all the time. It made it so I could not sleep at all. I remember lying awake each night just thinking. It was almost like the feeling of waking my system up from the dead. I had insomnia. I think that restless leg feeling was the beginning of all of the medicine working throughout my body to get my limbs moving.  I think it was about after a week and a half of treatment that I took my first steps. I am kicking myself for not documenting that. Kent and I were just too excited and amazed. I was hunched over holding onto my wheel chair. They had me use it as a walker. I could barely walk or move. It was inch by inch, but at least it was something. I had to relearn to move and lift my feet. To relearn to move your muscles you have to think through every little movement. I would try without success and think, oh yeah what muscle was that, how do I tell that part of my brain to tell that muscle to move. It was hard. Each night I would wake up drenched in sweat. I think that was my body’s way of getting rid of toxins. I remember for a full night straight and into the morning I peed about every 2 hours. (Poor Kent had to get up every two hours and had to stay constantly with me.) I lost about 15 pounds in the first week from my body clearing the inflammation.

Week 3 and 4 the improvement is still awesome and considering the broad spectrum of things I am truly happy to be alive.  I still have very bad days sometimes, but the clinic has managed my pain to where the improvement is beginning to out-way the bad days. On the really bad days I have to remind myself it is temporary and to keep going and not get discouraged. They told me it is my body’s way of working through all the toxins and build up and to expect those bad days to come sometimes. They also told me I get sick very easy. And I keep getting sick frequently. Last week I had a temperature of 104.5, so that was a few hard days with pain, but I got through it. I think I got a virus from Kent or from the kids or something.  I just get sick to the extreme; I think because I am still so weak. Fortunately I can touch my face now. It is so exciting on those semi good days when I can put my make-up on. My body may definitely not yet be working quite right, but to actually be able to put some make-up on for me was huge. Just a little normalcy of my old self was wonderful and has meant a ton to me. I can walk straighter, still not normal and perfect, but it is getting better. I can bring my legs up in bed and turn in bed now, which is heaven. I am beginning to actually lift my cup to take a drink, my small motor abilities are still limited, like getting the toothpaste open, opening a door, turning on the sink, washing my hands, washing my hair, getting dressed. I still can’t do all these things without help, but it’s slowly coming back.  The main goal right now is to build all my muscles back. Every muscle has atrophied to where it is disheartening, but I will get there. Once I can accomplish the small motor skills, getting out of a chair, withstand sitting in one position for a long time or standing for a long time, the next step is going to be a HUGE challenge. THE STAIRS.  Going up and down steps is daunting to me like going up a huge mountain. I will work at it and accomplish it though.

I am not sure how much time getting these motor abilities back will be or when I can do steps……. I know I might have a long road ahead of me, but I have hopes with the improvement I have already shown that it might be sooner like a month or two. Who knows.  J

I feel like I owe so many people for helping us. Thank you for the meals and for helping clean my house and laundry. I can see the relief on Kent’s face when he comes home and isn’t left cleaning all evening and having to cook dinner. I know it has been months and I feel horrible about that.  I am hoping to be more functional soon. Please know I appreciate it so much! Love ya guys!

Angels Watching Over Me

The doctor said, Emily you are in trouble, but the good news is we have a lot to work with. There are 25 levels on your blood work that are not normal.  It’s going to be a long road with extensive treatment. There are 3 levels that are extremely out of control and in her words and are very unacceptable. She is a German doctor and her accent is fun to listen too. I can imagine her accent in my mind as I am writing this. She said my Rheumatoid Factor level reached 600 or could be even higher than that with that being the highest number it ranges up to (Normal is 14 or less). With that being high and an infection being the highest she has ever seen 1280 (normal is less than 10). And my Eosinophil’s being high which measures my allergic response being 1725 (normal is 0 to 500). She said with these 3 being so high, those alone can be very deadly. She said that I have critical numbers and that life is fragile. She said that even though I still have life force, with so much inflammation and infection it’s not reliable knowing what will happen next. There is an urgency there to get treatment now.

She said based on findings, the good news is there are angels watching over you. She said it just puzzles her how normal my heart beats are with that high of inflammation. She said by having that kind of inflammation throughout the body, my heart has to work that much harder with my input and output. She said my heart is strong. I kinda wonder if being a runner in the years past kept my heart strong and prepared me for this trial now to keep my heart strong. Who knows. J

I have had several experiences confirming that I am being watched over.  I just feel so blessed that I get a second chance at life. I realize how fragile life is and how close to being gone I really was. It was so scary.  I feel like I am going to be okay now. I think I have finally found the best route for me for treating my disease. It took me 7 years of trial and error with a wide range of medicines and trying different things to find it. Right now the plan is to get extensive IV treatments every day. I think these IV treatments will be for the months to come, so we are debating whether I should get a pic line put in.

This is a record for myself, but every day I get a range from 7 to 11 IV bags a day. Ranging from: Antibiotics, antivirals, DMSO detox, Vitamin bag (B Vit., Minerals), Homeopathic, Anti-inflammatory, Electrolytes, Circulation (to reduce inflammation, liver, blood flow to nerves) Homeopathic liver, Lipid stabilizer, Mineral/copper (control immune system), zinc, niacin, oxidative, Vit. C., Vit. A. I am sure there is more, but it is hard to keep track.

My RBC are low so I have to be put in this Hyperbaric Chamber. I feel like I am in space. I also need O2 tank.

I have seen miraculous improvement jut from a weeks’ worth of IV treatments. I took my first steps a couple days ago. I have to re learn to walk and move each muscle again. Turning and moving is so hard. I know that sounds dumb, but when you haven’t been able to move for so long you have to remind the brain how to work those muscles again. It is going to be a challenge trying to regain everything back, but I will take it. I am just so happy to be alive.

 

This part below I wrote a week before my treatments, so the timeline is a little off to my treatments above, but I thought it should go next.

Lately, I have been contemplating, what my family and I are supposed to learn from this trial. I wondered and have recently heard the metaphor, “The most precious metals have to be worked and refined in the fire to become something marvelous.” I thought well, maybe we’re being refined like a precious metal in a fire to know what’s really important in this life.  To realize that we need to have the up most faith, that things will work out and to trust we are being guided in the course we’re on. I have seen a change in all of us. I think we all realize life is precious. Treasure it to the upmost.

We moved me up into a hospital bed up in the bonus room. The first time I looked out the window of the beautiful mountains I just cried for I haven’t seen or been outside in sooo long. When I walk again I want to kiss (metaphorically) the earth and the surrounding of this beautiful place we live. I have realized I want to see so many things with my family and have fun family experiences. My kids are growing up way too fast. J

I am opening myself up here, so here it goes: A close friend to me who has been through this experience with me from the beginning. She was the one to help me find direction of what doctors to see and what I could do more to help myself. She told me, I know people have told you, you are going to die. She said, DON’T LISTEN TO THEM. YOU decide whether you’re going to live or die. These doctors are there to help you, but it is you who really makes the difference.  She told me to put affirmations all over my room so that I can keep my spirits uplifted. She also told me to watch, “The Secret” movie each day to help uplift me. It is a watch instantly movie on Netflix if you have it. I found it on amazon, but maybe the library has it for free, not sure.

 http://www.amazon.com/dp/B000K8LV1O/?tag=googhydr-20&hvadid=7581749967&ref=pd_sl_1kxjjnv2bg_b

I know affirmations seem dumb, but they have helped remind me of what I need to tell myself. I found these in a Google search of chronic illness affirmations. The hardest one for me to accept was the one that said; I trust Gods will for me. I didn’t like hearing that at first, because I wanted control of what happened to me, but I have realized no, that’s not how it works and I truly believe and trust in gods will for me now. I am going to live.

Spiritual Expierences:

A child’s voice: My sweet neighbor told me of this experience with her daughter. Her daughter is 2 or 3 I can’t remember but she said to her mom, “Emily Koster is very sad today”. Her mom decided to call to check on me and the Stake President was here to give me a blessing. And yes I was very sad that day for how sick I was and not knowing what to do. I was scared for my life. About a week later she told her mom again, mom Emily doesn’t have dinner tonight. We need to bring her dinner. Her mom called me up and said they were bringing me dinner. How that little girl knew I didn’t have dinner and the things she said, how could that not be divine inspiration from above. How a 2 year old could know my name and tell her mom what I needed that in itself is amazing. I just cried knowing the many people who have helped me.

A dove: I have been reading a ton and I read this story about this mother who lost her son Josh in a fatal car crash. It talked about how hard it was to overcome. Well over time her family decided to go fishing as that used to be one of the things they loved to do as a family when he was alive. While fishing the mother noticed when she looked back at her daughter that there was about 30 white butterflies surrounding her and she asked, maybe Josh can communicate with us, so they asked Josh if you’re here will you please send us one yellow butterfly. Then all of the sudden, from out of nowhere a large yellow butterfly flew in front of their faces. And from that point on they talked to Josh as they fished.

As I read that story I saw a picture of a perfect white dove in the beginning of the book and I thought, you know, I think it would be cool to see a pure white dove like that. That night I asked Kent, Do you believe God can send this butterfly as a symbol that their son was with them? And He said, "Yes I believe so". The next morning I woke up to this picture I took with my cell phone on my ceiling with no other light reflecting around the ceiling. I sat and stared thinking, wow that sure looks like a dove with its wings flapping and the story quickly returned to my mind. At this time this happened it seemed like everything in my world was going wrong and I wondered if Heavenly Father was really listening to my prayers. My mom mentioned the picture to my brother and he said you know they teach in the mission field that the white dove is a symbol of the Holy Ghost. I just was in awwww and comforted. I felt like it was a symbol to me knowing he is truly there with me. Watching over me and my family at this time.

Silver Lining

It has been awhile since I have written. For a long time I have known this disease moves around continually in my body over time and in the last few weeks it moved to my dominant right hand. I lost all function to move it; it was very swollen with fluid and was painful to the touch. If anyone would bump it I would scream in pain. It was funny trying to use my left hand eating spaghetti one night. The disease is also in my jaw and has limited my ability to open my mouth. I have lost the ability to yawn and so my yawns are very pitiful (sad, but funny) to watch.  With those two combined, I am glad my mom put a huge paper towel on my chest and let’s just say, it looked like a two year olds bib by the time I was done with my spaghetti. My mom and I just laughed and laughed.  I tease to myself and to Kent, I am a big adult baby. LOL It’s been a few weeks and I can finally move my hand with a little discomfort.  Yay!

Yesterday, I went to see a local doctor (not my current Lyme specialist in Kirkland, Washington). I have gone sooo far downhill that the Washing ton Dr.’s office asked me to find a local doctor to help watch my care since I am not well enough to travel to see him to test me and follow up on me continually. It was just too hard over the phone and going through email. By law in Utah, the Washington doctor cannot prescribe home health care for him being an out of state doctor. He can prescribe medicines and blood work just not home health care for me. That is the other reason I needed a local doctor. It has been a huge a bit depressing realization that I need home health care and hospice. A nurse told me don’t think of hospice as a death sentence think of it as you just need more care and that is what it is there for.

I have been feeling for the last month that I am going to die if I don’t do something now. It’s just a feeling you get when your sooo scared of whether you’re going to make it or not. I didn’t want to believe reality. I was hoping my thoughts were wrong and that we were all worrying too much. Well…….The doctor confirmed my dreaded thoughts with this visit. Confirmation hit me hard and I cried… She said if other people had gone through all that you have gone through they would not be here today. She said I can tell how strong you are and you’re will to live. She said this is so serious Emily. You are on survivor mode which is not going to last long, or at all. I told her, yeah I know.  I feel it and have known for a while. She said you need more serious medical treatment than what you have been given.  

Dr.: She asked, “Who takes care of you during the day”?

Me: “I sleep a lot. My friends help me get my lunch and meds during the day”. My mom helps too.

Dr.: She asked me, “Who takes care of your kids”?

Me: “Themselves. I can’t take care of them or do their hair or anything. They do it all. They are more independent though. (When I said that to her it sounded so lame, because I know that’s not how it should be). I WANT to be their mom and be there for them”.

Dr.: “Who takes care of your husband and he has extra jobs too”?

Me: Yes he does and he takes care of himself”.

 It makes me feel so guilty of our situation and not being able to help my kids, but it was a hard good realization of how bad it is and that I need lots of help.

Kent wrote this about my visit to family and friends: I want to add to the part about the 50 shots at the bottom for it hit me hard realizing another important lesson. Maybe all these lessons are why I am going through all this. I don’t know.

Just wanted to let everyone know how it went today at the Dr.’s office. First we met with Marietta Bergdorf, NMD. This was a couple hours long. We pretty much laid out in detail the last 7 years of Emily’s torture. After that she gave us roughly an idea of what it’s going to take to get Emily better. The Dr. stressed to Emily the seriousness of her condition and that it was only through Emily’s strength and shear will to live that has kept her alive. To sum it up she said we need to do more than just address one part of the disease; we also need to address Emily’s whole system. The major hurdles to overcome are her nervous system which is entirely out of control, the swelling in her joints, the malnutrition from her body’s inability to function and finally correct the damage that has been done from the past year of being bed ridden. To do this we need to know what direction to start so she ordered a whole plethora of labs. After taking blood for the labs they started her on a vitamin IV. Almost immediately she started feeling a little bit better. Then the torture began. Marietta had her lay down on the bed and began poking her body looking for places to inject. I am not sure of the solution she was using but its purpose is to help fix the pain she is experiencing in body. Once she found a nerve pathway she would inject it. So Emily got poked probably 50 times over her legs and back. She was not a happy camper. After that was done, they took her back to a comfy leather Lazy Boy that has a heated massage. Looks like I will soon be going to RC Willey to buy her a new Lazy Boy. She finished up her first IV bag and they brought in a second. This one contained the medicine. At this time Dr. Holland, MD paid Emily a visit and talked to her about pain management as well as home health care. He was very sympathetic and gentle. He also talked with her about physical therapy. By the time Emily was done we spent almost the whole day at the office. The bummer is that now we have to wait for all the labs to come back. We scheduled her next appointment for the 23rd. This is when we’ll hear from them the plan of attack.

Thank you everyone for all your prayers and kindness. The outpouring of love has truly been a blessing on our family. I can’t thank you enough, but at least I can take comfort in knowing that your blessings in heaven will be stacked high.

I want to add what we talked about when I got those 50 or more shots and I am not exaggerating the number either. I am a wimp. When you have lived with pain as part of your life for so long, you get so sick of it and you get to a breaking point of it’s ENOUGH. I HAVE HAD IT. Especially, with my nervous system being so out of wack. A simple scratch can send me screaming. I feel like screaming at the top of my lungs, no one touch my sensitive skin or come near me with a needle. LOL Dealing with a disease like this you don’t realize how a part of pain is in your life. You tend to think it is somewhat normal everyday part of life.

With these shots coming, I was freaking out at the thought of more needles in me, I started to fill up with anxiety.
Dr. Bergdorfs lesson: She asked me: “Emily, are you married to this pain”? I thought about it in my mind and thought well, I would rather deal with the pain I always have and not get all these shots over my whole body. Of course I didn’t tell her that. I thought for another second……..and thought wait a minute……..am I married to this pain……..?  Am I holding on to this pain…….? And my next thought was, heck no, I WANT A DIVORCE WITH THIS PAIN Dr. Bergdorf.  I want to let this pain go. I NEVER wanted it or LIKED IT! She said, “By giving you these shots you will get better. It has to be done”. As she looked over my body she said you have lost a lot of your muscles and gained fluid in its place. I can tell by the movement and by seeing it. She said my whole body was filled with fluid and that my liver is also swollen and enlarged.

I call this post, "Silver Lining", because hopefully we're close to results and answers.  Also, because this past year has been this dark cloud looming over us and I think we finally have a few rays of hope that are peeking through.

Now it’s a waiting period to see what the Dr.'s plan is. I have hope that she is the key doctor to help me. I see good results today from the treatment yesterday. I don’t dare say my good improvements, for fear of past expeirences of hope of elation and then to be let down again if it doesn't last. I don’t want to jinx it. So I am going to wait it out and really see if this is true improvement.  Time will tell……..

A Renewed Hope

The last few months I have been thinking how I can express my love and appreciation for  everyone that has helped our family so much. There has been such an outpouring of service that I really felt strongly I needed to do something.  I had the thought of bearing my testimony at church. Late at night I would lay awake and think about how I wanted to come across to people what to say and what not to. I kept getting these thoughts and decided to do it. I thought about it constantly. The only problem is I knew I couldn't stand up  there myself so Kent was wonderful in offering to do it for me. I also wanted to document my thoughts at this time and this pretty much sums it up. I hope it came across okay to people. I was so worried.

This is what I came up with:

I am sorry I am not able to be here in person today, but I wanted to express my love for you all as a ward and for the outpouring of love and support for me and my family over this last year. I feel at a loss of how to repay everyone and feel like a thank you just doesn’t give it justice.

You never know what life can bring. It can happen suddenly and you never see it coming. Life is so fragile. Cherish it.  I never imagined I would be crippled or chronically ill for so long. I have been bed ridden for over a year now. It’s hard to accept my current state and having to use a wheel chair. I didn’t know if I would make it last winter for fear of my organs shutting down, but through all this I have realized, in order to fight any kind of illness or overcome a trial in this life we need to have FAITH and HOPE.  I have realized lately when things don’t go as planned or like they should I need to keep reminding myself of finding that renewed hope within. I think of the words Try, try again. Never give up.

My family and friends help to renew my hope. I am thankful for a husband who carries me literally when I need it. I am thankful for my daughter Karlie who always asks, “Mom can I get you anything” there is not a day that goes by that she tries to give me words of comfort. “Mom you’re going to get better and I pray for you every day”. For my son Ethan always being concerned if I am in pain and he has a curiosity of what’s in my IV’s and how it works. And to my little Emma who always asks, “Mom do you need help getting your socks on”? “Can I put a blanket on you”? “I just want to be by you”. They say these things constantly. I know these little acts may seem small, but I have learned to cherish the little moments. They are my angels. How could that not be my renewed hope?  My family is my rock during this time and I am so thankful for them and hope to get better to help them instead of them helping me. I am proud of the extra responsibility they have taken on to help out.

You as a ward also play a huge role in finding my renewed hope too.

Thank you so much for the many meals brought in, thank you to the people who just have called up out of the blue and say I am bringing dinner by, thank you for the gift cards that I have no idea who they are from, thank you for the notes, flowers, the emails asking how I am doing, for the friends who haven’t given up on me. You know who are.  Thank you for mowing our lawn, thank you for the many desserts dropped off at my door step.

None of you have to do this and I know how busy everyone’s lives can be. I am sorry I have been sick for so long. But know the outpouring of love has meant so much to me and has kept me going. It has helped our family tremendously. There are seriously too many things to count, but know that I appreciate each and every one of you. I thank you with all my heart. I pray and hope I may get better soon. I have faith, hope and a determination I will someday walk fully again.

I am not sure why this is my trial in life, but I do know I need to have faith that things will work out. I do believe I am being guided in finding the right doctors and the path I am on right now. Treatment has been expensive, but we have somehow managed and I know we are being blessed with the extra work that comes for Kent to make extra money to help pay for it all. 

And then Kent said he thanked everybody.

Under Our Skin (Lymes Disease)

All I ask is you watch this movie for about 5 minutes, because I know it is long. Some of you may not know this, but I have Lymes disease that was confirmed back in July. They think the whole disease started out as Lymes and over time has manifested itself as Rheumatoid Arthritis. Below is a video I wanted to keep documented for myself. It explains a lot of how I feel and similarities of what I have gone through. About the first 5 minutes there is a girl who is very similar to how I am. Her name is Mandy with blonde hair. I am worse in my movements. Sometimes I can't move at all. The other difference with Mandy is the disease affected her speech where mine is not. Lymes disease can manifest in different ways. Luckily my brain is not affected and I am not a quadraplegic. My doctor is also at the end of this video. His name is Dr. Klinghardt in Kirkland, Washington. He is about 45:45 into the video.

http://www.hulu.com/watch/268761/under-our-skin