Coo-Coo for Tutus!!

Hear ye, hear ye! I finally have my tutu site up! I realize I haven't posted in a long time. A lot has happened since my last post. At that time I had a PICC line (permanent IV) to administer antibiotics to treat my Lyme Disease. I did really well at first! So I decided to do something to help pay for the extensive, slightly ridiculous medical bills. I started making tutus. Who would have thought that this tomboy would ever make tutus, and really enjoy it? It has also been a great hobby because it helps me concentrate on something other than the pain.

Soon after I started my business, my treatment went south and I was bed-ridden once more. After a few months of being really sick, my PICC line got infected with a staff infection that covered the space of my whole arm. So my treatment, again, had a speed bump. Soon after this happening, my husband lost his job because he, too, is incredibly ill and couldn't fulfill his hours. We are quite the pair! There was a period of time when we both were crawling around the house because we were too sick to stand! My poor little 5-year-old Cole learned much too early what its like to grab food or meds for mommy, or a bowl in case I need to throw up. He also learned that he can't wrestle too much with daddy anymore, so they would just read or color instead.  I am so proud of my little boy. What would we have done without him during this troubled time?

When Regan lost his job, we decided that enough is enough and moved back to Utah to be closer to family for help. We are living in Regan's sister's basement in Saratoga Springs, and we are both seeing a homeopathic doctor in hopes of getting rid of the toxins that all of the antibiotics left behind. Not too mention all of the worms and spirochetes left in my system. So far the treatment is kicking our butts, but we're just glad that we found someone that knows something about Lyme in Utah. Plus, having family to help means everything to us. I am so grateful for each and every one of them.

Anyway, I am a tutu-making machine, so please take a look at my website!! www.coocoofortutus.com.  I have listed many pics with prices. I accept cash or check via mail, and you can get ahold of me by emailing me or calling me. coocoofortutus@gmail.com. (860)-299-5133. You may also find me on Facebook (Ashley Radebaugh Whimpey) and chat with me there to discuss your order. These tutus make great Christmas presents!!

Thanks for supporting my treatment costs and for your friendship and love. Hope you have a Merry Christmas!! Here's a little taste. . .

Come visit my site!! www.coocoofortutus.com. Spread the word!

30 Reasons Why Having Lyme Disease Automatically Makes You a Badass

Pardon my French, but there really is no better word for "badass" for my fight with Lyme Disease. The other day I read a blog that was truly hilarious. A fellow Lymie wrote a blog entitled “25 Reasons Why Being a Lyme Patient May Automatically Make You a Badass”. I have stolen some of her ideas, and decided I should make my own list. Please take the time to read her list as well at www.infectiousoptimism.blogspot.com.

This Lymie spoke of how strange our lives are, and I think most people with Lyme’s Disease would agree. We take 6 hour jaunts to the doctor and return to a messy house full of medications and medical bills. Our fridges and cupboards are stocked full of Gluten-free products and probiotics. The only time we actually leave the house is to see a doctor, because the cold outside can literally make us cry from pain. We take one or two naps a day, and spend some good time looking up our health conditions on Google so that we can try to make sense of the life we have been given. But the best part of all of this is that it has become normal for us. Our lives may seem so strange or even tragic to an outsider looking in. But to us, it’s just life. And sometimes I think to myself, “My life is weird.”

To quote this Lymie, she said, “At this point, I could have had a pity party. Instead though, I smiled. I thought about how cool some of my experiences have been, despite how weird they truly are, and how proud I've been of myself for making it through some of the outlandish, yet astonishingly horrific things that have happened to me and to my body. I decided that this all doesn't make me weird. I think it makes me a badass.”

So here is Ashley’s list of why I am also a “badass”. This is a list not meant to make anyone feel sorry for me, but to join in the laughter that is my life. Hope you enjoy!

30 Reasons Why Having Lyme’s Disease Automatically Makes You a Badass

1. You take 34 pills a day and can swallow 6-8 at a time.

2. You watch Grey’s Anatomy and you know the names of many of the oral and i.v. medications they give to their patients including correct dosage, side effects, and reasons for needing that med. . .because you’ve had to take most of them.

3. You collapse or faint at least 5 times a day and laugh when you hit the ground rather than panic.

4. Your family calls you for advice on medical conditions and medications as if you were a pharmacist or doctor, and you usually have an answer for them.

5. You used to rock climb and backpack to be hardcore. Now your new Everests are passing kidney stones, shopping for groceries, or doing laundry.

6. You have 4 or more debilitating migraines a week.

7. Before the tick bite, you couldn’t spend enough time outdoors; sleeping on a dirt floor on a mountain was better than a bed. Now you are terrified to even sit on the grass in your front yard or allow your child to play outside.

8. You move your husband and child to the other side of the U.S. to get proper treatment without any family nearby to help through the rough patches.

9. It takes the phlebotomists at least 7 pricks to draw blood because all of your veins have been used so much they have collapsed or “dried up”.

10. You drive on the wrong side of the road because you can’t remember which side is the right side of the road. This almost results in a head-on collision going 45 mph with your 4-yr-old son in the car. And yes, my husband took my keys away.

11. You have a nickname for the come-and-go sharp-as-hell pain in your abdomen. KOBS. Kidney Ovary Bowel Stone. Because each time you go to the E.R., it is one of those 3 issues.

12. Before the tick, you were healthy and did not “believe” in medication. After the tick bite you have been diagnosed with Lyme's Disease, Ehrlichiosis, Fibromyalgia, Chronic Fatigue Syndrome, hypothyroidism, bipolar depression, anxiety, post-traumatic stress disorder, endometriosis, mono, brucellosis, a hiatal hernia, gall stones, kidney stones, anemia, distended colon, Candida, 12 lesions in brain, insomnia, and migraines.

13. Within the last 3 years you’ve had your appendix, gall bladder, and tonsils taken out. . .because the doctors just didn’t know what else to do. Oh, and the day after your tonsils are taken out, you catch pneumonia and end up in the ICU for a week.

14. You are like Bella Swan, only rather than attracting hot vampires and werewolves, you attract infectious diseases.

15. You have 21 doctors saved in your cell phone.

16. You’ve been inches from death too many times, and your husband knows how to keep you alive better than the medical staff at the hospital.

17. You’ve seen over 50 doctors in the past 10 years and all but 6 convinced you that you were not sick and that you were creating it in your mind. This eventually makes you crazy and you check yourself into the psych ward.

18. While driving, you can’t remember where you are or how to get home, and sometimes even how to drive.

19. You have to check a calendar to remember when in the world was the last time you took a shower. And usually it’s been a week or two.

20. Once in a while you have a dream that you are not sick and you wake up with tears in your eyes.

21. You’ve gone a whole month without going “number 2.”

22. You’ve had to say, “Hi. My name is Ashley Whimpey. And I have Chronic Lyme’s Disease” to a small crowd of people in a circle.

23. Most girls don’t leave the house without making sure their lip gloss is safely tucked in their purse. In your purse, you have emergency medications in case of severe pain, nausea, or an anxiety attack. In most cases, you will need to take all three.

24. You’ve had numerous IV bags full of something that an average person would never consider injecting into their veins, nor will they ever have to.

25. You’ve had a fever of 101 degrees for about 10 years.

26. Every day you have to make the choice of whether to be weak and faint from not eating and drinking, or in major intestinal pain from eating and drinking.

27. When you fill out a “symptom survey” at the doctor’s office, you begrudgingly check off 47 of the 60 symptoms listed. If you were being completely honest with yourself, you’d probably check off 52.

28. You’ve had injections thicker than toothpaste shot into your neck, back, hips, and bum, and you didn’t even cry. . .or receive a lollypop.

29. You voluntarily take oral and iv antibiotics that you know will make you feel like crap and want to die, so that one day you can be the wife and mother you have always wanted to be.

30. You’ve been sick every day of your life for more than 10 years and still manage to be optimistic enough, and brave enough, to wake up every morning and do it all again.

I had so much fun writing this list. Whenever you think your life is weird or that it is eating you up, just remember . . . YOU ARE HARDCORE!! Please everyone . . . not just Lymies. . .write your own list. I’d love to read them all.

Who needs a gall bladder anyway?

Before doctor's appointment last week:


So, I was FINALLY able to get my PICC line with i.v. rosephin for my Lyme. This is the best way to treat chronic Lyme. It is the only medication that breaks the blood/brain barrier. . .meaning that it will work on my mind as well as my body. This should help with my depression, anxiety, short term memory loss, and help me remember how to drive so that I don't all of a sudden forget what side of the road I'm supposed to drive on and take the left side of the median with my child in the car. (Yes, my husband has taken my keys away). My wonderful doctor in New York, Dr. Daniel J. Cameron, wanted to have my iv rosephin for a minimum of 3 months, bu could be up to a year. Basically, they want you on the picc until you no longer feel sick. I had mine for 2 months, and was still sick as a dog. I had an extremely hard time eating and drinking, which caused me to collapse. I could barely lift my arms or walk five steps without needing to stop and gain my strength again. Yikes. At least I only had one ER visit, so I count myself lucky!!

Unfortunately, rosephin paralyzes your gall bladder so while on the medication we stay on the gall bladder diet. It wasn't that bad, I don't eat too many greasy foods anyway. Then one day. . .NO!!!! I started having gb pain. We checked it out, and sure enough I had many stones and sludge. The doctor immediately pulled my picc out. You have no idea how upset I was. I just bawled as he pulled out the line, because this is why we moved here. For THIS treatment. And because of my stupid gall bladder, I couldn't continue.

After my doctor's appointment last week:

The damage to my gb is irreversible and very dangerous, so I am getting it out tomorrow!!! Yay! It seems a waste. The pain isn't that bad. For me, my kidney stones are worse. But hey, this way I won't have to deal with anymore passing of stones, and I will be able to start treatment over again. Just another road block. . .I'm used to those. :) Regan's mom came out for the surgery. . .the little angel. It's been fun seeing her and its been great for my boys.

So in a nutshell, wish me luck!! Lets get this gall bladder out and start this thing over again!!!

To my friend Heather,

Dearest Heather,
OH, Heather Heather Heather. I read your email late last night, and I printed it off and read it over and over again before I fell asleep. Regan read it, too. He told me, "Ash, this is how I know that we are in the right place. I have the distinct feeling like I've read this before. Much more powerful than deja-vu. Almost like I knew her even before I came to this earth, and that she would be a powerful influence in your life."

Before we moved here, we were in Utah. I had received info and labs from a doctor out here that said I must get treated for my Lyme with a PICC asap. He said I couldn't wait any longer, but that he wasn't qualified to do the treatment himself. We searched for doctors in Utah and found a few prospects. . .but something didn't feel right. We prayed so hard about where to go that would be the best place for our family. The answer came strongly to my husband. . ."Go to Connecticut." I was upset that I didn't receive such a strong confirmation. I didn't feel like it was wrong, I just was so afraid. I was afraid to leave my family, in particular my mother, who goes above and beyond to get me feeling better, and my sister, Melanie, who has helped me keep my burdens light. . .and even funny at times. How would I get through this without them?

We didn't have a place to live, a job, or even a doctor yet. We just packed up our things and headed this way. Regan picked a place on the map of Connecticut. Manchester. He didn't know why. It just popped out at him. First he contacted the bishop, and told him of our situation. Reg wanted to know if the ward was a helpful ward, with people that would understand and be able to lift us when our burdens were too great. The bishop told us that the ward was miraculous, and that we would be in good hands here. And we have found that to be more than true.

But as we searched for a doctor, we couldn't find who we were looking for. I saw and infectious disease specialist, a rheumatologist, an internal medicine doc, and many ER docs. But the answers kept coming. . ."Nothing is Wrong with You!!!" Well, you know what happened next. I felt like I was going crazy. The physical and mental pain were too much to bear. I don't believe in suicide, but I felt that it was my only option to get out of this painful body. . .and to stop placing any burden on my family. Not that I was thinking clearly. . .but I wanted to take my life. But I was reminded of the time where I actually did try to take my life 2 years earlier, and the shame that followed when I saw my son afterward was enough to never try that again. So this time I told Regan I had a problem, and would not be able to wait 2 months to see a psychiatrist. I had to see someone tonight, if I wanted to save my life for my child.

We submitted myself to the psych unit in Manchester Hospital, which, as you know, was the worst experience in my life. I was so afraid. I was treated like a parasite, like all I wanted was drugs and ropes to strangle myself with. They took everything from me, even my Book of Mormon in which I needed to feel some peace. In group I listened to the others speaking of their situations, and how they had no one. I felt so lucky for my two boys, and needed them again deeply. I was so grateful that I had a family that loved me unconditionally, even though I gave up on life. They prayed and fasted for me. They told everyone they knew to pray for me. When I was released from the hospital, I felt the power of those prayers, and the love that my Heavenly Father had for me. I couldn't stop smiling!

I wish I could say that I held onto that love from everyone. I wish I could say that I kept my faith strong, and that everything would be okay. But I still had no idea what to do about my illness, and had convinced myself that I didn't have Lyme, but that I was just crazy. Maybe we should just move home. There is no point in being here. This isn't working out. Why did God tell us to come here? It had been such a horrible experience. Why would he let me leave my family, whom I needed so badly, only to find no answers in Connecticut?

Then my husband decided to switch car insurance, because ours was too expensive. The insurance agent Regan spoke to also had a friend with Lyme. And get this. . .she lived up the street from me and was being TREATED for LYME!!! WHAT IS HER NAME???!!!!

Heather. She told me of a doctor in New York, who was the President of ILADS. The International Lyme and Associated Diseases Society. He was treating her for Lyme. He would be treating her with rosephin in a PICC line soon. Regan and I felt like the heavens were open, pouring a multitude of blessings upon us. The peace we felt was overwhelming. This was right. There was no reason to fear. I called Dr. Cameron's office, and they got me in to see him the next day. Not in 2 months, the next day. . .because they knew how important it was for me to be treated immediately. They treated me with the sense of urgency that I knew I needed in order to get better. I did not fear my appointment. I knew it was the right place. The right doctor. But 2 hours away? Why didn't God tell us to move to New York? Why Connecticut?

Which brings me to you, Heather. Only you could understand how important it is to have someone that completely understands what each of us are going through. My husband is a dear angel, who has complete sympathy for me, and has never been upset with the strain my illness brings into our lives. He has been nothing less than a miracle in my life. I could not live without him. But last night after we read your email, I tried to explain to him what it means to me to have someone with Lyme to speak to. Who was going to the same doctor, receiving the same treatment, whom I can carpool with to every appointment (in which the nurse calls us back to see the doctor as "Heather and Ashley" as if we were attached at the hip, and not as separate patients ;) ). It is one thing to have sympathy, as does my husband. But it is another thing to have empathy, as you do. It's as if, just the fact we both have Lyme brings us immediately into a place of understanding. . . after knowing each other for only 5 minutes! But it is even more than that. It's knowing what to do when one or the other of us is down, how to help each other even if it is only a phone call (me), or picking up groceries, doing my errands, making me presents, doing my medical research, and making herself sicker by doing to much for the other (you). ;)
I have found a better friend that I could have ever wished for. And I literally don't know if I would have survived without you. Literally. I was lost, and now I am found.

The thing I love the most about you, is that you remind me, all the time. . .to have faith and hope. We do not come from the same Faith (church), but our love for and from God is the same. I know with all of my heart that God loves me and does not like to see me go through the pain and heartache that i do. But sometimes when life gets harder, i.e. getting my picc line pulled out before treatment is over to get my gall bladder removed (grrr), I forget that God is there for me. You remind me of that. You have so much faith in a time without Lyme (or living a good life with Lyme), and it makes me want to believe. I hope a strive to be more like you. I am truly grateful, and I know we will always remain friends.

When Jesus Christ was in the Garden of Gethsemane, atoning for the sins and pains of the world, a miracle happened. And not just the miracle that we most think of with the Atonement. When Christ was in his toughest hour. . .feeling the most pain and sorrow. . .he prayed to his Father, "Wilt thou remove this cup from me?". Please God, take away this pain!!! God did not take away his pain, but instead sent him an angel to help him through the pain. To be by his side, when it felt more than Christ could bear alone. I have had many angels in my life. My husband, my son, my parents, my family and friends. I am so truly humbled and grateful to have a new angel in my life, named Heather. Beautiful Heather. I know that God has sent you to me, to help me through my toughest of struggles. To make me laugh and make my burdens lighter. How grateful am I?

So my love, I need you too. Let's get through this thing.

Under Our Skin

Hello again. I have been wanting to post for a while, but my story is just too long and I didn't want to bore anyone with it. But it hurts my hands too much to write in a personal journal so I am mostly writing this for myself to remember all the stuff that is happening. So journal, here is what has been going on since my trip to Utah.

After my treatment for the Ehrlichiosis, I did not feel any better. I still felt so rotten. And I still had my fevers. After we got back from Utah, I was more lost than ever about my health, or lack thereof. Then this happened:

In June sometime I was on Facebook, and out of nowhere popped up an add about a documentary on Lyme called "Under Our Skin". I had heard about it. It won tons of awards across the U.S. and Canada. But I had never seen it. I ordered a copy. I can't tell you the feelings my husband and I had as we watched this documentary. We knew that this was what was wrong. We felt the spirit testify to us that this journey of Lyme had not finished, and that I needed help immediately. Finding a Lyme doctor is tricky. Insurance companies will not pay a cent for Lyme,. . .which is a whole other story explained in the documentary. I could not find a single doctor to treat my Lyme because they were afraid of losing their licenses, which is also another story. I kid you not, a conspiracy. (You must watch this documentary! You can check out copies of it at most Libraries.) So what were we to do?

Then my husband was on the phone at work with another insurance agent. This guy's best friend, Heather, also has Lyme and was getting treatment for it. She lives up the road from me here in Connecticut!!! I talked to her at once, and she told me of a doctor in New York that is the head of ILADS, an organization that does all of the most renowned research on Lyme Disease in the world!! He treats chronic Lyme!! I called his office, they said to get down there that day because it was crucial to get treatment as soon as possible. We found all of the answers that we were looking for.

Right now I am on an antibiotic that makes me sick as a dog. It's basically the same antibiotic I took in Utah times 4. I can't get off of the couch, and am in more pain than I was even before the meds, which I never thought possible. But that is a good sign. It means that it is killing the bugs. If you catch Lyme within a month of being bit, you can take a week of antibiotics and get rid of it. (So they say). But in my case, the Lyme has been working on my body for 10 years. It is in every tissue and muscle of my body. So there is some serious "die-off" happening. It is not fun. But every time my husband holds back my hair while I heave into the toilet, I ask my husband to remind me how lucky we are that we finally have a doctor that will treat this horrible disease. And we are.

This antibiotic is not doing the trick. It is helping, but we have to do a stronger, more intense treatment. I will have a PICC line (a permanent IV in my arm) in which I will inject antibiotics every day for a minimum of 3 months. A nurse will come and dress my bandage every week and do my blood work, and I will travel to NY every 2 weeks to see the progression with my doctor. I have done this treatment before, for just 4 weeks in Utah, which was nowhere near long enough. We had to stop treatment because we were up to $20,000 in medical bills for just 4 weeks!! Last time, this treatment worked really well. But as soon as I stopped, I was ill again within a week. We are hoping with an extended amount of antibiotics, we will be able to put my Lyme into remission. It will not be easy. My friend Heather got her PICC placed a few weeks ago, and she is so ill. I am so scared to go through with this. But my wonderful mama is coming out this week to help me through the worst at the beginning. The line will be placed on Wednesday of next week. Here we go!

I know that there a horrible things associated with antibiotics. Candida yeast overgrowth. . .which I already have...and other fun things. But that is the price you pay when you are a Lymie. Oh, speaking of price, my health insurance is not going to pay for a penny of my treatment. Which was the main reason we moved to Connecticut. Connecticut has a state law to cover chronic Lyme's Disease for no less than 30 days, including PICC line treatments. But, of course, our insurance company still found a way around the law. We will fight it, but I already know how it will go. Because we have been there before. Lovely. But when you get this sick, you will pay anything to get better. No amount of money is going to keep me feeling this miserable. I thought for so long that I was being selfish for that. Sacrificing so much of my families time, resources, and hard earned money just to make me better. . .when I don't do anything myself. But then I look at my son, and think of the mom I want to be for him. One that doesn't cry on the floor to her 3 year old to go get her some crackers so she can stand up. One who can play catch with him, and smile real smiles, without thinking about the next time I can have a pain killer to take the tiniest edge off the pain. A mommy that can be there for him, for what HE goes through. Not the other way around. Health is the most important thing for our family right now. And we will do whatever it takes to get us there. Then we'll leave the rest up to Heavenly Father.

Please take the time to educate yourselves about Lyme's Disease. It is becoming more and more prevalent every day. Please watch this short preview for "Under Our Skin", the documentary about Lyme. Thanks for everyone's support. I would not be able to do this without you.

Under Our Skin - Watch Movie

Ehrlichiosis? Seriously?

Utah!! Finally!!! I am so excited to be home for a month to visit family and friends. My sis-in-law, Rachel, had to come into town for a few days, so I got to meet Devro!!! I was so afraid that I would never meet him until he was walking. He is such a sweetheart. I got to cuddle with him every night and smell his sweet baby hair and see those beautiful blue eyes staring at me with a giant smile. He's gonna be a little heartbreaker. I also got to meet Amber's little Tommy. Tommy is a miracle. He went through a lot in his first month of life, but you would never know it. He is so happy and smily that its contageous. There is never enough of that in the world, so I'm glad he could bring it to our family. Our whole fam got together and took a picture of Lee and Tani's grandkids in the backyard.

Picture from left to right

Jack, Sophie, Ellie holding Tommy, Kam holding Devro, Adam holding Brynn, Max, and Cole

Kids belong to:

Amber & John= Ellie, Sophie, and Tommy

Ryan & Lindsay= Kam, Adam, Max, and Brynn

Melanie & Jack= Jack

Ash & Reg= Cole

Kevin and Rach= Devro

It is great to be home and see everyone. . .and the beautiful mountains! I've missed them so much! I've been here for just one week, and it has been fun, but I dare-say challenging. My little story goes something like this.

About two months ago, I felt like my Lyme's Disease has resurfaced. I've been feeling all the symptoms that I know all too well become magnified once again. The daily migraines, the pain, not being able to concentrate or make decisions, the depression, the fevers. . .It didn't feel too great. I saw my doctor. I really love my doctor, except when it comes to matters of Lyme. I will later post the frustrations I have about the medical community and how split the doctors are on treatment plans and beliefs for Lyme's Disease. Some believe it is chronic if you had it for longer than 6 months before treatment. Other's believe that one week of antibiotics will kill it all and it will never come back. I, obviously, believe the former, because I have been treated and I am still so ill. I don't think my treatment was long enough. . .but that all is another story.

So as I was saying, I saw my doctor. I asked him if he would run another Lyme test to see if it has resurfaced. He said no, because he doesn't believe in chronic Lyme. He told me he was sick of hearing about Lyme from me, and didn't want to talk about it again. I told him that I was paying for the tests, so run it for me. He finally complied.

The night before my flight to Utah, the doc called. He sheepishly said that the Lyme looked good, but that I was bitten by another tick in the past few months. And not a Lyme tick this time. A Lone Star tick that carries the disease Ehrlichiosis. The symptoms are basically the same as Lyme. This tick is so rare that since it's discovery in 1998, there have been less than 3000 cases in the United States. Ever! HA AHA HA! Can you believe it? I'm so sick that I can barely go outside, yet somehow I was bit by this super rare tick that no one has heard of. How do I attract these things? I know I don't smell good, because I rarely shower and I cover myself in DEET. Maybe I have sweet-smelling blood like Bella Swan only I don't attract handsome vampires and werewolves. I attract tick-born infections. So anyway, the doctor put me on an antibiotic, so I've been pretty sick on my trip here in Utah trying to kill the little pests. But I am so grateful that we found out this early so that it didn't wreck too much havoc on my body.

Hilarious.

My New Life

I'm sure most of you know about Christian and Stephanie Nielson. In 2008, they were in a horrible airplane accident, which led to Stephanie having burns over 90% of her body. Christian is my cousin-in-law's brother, and such a sweet-heart. I've never met Stephanie, but I feel like I know her as I'm sure many others feel through her amazing story and open discussions about her journey of healing. She and Christian are such an inspiration to me.

I don't like to compare my trials with others' trials, because it makes me feel guilty for not doing better in my circumstance. Many feel that it is good to compare trials, because it makes you grateful for how much better your life is than theirs. I know that my trials are nothing compared to the trials that others feel. Especially sweet Stephanie (Nie Nie). But one thing I know is that my trials are the most I can handle, although at times I don't know if I can handle them at all. I don't like to compare trials. . .

But I DO love to gain strength through the examples of others as they strive for healing of body and spirit, such as Nie Nie. I have had the opportunity to meet some amazing individuals on this earth, whom have help me grow so much. I hate to think of the pain they have had to go through, so that I could learn my lesson and be grateful for what I have. . . But then again, I am comparing.

I am grateful that those who go through so much pain, sorrow, and illness. . .hold on to their lives. There have been two specific times in my life where I have tried to end my life because of my pain and anguish both physically and mentally, but my dearest husband saved me. I am grateful for this. One of my favorite stories in which I feel deeply ingrained, is "The Lord of the Rings" series. I feel so close to Frodo, as he fights a battle that he never thought would even be a part of his life. As he fights not even half of his battle, he wants to give up. He doesn't believe he can go on. More importantly, he doesn't want to go on. So he trusts in his dear friend, Sam.

Frodo Baggins : I can't do this Sam.

Sam Gamgee: I know. It's all wrong. By rights we shouldn't even be here. But we are. It's like in the great stories, Mr. Frodo. The ones that really mattered. Full of darkness and danger, they were. And sometimes you didn't want to know the end. Because how could the end be happy? How could the world go back to the way it was when so much bad had happened? But in the end, it's only a passing thing, this shadow. Even darkness must pass. A new day will come. And when the sun shines it will shine out the clearer. Those were the stories that stayed with you. That meant something, even if you were too small to understand why. But I think, Mr. Frodo, I do understand. I know now. Folk in those stories had lots of chances of turning back, only they didn't. They kept going. Because they were holding on to something.

Frodo: What are we holding on to Sam?

Sam: That there's some good in this world, Mr. Frodo... and it's worth fighting for.
--- Lord of the Rings: The Two Towers

I have the good. I have what's worth fighting for. My husband. My son. My family. They are fighting for me as much as I want to fight for them. Maybe even more. I love looking in my husband's eyes and feeling true acceptance for my many faults. I love laughing with him until our bellies ache. I love that his laugh is even louder than mine! I love his sensitivity, for he doesn't compare his many trials with mine. I love looking at my son after he's in bed asleep each night. I always kiss him and tell him how proud I am of him. I tell him I love him. I become reflective of the blessing he is in my life. I want to squeeze him forever and never let him go.

I know that Heavenly Father has spared my life, so that I can continue to learn about the most important healer, Jesus Christ. When I feel lost with questions to my health problems, I begin searching for the answers through health journals, the internet, and my many doctors. I have every test done, try every medicine to see which one can alleviate any of the pain. Sometimes I feel that my illness is "too complicated" to get better just through prayer and faith in Jesus Christ, which I know isn't true. But my mind tricks me into thinking that I can only get better through the aid of doctors and medicine, so I just give up all together and don't even ask God for help at all. Why do I do this?? I don't know. But I do know that I have had glimpses of time where no amount of pain medication or around the clock care is even close to helping me get through one more minute. . .so I ask for a blessing. I have no other option to live. The blessing gives me peace for a moment. Reminds me what it feels like without pain. For just a moment. That is what I hold on to. That I can feel like that again.

Stephanie was interviewed by our church, The Church of Jesus Christ of Latter-Day Saints. Here is her interview. She said a phrase in here that hit me so hard and I just sat here weeping. "My name is Stephanie Nielson, and I am NOT my body."

I have let my illnesses take over my spirit. I have let my illnesses label who I am and determine everything I can or can't do. I pray that I can learn this important lesson that I have gained through Nie Nie. . . "I am Ashley, and I am NOT my body."

In the name of Jesus Christ, Amen.