Chronic Illness Survival Blog

I'm back...

2010-08-26T22:09:00.007-07:00

Don't forget it's National Invisible Chronic Illness Awareness Week. Check out the website. There are a ton of great articles, resources, and videos.

It's been a crazy summer with a new foster baby, work, church stuff, traveling and lots of visitors, but I'm back in the blogging world. Surprisingly, I can honestly say that I'm happier now living with an illness than I was when I was healthy. I found the following great article that reinforces how I feel.

10 Things I’ve Learned From Chronic Illness

August 20, 2010
Jamee over at A New Kind of Normal shares some of the things illness has taught her:

There is some truth to the old adage “What doesn’t kill you will make you stronger” (even though I think that things that in fact may be killing us can still make us stronger). After my initial diagnosis I never thought that I would ever be able to be strong again but the past 7 years have taught me that I am stronger now than I ever was.
Sometimes you need to be like Gibbs and go with your gut. If you feel like something is not right, it probably isn’t and you need to learn to be your own advocate. Ask questions and push for answers. While you cannot trust everything you read on the internet, it is important to research and educate yourself.
Sometimes laughter is the best medicine. When I’m feeling blue, popping Finding Nemo can do wonders for my spirit, especially now that I can share it with my daughter. Dorie is a great doctor :)
Doctors are not always right and there is nothing wrong with asking for a second opinion. I’m not sure my Celiac would have ever been caught had I not sought a second opinion.
Buy cute pajamas to wear after surgery. It gives you a little bit of pampering when you need it most. If you know you’re going to be donning a hospital gown for a couple days, buy cute socks. Believe me, after 4 surgeries, it goes a long way!
Finding a support team/group is absolutely essential. I do not know if I would have ended up where I am today with the support of others. After my endometriosis diagnosis I was lucky to find GirlTalk (an online support group through the Endo Research Center) that I became a member of and now serve as the Program Director. During our infertility treatments, I found a wonderful group of ladies that provided support and encouragement. It doesn’t matter if you find a support group that meets in person or online. Knowing that you are not alone gives you strength to keep fighting the fight.
Cereal can be a perfectly acceptable meal for breakfast, lunch, and dinner.
Your faith gets challenged. While I never doubted God and His grace and love, I had my share of questions. And it was through the wrestling and searching for answers that I learned more about God than I ever did in seminary. Not that I have all of the answers to my questions. In fact I may have more questions know than ever but I know who I serve and I know that I can trust His character and that that is enough for me.
Find an outlet whether it is blogging, painting, or songwriting. Healing comes when we open ourselves up and acknowledge our hurts, hopes, and dreams. When I began this blog in 2007, I would have never guessed how redemptive it would become to my faith and health.
You are more than your disease/diagnosis. It is important to never ever lose sight of that. I am determined to let the world know that while yes I may have multiple illnesses, I am a person and a warrior and I will not be overcome.

Jamee is a wife, and a mom. She says, “I am also a warrior battling multiple chronic illnesses. In life, I have learned that sometimes things happen and life doesn’t always go back to the way things were. Instead, you must find a new kind of normal. ” Read her blog A New Kind of Normal.

Thank You Family and Friends!

2010-06-05T09:21:00.024-07:00

Wow, a lot to post about. You know I love a random post, so here I go...

I've been amazed at all the wonderful support we're receiving for our sweet foster baby. It's wonderful to have so many people treat him so wonderfully and serve us so much even though it's not your normal 'new baby' situation. It means so much to us. I just wanted to say thank you Mom and Dad for your visit, gifts, and all the love you gave him! Thank you for getting up in the night with him, for treating him exactly the same as all your other grand babies, and for welcoming him into the family so perfectly. Thank you book club (Kristi, Jaime, Katie, Meredith, and Alisha) for the shower you surprised me with. It meant a lot to me since our future with this baby is uncertain. Thank you Ully for the gift card. You are the sweetest. Thank you Liz, Leslie, Virginia, Deb, Kenna, and Deborah for the clothes, toys, and yummy food. Thank you Krist, Diana, and Steve for the packages with cute baby stuff! Thanks Amanda and Thevs for cuddling him so much at beach. Thanks Abs and Linds for the gift. I love the Puma outfit and all the awesome baby stuff! And thank you everyone else for the emails, phone calls, blog comments and offers to babysit! Our sweet baby is so grateful for all the love. And Catherine, you're the best. I am obsessed with your artwork. That is by far one of the best gifts I've been given!(If anyone's interested she can customize one for you. Just let me know and I'll get you in contact with her.)

I've noticed there's a great support system out there for new moms, I'm really grateful for that. As for chronic illness it's a different story. I thought I'd list some things that friends and family did for me during my most physically painful and exhausting times that helped to pull me through. Thank you family and friends for your examples of selfless service. I know oftentimes it's difficult for all of us to know how to serve someone that deals with different levels of physical illness day in and out. I want to raise awareness so that we can create a similar support system for people struggling with illness...

1. Meals
2. Hopeful packages
3. Calls, emails, or FB messages,
4. Financial help with the insurmountable medical bills and the inability to work
5. Asking how I was doing and really listening for the answer
6. Cleaning house
7. Showing genuine concern
8. Flowers
9. Small and simple thoughts to let me know they cared
10. Prayers
11. Advocating for me to others who don't understand chronic illness or invisible physical illness (when I don't always look sick, but feel it)
12. Researching new info on my disease
13. Remembering that it was a daily struggle and continuing to support and asking how they could help

Thank goodness I'm at a point where I can focus more on what others need instead of being in so much pain that I'm incapable of doing much. Thank you everyone for your amazing support during the last crazy painful years of my life. I'm in a much better place cause of all of y'all!

More good news...Yeah! I did a 10k. I walked it, (cause running increases my pain) but I did it. I feel grateful that I've come so far.
Woohoo!

parents...(finally)

2010-05-22T08:22:00.009-07:00

So we got placed with a 2 month old foster baby this week. I can't say any details about his situation, but I can say that he is really adorable. We are so grateful he's in our home. His circumstances for being placed in a foster home are sad, but we feel blessed we can love him and keep him safe.

He smiles at me often and looks at me with so much love. He is precious. I feel like I've been given a million dollars and that nothing in the world matters as much as him. We don't know how long he'll be with us, but we hope we can be good parents to him while he is here.

Balance

2010-04-16T08:16:00.011-07:00

Living with chronic illness requires a delicate balance between what I can and can't do. Thankfully I never thought I'd be able to do as much as I'm doing now. But obviously there are still things I wish I could do. I wish I could eat whatever I want, hike a trail, do some weight lifting (ha ha isn't that a random wish), sleep through the night, be able to function free of medication, get pregnant, go a day without pain, or even just run a mile without any pain.

Even though I can do a lot more now, people sometimes can't understand why there are times when I can do certain things and times when I have to cancel. They think "I saw her yesterday and she was fine. Why isn't she here today?" or "Why did she have to cancel again?" I read the following essay on this great chronic illness blog. (I'm not sure why she chooses to use spoons. Maybe just a random object to create a visual, but the principle is what matters.)

The Spoon Theory by Christine Miserandino

Let's face it. No matter how understanding people are, sometimes it's just daunting to explain our illness time and again to new people or even to the people we already care about. It's tiring. But if someone cares enough to read it or hear about it, the Spoon Theory sticks! In case you're pressed for time, I'll summarize: Imagine a bunch of shiny, dinner spoons in your hand. Each time you spend a little energy, take one away. So for someone with chronic illness, a spoon might be taken away with the simple act of getting out of bed (I know that's true for me). Miss breakfast because you're running late? Take away a spoon. Miss the bus and have to walk a few extra blocks to make it on time? Take away two. And if you have chronic illness, it's more than likely you have much fewer spoons to start with anyway...

That's the genius of the Spoon Theory. It helps people who are chronically ill help people who are chronically healthy to understand; to see that every decision and circumstance throughout the day has some kind of effect. Things most people don't even think twice about. In my days, everything must be measured and weighed. This can be very frustrating (even downright depressing). Whatever it is you feel, remember that you're allowed to feel it. Don't waste your spoons on feeling bad... about feeling bad! Most of us put so much pressure on ourselves to be strong and not let our illness "beat us", but why look at it this way? Chronic illness, by definition, is not going away -- so it's best not to make an enemy out of it (at least that's what I've found).

I give myself time to feel however I feel about my "spoon deficit". Sometimes I'm just pissed off. I want to cry or scream. Sometimes I'm actually quite motivated by it all. Sometimes I'm confused and questioning why life is just a little harder for me. Sometimes I feel proud that I've come this far without a full "spoon count". Sometimes I want to pull the covers over my head and give up or even pity myself (but this one can be tricky...I think it's important to put a time limit here, which I'll explain in a future post). No matter how we spin it, having fewer spoons isn't fair and it's more than okay to have a reaction to that. In fact, wouldn't it be strange if we didn't care at all? The way I see it, that apathy would mean someone else was in the driver's seat. Our feelings show we're still tuned in to our lives.

I might sound confident, but only recently am I starting to really own my limitations; to explain them to others without guilt. I owe a big part of that to the people who are now in my life (who I'll definitely single out later, don't you worry guys). These friends aren't easy to find, but they're out there. They've lightened this load for me and always, always understand. That brings me to the next point about the Spoon Theory. Of course, it's not all about LOSING spoons! Have a great talk with a friend? Laugh a little? Get a spoon or two back...there's no better medicine. Get a care package from a family member? Cuddle up with your dog? You'll definitely be up a few more. It's all a balance and it forces us to really think about our actions and weight what's important to us. I think that's the good that can be found here.

Instead of spending time feeling cheated, hurt or sad about our illness, is it possible that we can see our lack of spoons as an opportunity? It does make us stop and think about things other people don't have to, but here's an example of the unexpected good. Because of Spondylitis, I've come to realize who I can count on...who the people worth spending my spoons on are and who will replenish my spoon count. I've found ways to shorten my tasks at work because I have to. I've come to appreciate nights when I do have enough energy left to actually cook or clean - things I might otherwise see as mundane chores. Simple walks are tremendous pleasures. In some ways, dealing with illness can make you more efficient and much more appreciative of the spoons you do have. Thanks for reading :)

Thank you to all my friends and family that add spoons to my days :) And thank you to all my friends that understand when I have to rest, and I have to cancel plans. Love ya!

Suffering and Healing

2010-04-12T09:08:00.018-07:00

Sorry it's been so long since I've posted. Life has been so crazy. We also had our first semi foster parent experience caring for a little girl for a few days. I LOVED it. Learning about some of her emotional healing and reflecting on my own physical healing prompted me to do a post on suffering and healing. Now we all know I can be pretty random, so bear with me while I try to put my thoughts into a post.

Suffering: If you allow yourself to feel sorrow and pain, it can bring you to be exactly where you need to be. Pain has the potential to purify us. It's interesting how in our culture we avoid pain at all costs and we push through it, instead of allowing it to work through us. In Mark Matousek's book, When You're Falling, Dive, he travels the world interviewing survivors of pain and misfortune to discover the meaning of suffering. He notes:

...terror can be a door to enlightment...Our prevailing contemporary view of pain and loss as handicaps to be avoided at any cost is...wronghanded. Terror is fuel; wounding is power. Darkness carries the seeds of redemption. Authentic strength isn't found in our armor but at the very pit of the wounds each of us survive.

Dr. Rachel Remen, one of my favorite authors, was diagnosed at a young age with Chrohn's disease. She talks about how

healing is a mysterious process whose principles often contradict reason. Working with thousands of patients, shes has learned how often the body's intelligence defies expectations...The body is hardwired to persevere. If I cut you, your body will heal stronger than before.

She continues

When we try to avoid loss or plow through our pain, our lives are actually diminished. On the other hand, there's an extraordinary wisdom and clarity that emerges in people who genuinely meet their pain, not in theory but in life...the process of wounding actually awakens us to our strength. It shuffles our values. And the top priority is never what you thought it would be...It always turns out to be about love.

Through the suffering there can be transcendence and even perfect glimpses of what really matters in this world.

Now in regards to physical healing: When is comes to illness, something I've come to learn is that it's complicated. A lot of times we think that if you're sick surgery or a pill should fix you, and if it doesn't, then you have cancer or diabetes. We're not educated enough on the different levels of illness and how they can be treated, as well as how they affect daily life. My illness isn't cancer and it can't be fixed with just a pill or surgery (believe me I tried). But I am healing, and even though it's incurable and chronic, I've learned how to somewhat to manage it through medication, diet, level of activity, rest, physical therapy, massage, and exercises. I still struggle with less sleep, pain, fatigue, and I visit the doctor often, but I can manage the pain more than I ever thought possible. I'm also able to live a relatively normal life.

I also know my healing is also the result of hard work, research, faith, and blessings. They all work together. Here is a link to a video that talks about the tender mercies of the Lord. He's taking care of us.

The-Tender-Mercies-of-the-Lord

Recipes and Food Rules!

2010-03-13T15:03:00.025-07:00

First, thanks everyone for the best wishes! I'm really grateful for your wonderful support during the foster parenting process. (I will keep y'all posted, but there are a lot of rules regarding the children's privacy, so we won't be giving too many details from here on out.)

Second, I need some new recipes. Has anyone made something recently that's yummy and healthy that they could email me or post in the comments? I'm desperate for some new food ideas. (Don't worry if your recipe calls for stuff I can't tolerate, I'm really good at finding substitutions for just about any ingredient!)

Doesn't it seem like everyone you know right now has a cold or recently had a cold? Here's a recipe I wanted to share. I was sick with a cold a week ago and invented this really amazing chicken soup. I'm not a good cook, but this was super easy. It did the trick too--my cold didn't last long at all. Here's a yummy way to get a ton of veggies into your diet. (Only use the veggies you like. You don't have to use them all.)

Ingredients:
2 48-ounce boxes of Swanson's chicken broth
10 green onions, sliced (1 cup)
1 cup carrot, diced
1 cup celery, diced
3 teaspoons dried fines herbes
1 teaspoon pepper
2 teaspoons garlic, minced
3 bay leaves

1/2 cup broccoli and/or
1/2 cup tomatoes and/or
1/2 cup corn and/or
1/2 cup zucchini and/or
1/2 cup squash and/or
1/2 cup peas and/or
1 cup spinach

2 1/2 cups packaged noodles (5 ounces) (I like more veggies but you can add more the chicken or noodles if you prefer a more equal ratio of chicken and noodles to veggies)
1 9-ounce package frozen diced cooked chicken (about 2 cups)

1. In a pot combine chicken broth, green onions, all veggies (except spinach), fines herbes, pepper, garlice, and bay leaves. Bring to boiling; add noodles. Cook and stir until the mixture returns to boiling; reduce heat.
2. Cover and boil gently for 7 to 9 minutes or until noodles are tender (don't overcook). Add chicken and spinach to soup; heat through. You can freeze leftover soup. It's sooooo yummy!

I read this really great book by Michael Pollan called Food Rules. It's only $5 at amazon and it has simple, perfect advice for eating healthily without feeling overwhelmed. You can read it in 30 minutes max and it is extremely helpful. Here are some rules I liked from the book.

Populations that eat a so-called Western diet generally defined as a diet consisting of lots of processed foods and meat, lots of added fat and sugar, lot of refined grains, lots of everything except vegetables, fruits, and whole grains--invariably suffer from high rates of the so-called Western diseases: obesity, type 2 diabetes, cardiovascular disease, and cancer.

1. Eat food, not too much. Mostly plants.

2. Avoid food products that contain more than five ingredients...(The more ingredients in a packaged food, the more highly processed it probably is.)

3. Avoid food products containing ingredients that a third-grader cannot pronounce.

4. Avoid food products that make health claims. (For a product to carry a health claim on its package, it must first have a package, so right of the bat its more likely to be a processed rather than a whole food...Generally, it is the products of modern food science that make the boldest health claims, and they are often founded on incomplete and often bad science. The healthiest food in the supermarket--the fresh produce--doesn't boast about its healthfulness--...because [it] doesn't have the packaging.)

5. Eat only foods that will eventually rot. (...the more processed a food is, the longer the shelf life, and the less nutritious it typically is. Real food is alive-and therefore it should eventually die.)

6. Stop eating before you're full.

7. Plant a vegetable garden if you have the space, a window box, if you don't.

8. Cook. (...Cooking for yourself is the only sure way to take back control of your diet from the food scientists and food processors, and to guarantee you're eating real food and not edible food-like substances, with their unhealthy oils, high fructose corn syrup, and surfeit of salt. Not surprisingly, the decline in home cooking closely parallels the rise in obesity, and research suggests that people who cook are more likely to eat a more healthful diet.)

9. Eating what stands on one leg [mushrooms and plant foods] is better that eating what stands on two legs [fowl], which is better than eating what stands on four legs [cows, pigs, and other mammals).

10. Break the rules once in a while. (Obsessing over food rules is bad for your happiness, and probably for your health too.)

Speaking of healthy eating, my husband and I joined a Community Supported Agriculture program. We pay $5 a week for 3 lbs. of locally grown fruit that we pick up from a farm that's down the street from where we live. You can't get any fresher than that. If you're interested you can find a CSA program near you at localharvest.org.

It's official! We're certified foster parents.

2010-02-26T19:21:00.002-07:00

We got the call yesterday. We passed the homestudy process. We're now licensed for foster care. It's been a tedious process, but well worth it. Thanks everyone for your phone calls and support during this emotional time. Love you.

My guilty pleasures, healing arsenal, and vision for 2010

2010-01-03T12:34:00.046-07:00

It took me a while, but I've almost mastered the art of caring for myself, so I can care more for others. So indulge me why I list what my guilty (or not-so-guilty) pleasures of 09 were, what healed me this past year, and what my plans are for 2010!

My favorite things of 09:

-beach trip with family
-dark chocolate: Yum! Full of antioxidants, no artificial ingredients, organic, and fair trade certified. Just an occasional guilty pleasure from Whole Foods or World Market.
-herbal tea: Herbal tea is so calming and healing. I love this sweet cinnamon spice tea warmed up with milk and honey to sweeten it.
-brother returning from his mission
-reading some close to perfect books (The Glass Castle, Left to Tell, The Book Thief, Pope Joan)
-smoothies, sushi, coconut ice cream
-a place to live with a fireplace and a garage (Necessities for snow days.)
-my husband starting his Phd and lovin it
-new and old friends
-Death Cab concert in the mountains
-farmer's market
-Fit TV; all kinds of exercise routines almost any time of day and being well enough to exercise
-Hautelook; If you want designer clothes (nice quality, comfy, soft, long lasting clothing) for Target prices, Hautelook is the best. I've bought a few things and am NEVER disappointed. Everything I've bought from there has been under $20!

-Shikai; I LOVE this hair care. It's all natural and it's safe for colored hair. It extends the life of your hair color by weeks and weeks and weeks and weeks. It uses natural things like henna to make your hair look blonder, or redder, or darker, and shinier!

I always get the question, what's healing you? Oh, sooooo many things. Especially the medicinal marijuana. (Just kidding, just seeing if you're paying attention.)
So here's my list of what's healed me in 2009:

-friends and family (all my adorable nieces and nephews)
-faith and lots of prayer
-lots of hard work micromanaging all aspects of my life that increase my pain
-fish oil, vitamin D, and acidophilus (healthy bacteria; good for digestion)
-the perfect combo of medications (took awhile to find the right mix for such a complicated illness, but I'm finally there!)
-physical therapy
-my T.E.N.S. machine (I could not exist without it. It keeps my pain to a minimum.)
-ice, ice, and more ice. (Those with pain know ice is a miracle for us!)
-lots and lots of veggies
-less acid
-no milk or gluten
-deep breathing
-natural cleaning and beauty products (Less chemicals equal less inflammation, and yes inflammation is the battle I'm constantly fighting. Less inflammation equals less pain.)
-less stress
-love and laughter
-exercise (I'm able to do it everyday now, yeah baby!)
-blogging (Reading and writing of course. Keep writing girls, your posts lift me!)
-meditation (Lovin Eckhart Tolle. First person to every successfully get me to shut my dang mind off!)
-walking, walking, and more walking
-sun
-volleyball
-good movies (Silly chick flicks, as well as the deep thought provoking stuff.)
-taking care of myself and then others
-work (Yes work, when you're pain is less and work becomes real again, it heals you.)
-music
-parties (Can't forget the parties. They are my fave!)
-cooking healthy meals for my hubbie
-service, helping others heal from illness

My vision of 2010:

I read on Kris Carr's crazy sexy life blog that she has a vision board for all her dreams of the new year. It's just a cork board where you put somewhere special and you decorate it with your creative dreams, ideas, and goals. My husband and I made one with our creative, family, career related goals. Here's ours and the tools that Kris Carr suggests to make your own:

Vision boards work because they allow you to turn your dreams on. They create a path that leads to action. Look at your vision board like a road map, allow yourself to believe that you are powerful beyond measure and that you deserve to live your best life. Your vision board can be a very helpful compass. But it’s not enough to post stuff and then sit on your sofa and do nothing. Plot and plan your attack! Your tools: magazines clippings, prayers, sayings, quotes, paper to write stuff on, scissors, glue & poster board, thumb tacks & cork board, imagination, freedom, and a positive attitude, childlike whimsy, giggles, and a sense that anything is possible. 2010 is the perfect time to start a board. You have nothing to lose – well, except doubt and the blues. Share your powerful stories with us! We’d love to see your boards and hear how they’ve transformed your life. Peace and thumbtacks, Kris

Some of my own ideas: Become a certified nurses assistant to boost my resume. Get a job as a caseworker. Take a trip with my husband and my girlfriends. Foster children in need. Adopt. Read really great books and not just the informative ones. Forgive, forgive, forgive. Start a book club. Dance. Smile. Kick the rest of my pain in the butt with lots of physical therapy. Exercise everyday. Be a good friend, sister, aunt, wife, and daughter. Serve, serve, serve.

All I wanted for Christmas was a baby...

2009-12-24T09:08:00.010-07:00

So I asked for a baby for Christmas but I didn't get one. Lame. Maybe I'll get one next year?

My husband and I hope one day to be parents (the sooner the better), and I hope one day to be pregnant. In the mean time--although the wait can be extremely tiring and trying--I can be positive. The more you struggle, the more you have empathy for others struggling. I also look forward to being a mom one day so I have more empathy for the mom's in my life too. (Love you girls!)

I have a lot of friends and family members that have kids. I've heard a lot of discussions among them about 'What not to say to a preggo woman,' and I hear a lot of discussion about how people without kids 'just don't understand what it's like to have kids'. There is amazing advocacy out there for new moms and pregnant women, which is awesome cause they completely deserve it! I'd like to start a conversation about advocacy for people without kids, and who can't have families the conventional way, or as quickly as others. There aren't as many of us, so maybe this type of advocacy isn't given as much thought. So while I am careful about what I say around moms or pregnant women, I'd also like to call for similar courtesy towards us non-moms.

So here's a list of what not to say to women who don't have kids, and who aren't pregnant (No exaggeration, these are real life things that have been said to me and my friends who are struggling to have families.)

1. It's your turn to be pregnant! (said by a preggo woman to a friend of mine struggling to have children).
2. Holidays must really suck without kids. I would be so bored on holidays, if I didn't have kids, like you guys.
3. Being a mom is so awesome, you should really give it a try.
4. Why haven't you had kids yet? You must not be into the kid thing?
5. What is taking you so long to start a family?
6. You just really don't get what it's like to be a mom. You have no idea, being a mom is seriously the best thing ever.

Just some thoughts. This isn't a bitter post. Seriously, there are no hard feelings. I know most people have really good intentions. I just wanted to raise some awareness. And most importantly I'd like to thank all the wonderful people in my life that hug me when I'm sad about not having a family, and are always sensitive and supportive as we try to start our own family. I feel blessed to have so many supportive people around me!

Health Care: What the?

2009-12-19T05:50:00.000-07:00

I'm interested to know what y'all think about the health care reform that is currently taking place. Also, how do you feel about our health care system in general? Please comment and let me know! This should not be a partisan issue; it should be about relieving people's suffering.

In light of current health care reform taking place, I read this really great book The Healing of America: A Global Quest for Better, Cheaper, and Fairer Health Care, by T.R. Reid. I loved this book! The author travels around the world to see how other developed countries manage health care. He discusses what is and isn't working in other systems and then explains ways in which we can incorporate aspects of other successful systems into our own (without completely revamping the current system). Here are some of the strengths of the other systems that I found interesting.

1. England gives incentives to doctors that keep their patients healthy. In the UK "the greatest boon to...almost every other British general practitioner, has been an experimental payment called the Index of Quality Indicators. It's an effort to pay for results--to give a doctor more money if he treats his patient successfully and keep them healthy..."(122-123) This is a wonderful way of marketizing preventative medicine.

...modern epidemiological studies make it clear that preventative medicine--the discipline sometimes called public health--trumps individual treatment as a means for keeping large numbers of people healthy, wealthy, and wise...at a time when national health care budgets are stretched to the last penny just caring for the sick, it can be hard to find additional money for preventative treatment of those who are healthy. This means the health system needs a strong incentive--an economic incentive--to invest in preventative health care. Of course, governments invest in preventative care out of basic altruism; it is government's job, after all, to protect people. But it helps considerably if there is an economic motivation--an incentive structure that encourages the system to invest in prevention. Public health costs money--billions of dollars per year in the major economies--and the return on that spending may not be seen for years or decades. To get serious preventative care, therefore, you need an incentive structure that encourages long-term investment. This is where the national health system comes in. In a nation with a unified health system that covers everybody--which is to say, all the industrialized democracies of the world except the USA--it clearly benefits both the population and the system to invest in public health. But in a fragmented, multifaceted-system nation like the United States, the economic incentives for preventative care are dissipated. With numerous systems and payers, the temptations is to shift the expense of preventative care to somebody else. (185-186)

2. In France they save insane amounts of money by using digitialized records. "This carte vitale (green plastic credit card)...contains the patient's entire medical record, back to 1998 ...and it is the secret weapon that makes French medical care so much more efficient than anything Americans are used to...That's why French doctors and hospitals don't need to maintain file cabinets full of records. It's all digitized. It's all on the card. In addition to the certainty of the process and the resulting peace of mind, this national billing system creates major financial savings...the expensive layer of paper handlers found in every corner of American medicine doesn't exist in France." (57-59)

3. Many of these countries have privatized doctors and hospitals, but they use not-for-profit insurance companies that compete for prestige. So for example, "...on a national level, Germany offers universal care through private insurance that is available to everybody. The intense rivalry among the sickness funds demonstrates that there can be elements of the competitive free market even in a nonprofit health insurance system." (81)

4. Many developed countries subsidize medical school for doctors so they graduate with little or no debt.

I'm grateful in many ways for my own personal health care system struggles (getting denied coverage because of a 'preexisting condition,' getting many claims denied for no reason, etc.) because it opened my eyes to an important cause I can be passionate about! I only wish I had been an activist in this cause long before it became personal. Most of us think it won't happen to us, and we may be critical of others suffering through it, until us "hard working, healthy, educated people" get sick and lose coverage.

People who are uninsured are 25% more likely to die of treatable diseases than people of the same age cohort who have insurance...the Institute of Medicine concluded that 18,314 Americans die each year because they don't have health insurance and thus can't get the treatment that would save their lives...by 2009, there were some 45 million Americans who spent at least part of the year without health coverage. The Americans who suffer and die are not, for the most part, homeless or addicted or desperately poor. Most of those who die for lack of medical treatment in the world's richest country are working Americans who run afoul of the nation's complicated and restrictive health insurance labyrinth, both public and private. (208-209)

I've learned that there is no perfect health care system. I know we can learn from other successful developed nations and strengthen the weak links in our own system. Most developed nations successfully provide care for their citizens with privatized doctors and hospitals; yet the needy or struggling are still cared for. There are very few developed countries that implement true socialized medicine principles; yet like I said, everyone gets care.

All the [developed] countries like us have already made the essential moral decision--every person shall have access to a doctor when needed--and all of them have developed mechanisms to make that guarantee a reality... all the other rich countries provide high-quality, universal care, and yet they spend far less than the United states does. (162)

When pollsters ask the basic question--"Do you think everybody has a right to medical care when they get sick?"--More than 85 percent of Americans answer that health care is a basic human right. And yet our nation does not provide it. The result is that the world's richest nation allows twenty-two thousand of its people to die each year from treatable diseases. (217)

D. Todd Christofferson said that "Throughout history, the Lord has measured societies by how well they cared for the poor" (read the rest of the address here). It's important that we remember those that are poor in regards to health care, and it's essential that we take a stand for them.

Boring

2009-10-18T16:54:00.045-07:00

Laying in bed sick can get incredibly boring! I'm able to do a lot more now, but I still have to spend a significant part of my day resting/recovering and that can get old. Being in the house a lot has forced me to be creative with things to pass the time. It's good to have FUN when you're suffering. I'm not the craftiest, stay-stay-at-home-making-goodies-in-the-kitchen kind of person. I'm more of a go-out-and-do-active-fun-stuff kind of girl, but being sick and stuck at home has helped me find new talents! And finding new talents is good for your brain according to Martha Beck. She says...

In his fascinating book The Talent Code, Daniel Coyle describes how the brain reacts when a person develops a new skill. Performing an action involves firing an electrical signal through a neural pathway; each time this happens, it thickens the myelin sheath that surrounds nerve fibers like the rubber coating on electrical wires. The thicker the myelin sheath around a neural pathway, the more easily and effectively we use it. Heavily myelinated pathways equal mad skills.

When I first got sick I was mad I couldn't do all the things I used to, and I was not loving the idea of having to find new talents, but thankfully I have awesome friends that showed me that you can do creative crafty stuff at home that isn't super cheesy or difficult. (Love you girls!) I thought this post might also be useful to my stay-at-home mom friends and my friends who are caretakers to a sick spouse. (Thanks for all your awesome 'pass-the-time' ideas!) Here are some fun stuff you can do while you're stuck at home.

1. Halloween Decorations: We painted pumpkins this year which is really fun! You can paint them with a spooky theme or a fall-ish theme.

I got this other idea from my girl Mary Ann. (She's my crafty idol). Some spooky decor...

Here is a website she sent me with fun Halloween treat ideas...
www.ourbestbites.com
Go to the website to get details on how to do it. All you need is some mason jars, mod-podge, and tissue paper.

2. Like I said, I'm not the craftiest person, but I love making stuff and being creative. Here are some things my friends have made. Some of them have even made it profitable to be stuck at home. Scanning etsy.com can inspire you with all kinds of creative ideas!

3. Knitting sounds so grannyish (not that there's anything wrong with granny's) but it is so relaxing. (This was another great idea from my friend MA). I promise it's really easy! You can buy kits, yarn, and flowers at Michael's craft store. It's really inexpensive.

In addition to these crafty projects, here are some other activities that may help you pass the time (and have some fun).

4. You can try out Netflix. The movies come straight to your door if you can't get out. You can get TV shows and watch some right away on your computer. (I recommend The West Wing- 7 awesome seasons. I love Gilmore Girls and the new show Community is hilarious.)

5. Start a book club. I loved the last book club I was in. It doesn't take a ton of effort, it's a one hour a month commitment to meet up, and it really passes the time. It got me passionate about reading and gave me new ideas of books to read while I was taking time out in bed. Connect with other readers on GoodReads

6. Become an activist. Find something you're passionate about. Read, research and get the word out through blogging, Facebook, email about how to help. Even if you're not mobile or physically capable of helping, you can do a lot from your home to help.

7. Serve. Try to find one person a day you can serve. I know it may seem difficult when you're sick and/or stranded, but you can still serve from your home. Even if it's just a phone call, note, or donation. You can do important loving acts of service. Early during my illness I felt inspired to pray everyday and ask "Who needs me to today?". I'm grateful for that inspiration, the opportunity to serve has in so many ways carried me through the most difficult days. Everyone can use a little love. I'm so grateful for the phone calls, card, emails, gifts of money, and packages that my sweet friends and fam sent me while I was extremely ill. I will never forget your examples of service!

P.S. I'm always looking for new ideas so please share if you have any!

Take another picture with your click click click click camera...

2009-10-02T17:00:00.000-07:00

The title of this post is from a song I love by Bishop Allen. Okay, I've been driving my husband crazy with all the pictures I've been taking. I just tell him that I've spent the last few years sick and in bed, so now I have to document every time I leave the house :) Every time we do something fun, and I feel healthy and 'normal,' I want to remember it. I will never take living regular life for granted again! I know the blessings of working, going to a movie, eating out, going on a walk, getting a full nights sleep, and so on can be fleeting and are things we can not take for granted! Everything looks so beautiful when you're not in a ton of pain. So here's a pic of a big milestone for me. (I've gone out of my way to keep my identity and location anonymous on here because I have readers that I don't know. I figured this pic isn't too telling of what I look like.) It's a pic of me playing a VB game for the first time in 3-4 years. Yeah!!! My sweet husband offered to document it for me. It's a good thing I'm somewhat 'back in the game' 'cause I'm helping coach the church volleyball team.
Being sick has changed my perspective on everything. Including simple things like doing the dishes. I love to do the dishes because if I'm doing them it means I'm well enough to get out of bed and stand for a while! I had a professor tell me this story once. It really helps to put things into perspective.

Sometimes, as humans, we only see things from a narrow perspective. We look through the keyhole of a door and assume we see the whole picture. Imagine you are walking down the street and you hear screaming behind a door. You run to the door where it's coming from. You can't open the door. It's locked. You peak through the keyhole and see several masked men with knives surrounds a screaming woman strapped to the table. You panic and try to open the door. You are scared to death.

What you don't realize is that if you were in the room with her and saw the entire sequence of events that led to her being strapped to the table, instead of just a short keyhole perspective, you would know that she needed an emergency c-section to save her life and the life of the baby. You would see that the masked men are doctors not murders. If you were in the room and saw clearly what was happening from the beginning as well as after the surgery, you would see her alive and holding her baby. You would see her thanking the 'masked men' for saving her life. We see the crisis in life and panic trying to fix it. God is in the room. He sees the beginning and the end clearly. He has complete perspective, and He knows what we need. (Dr. Randy L. Bott)

Work, adoption, foster parenting...

2009-08-16T16:04:00.004-07:00

So, big stuff is going on right now. I'm finally feeling functional enough to start working 10-15 hours a week, so I applied to some jobs and got 5 interviews within a week! All of them pay well and are less than part-time, so I'm feeling really grateful and blessed. I've had all the interviews but one, and I've already been offered 2 of the jobs. Yeah! I've been feeling better and better, so I'm going to move forward and hope for the best! I love feeling like I'm living a relatively normal life.

As for adoption--my husband and I are starting foster training and adoption preparation. It's kind of overwhelming to think of caring for a child 24/7 when you're only partially functional. Thankfully though, the process for adoption requires several months of training followed by even more waiting. By the time we have the opportunity to foster or adopt, I'll be ready to be a full-time mom. I have a lot of experience working with children. So, I'm hopeful that I can be a good mom, but I want my pain levels to be more stable first. I would never take a child into my home without being able to adequately care for him or her.

I feel like our decision to adopt started long ago in my heart. It started way before I knew I wouldn't be able to have a family in the way that most people do. I've been prepared and excited for this moment. Unfortunately though, I go to the meetings and feel so great about this decision, but then I go home and cry my eyes out because it still isn't easy! Planning a family this way takes a lot of patience and trust: 1. Adoption is really expensive. 2. There's a long waiting period. 3. Adoption agencies scrutinize every aspect of your life. 4. Since there aren't too many people who adopt, you may not receive the same support that a pregnant mom would. Because of the difficulties that adoptive moms face, you especially deserve a typical baby shower and lots of supportive understanding people around you. And you don't deserve any judgment passed on you by those who don't understand your situation.

One of the first things they asked us to do in the adoption meeting is to let all our friends know we're preparing to go forward with the adoption process. If you guys here of anyone (over the next year or so) wanting to put their baby up for adoption, can you please let us know? We are so grateful for you helping us start our family.

As for foster parenting. I've always wanted to be a foster parent. I saw the results of abuse and neglect when I worked for Head Start and it made me passionate about helping and loving children in need. Of course, it's not easy to be a foster parent either: 1. You have to go through lots of training. 2. Foster children are usually taken from their home because of neglect, drug/alcohol or physical abuse. So, there are usually huge behavior, physical, and emotional difficulties. 3.Foster children may stay with you a year and then return to live with their parents, and you will never have contact with them again.

That being said, I would love to be able to help children in need until their parents are able to really care for them. We haven't yet been approved for either adoption or foster parenting, so please pray for us! We're just beginning this journey and hope it ends well. We really appreciate all your prayers and support.

Missing In Action

2009-07-20T13:01:00.006-07:00

Hey my beautiful friends and bloggers! I'm sorry I've been missing in action. My husband and I just made a big, stressful move! Here is a picture of one of the first things we did in our new state. We went to see Death Cab for Cutie. And I'm so excited because I was able to sit through a concert! I did have to bring a pillow and get up and move around a lot, but that is a huge accomplishment for me, considering how high my pain levels can be. Yeah! It was a huge blessing. A year ago I would never have seen myself going to a concert--I was just too sick.

One of the songs they played at the concert was a song my husband and I listened to on our first date. We have been through a lot of stress, and I'm grateful to look back and see how far we've come since that first date of ours. Since there's a high rate of divorce among individuals with chronic illness, here's a post on how to fight right and not let the stress of chronic illness ruin your marriage. Some of this is from my psych studies, some from religious leaders, and some from learning to make a marriage work with chronic illness in the pic. Not an easy task! Only for the strongest and the bravest of us for sure...

1. Delegate. What can your family and friends help with that will ease the burden on your spouse?

2. Choose your battles. On a scale of 1-10 (10 being the most important), what number is your concern? If it's not an 8,9, or 10 then let it go.

3. Fight Right. Disagreements are okay and healthy in a marriage. Contention isn't okay. If a discussion gets heated, step back. Get space between you and your spouse for a half hour. While you're taking some space, put yourself in his/her shoes.

4. A family that prays together, stays together.

5. Use scheduled time each week to evaluate your marriage. Set goals, and kindly express expectations. Make sure you keep these sessions brief and that you use "I" statements. For example: "I feel sad when you..."

6. Always be honest. Keep your commitments. Write them down if you need to.

7. Keep the lines of communication open. I can't stress this one enough. Instead of stewing about something, open up a discussion about it.

8. Have one night a week where no serious matters are discussed. Just have fun. If you have kids, have someone watch them. You could call it your 'date night.'

9. Get away.

10. Allow each other time to grow in the relationship. What is, is. Be at peace in the present. Focus on that little sparkle until it shines! (Gordon B. Hinckley)

My husband and I saw the movie Fireproof recently. Check it out! It discusses the difficulties in marriage and suggests some ways to show love to your spouse and strengthen your relationship. Although it doesn't specifically address chronic illness, the lessons it provides will be helpful for all those working to better their relationships.

Am I of Worth?

2009-07-02T20:48:00.005-07:00

Here is the link to an article I wrote. It's published in the Ensign Magazine. If you are feeling really inadequate because you are too sick to do much of anything, this article is a good reminder that you are of worth. I know that our Heavenly Father loves us, even if we are, at times, too sick to do much of anything. He understands.
http://alturl.com/rqpg

Help! I'm stressed!

2009-05-15T15:43:00.017-07:00

I was up last night in a lot of pain, so I got up this morning pretty STRESSED out. I'm making great improvements in my pain levels. But when the pain comes back, I hate it, so I freak out. So here's my de-stress routine. Everyone is different, so make your own list to get you through stressful and/or painful days! And post a comment, letting me know what works for you!

1. Have an anti-stress smoothie.

1/2 ripe banana

1 cup frozen raspberries or blueberries or both

1/2 TBS honey or agave nectar (Sweeteners that are better for you than sugar)

1 cup spinach (Yes spinach. You can't even taste it at all. You're kids won't even know they're drinking a vegetable)

1/2 cup milk (If you're worried about an IC pain flare take prelief and aloe before you drink the smoothie)

2. Listen to music, breathe deep, do yoga, dance, or take a walk. (If you suffer from chronic pain make sure that you exercise, but that it is always gentle.)

3. Help someone--it always helps me de-stress. My cousin's little girl is only 10 and she is going to have her 3rd open heart surgery. Talk about stress! You can register to run a 5k to help her. For more information, go here.

4. Try chamomile and peppermint herbal tea. Both are really relaxing. (I like the Twinings brand because they are gluten-free.)

5. Create something. Don't try to make it perfect or it might stress you out more. Enjoy the task more than the end result. Martha Stewart just came out with an Encyclopedia of Crafts.

I don't usually love her stuff but there are some really classy, simple ideas in the book. Also you can get ideas by going to Etsy and looking around.

6. Blog of course! Or I love reading a good book.

7. Create a safe space. Surround yourself with people that support and uplift you. If someone stresses you out, they are not allowed in your healing space. Most chronic patients have enough deal with already so you have every right to remove people from your life that add to your pain.

8. Get away. If funds are tight, you can get away to a hotel across town. With the recession, you can stay in a nice hotel for $50 using priceline.com. This is good advice when, like my sister who has triplets, there is no time or space to do the things on this list! Sometimes you have to leave the kids, or work, or doctor's appointments behind and go away to de-stress!

4 Years!

2009-05-02T22:27:00.002-07:00

When I first met my husband, I was really sick. I felt like I was drowning. Doctors were having difficulty diagnosing my illness, I weighed only 90 lbs, and I was literally wasting away. I had the thought, though, that I would find someone who would save me from 'drowning' and love and support me through the pain. Without sounding too contrived or cheesy, Benjamin is that person. When we first started dating, I was scared to tell him I was really sick. But when I finally got up the courage to tell him the details of what I was dealing with, his immediate response was "Well then I'll take care of you." This week was our 4 year anniversary! Yeah! I don't want to gush too much (it embarrasses him) but I feel like he deserves lots of applause!

Our early years of marriage have been far from normal. Benjamin has spent most of his 20's as my caretaker. I’ve always been a very independent person so it hasn’t been easy for me, but I am so grateful for him. When I’ve questioned my worth or when others sometimes would look at me with misunderstanding, Benjamin has reassured me and told me I was amazing. He is unfailingly supportive. He's sacrificed so much for me and for our marriage. He's given up awesome well paying jobs that he loves, to go work retail with a Master's degree, so that we can have good health benefits. He works long hours to support our family. He put his schooling on hold and moved with me to a place where I could get better care. He is the most loving, selfless, patient, hard working, and amazing person I know. I feel blessed he chose to marry me!

Let me share a quote that has helped strengthen both me and Benjamin. Elder Orson F. Whitney wrote: “No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude and humility. All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God..."(quoted in Improvement Era Mar. 1966, 211).

Finding Balance

2009-04-09T15:37:00.012-07:00

On the subject of balance...

I recently had a debate with a friend. He assumed that because I'm taking supplements and going to an acupuncturist that my doctor uses only alternative medicine and treatments that haven't actually been scientifically proven. It made me evaluate what I have been communicating on my blog. I have found a group of doctors that implement research-proven treatments. As patients, we have to be very careful about what advice we take and what treatments we get. I always research and get a second opinion before I follow someone's advice.

There needs to be a balance in medicine. Sometimes patients can get disillusioned with western medicine. In response to that disillusionment they can go too much in the opposite direction. I have been to websites and blogs where traditional medicine is denounced, extreme health practices are supported, and where all balance in life is sacrificed for unbalanced cures and treatments. Medicine, diet, physical therapy, supplements, herbs, acupuncture, surgery, research, and prayer are all helping me with my pain. IF I tried too much of only one of these things I wouldn't find success. Extremes aren't healthy.

Balance in everything is essential to finding relief and happiness in life. Too much of one thing isn't healthy for us. If someone recommends that you only eat green veggies or only drink liquids, think twice before you follow. Be careful about following sites on the internet that have lots of testimonials and no outside research to support their claims.

Balance Rocks! You are wonderful and can find help and balance for your ills. Now go sign up for your optimism email. You'll feel better. Good stuff is happening!

Sick Around America

2009-04-02T08:45:00.004-07:00

Frontline did an amazing show this week entitled "Sick Around America." It's about our nation's failing health care system. You can access it here.

Funny, interesting, and true...

2009-03-01T13:49:00.001-07:00

Regaining hope

2009-02-09T22:09:00.000-07:00

I'm starting to regain hope. The last few years have been difficult, but our wonderful family and friends, thankfully, have shown me and my husband incredible support. Things were pretty bleak, having little money, sometimes being out of work, struggling with illness, etc. I'm relatively good at finding the silver lining among the crap, but there were times when the negatives seemed to overwhelmingly outweigh the positives. So my hope stayed, but it was challenged like it's never been challenged before. Now, as things finally start to fall into place, there is light at the end of the tunnel, and answers to my prayers are coming, I'm trying to regain hope. I'm trying to remind myself, that things will be okay. But it's difficult--I'm scared of returning to the bleakness. But thankfully I'm slowly regaining hope, and with hope comes faith that gives me power to go forward with confidence and an assurance.

As many of you, with this recession and the burden of illness, are on the brink of a possibly difficult future, just remember there is hope. Replace fear with hope and it can fill you and carry you.

For I reckon that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us...But if we hope for that we see not, then do we with patience wait for it. (Romans 8:18, 25)

Forget the guilt!

2009-01-25T18:57:00.000-07:00

So this is my new year's resolution: Forget the guilt! I made a lot of mistakes last year. All this healthy eating, exercising, and managing illness stuff isn't easy. So, I'm getting rid of the guilt and moving forward in 2009 with no regrets and no guilt! Yeah!

I am seriously getting burnt out on all this bettering-myself and caring-for-myself stuff. Don't worry; I'm not abandoning everything that I've been working so hard to do to maintain a life with less pain. And yes, I will faithfully continue to write all the wisdom I'm gleaning from my research and real life experiences. I'm just taking a moment to chill and be grateful. I just talked to my best friend on the phone and we realized that life can sometimes suck the fun out of you. My chronic illnesses definitely demand a lot of my time and tons of my energy, which can, in turn, leave me depleted and suck the personality right out of me. And now that I'm kicking my chronic illnesses to the curb, fun Em is back and excited to be alive. I'm making new year's resolution to eat dark chocolate and watch lots of awesomely-pointless movies! Happy New Year everyone!

Time to celebrate!

2009-01-23T10:03:00.000-07:00

Yeah! I have really good news! At one point I was so ill that I weighed a horrible 89lbs. I have worked very hard over the past few years to put back on all the weight that I lost, and now I'm finally back to my normal body weight. My husband reminded me that it's time to celebrate because I'm healthier! So I'm celebrating! I think I'll go eat some Rice Dream Ice Cream and gluten free cookies! :)

Chronic illness can be overwhelming when it comes to loving yourself just the way you are. It's important to be happy with the skin you're in! Take care of yourself and realize you're beautiful. Focus on your good attributes and become involved in something low-key that you're passionate about!

Check out the film Real Women Have Curves. It's a great movie with America Ferrera about embracing our flaws and recognizing how being unique is beautiful.

How you do feel about the popular trend in the media that you must be a certain size to be considered beautiful? How do feel about societal pressure to be a certain cookie-cutter look in order to be considered pretty? Feel free to comment!

Chronic pain awareness

2009-01-22T18:04:00.000-07:00

In The Doctors' Guide to Chronic Pain, it explains what happens when someone is in chronic pain. The more you understand about why your body is in pain, the better you will be able to treat it.

When pain obeys the rules, it follows an understandable pattern--you hurt, you heal, and the pain goes away. So why does pain sometimes continue taking its tortuous toll beyond its usefulness as a response to injury? The answers (to the extent they're known) lie in the brain and nervous system...The nervous system, it turns out, is not just a static conduit for relaying signals--it is an actively changing participant in the pain process. While pain generally starts with a physical cause, when it persists it can cause peripheral nerve fibers at the site of the injury to become more sensitive so that even the slightest touch can feel excruciating, a condition know as allodynia.

Also, think of the way you react when pain first strikes. You flinch, you cringe, you guard the injury by tightening your muscles. These are normal reactions and may not produce any lasting harm in the short term, but over time they can kick off a process that leads to more pain. For a example, tightening your neck and shoulder muscles in response to a migraine headache may cause pain in those areas that persists...all of which can be aggravated by pain-related loss of sleep.

As pain persists, it can cause changes or damage to the nervous system itself, a concept known as plasticity, which scientists are only beginning to understand. In addition to nerve cells becoming hypersensitive, unremitting pain appears able to:
-Make damaged nerve fibers fire spontaneously and intensely, often producing a burning sensation similar to electric shock.
-Reorganize connections between nerve fibers so new connections are formed to produce pain that otherwise wouldn't have existed.
-Change the chemistry of pain processing so that endorphins are prevented from dialing back the volume on pain, perhaps due to a genetic deficiency.

Understanding that such changes take place--and gaining insights into how they work--is a major advance in pain medicine that points the way to potential new treatments. (p. 28-31)

A New Year (we hope) of Change

2009-01-22T14:26:00.000-07:00

Here is an excerpt from a great article in this month's Vogue magazine. By posting this I'm not taking a particular political stance. I know that people are imperfect, but I'm hoping this will be an important beginning for our country. We need to all pull together in support of humanity and progress.

This month, President Obama embarks on as tough a term of office as possibly any president before him, save perhaps FDR and Abraham Lincoln...But we at Vogue...have always believed in and celebrated the American genius for adaptation and self-renewal. In particular, we have always valued those who share our view of change: It is not a matter of enforcing one's will on others but of inspiring others to follow. Change is about making choices, but choosing change for the good is an expression of our humanity. We recognize in our new president an actual rather than a notional compassion, an impressive and unapologetic intelligence, and the self-assurance of a natural leader. We will, of course, duly discover his limitations, and in the years to come we will no doubt argue with his judgment. But we are all entitled to beginnings and their excitements; and at this hard beginning America may, and indeed must, look to its new leader with a smile...Onward and upward. --The Editors

The Yes Patient

2009-01-13T18:42:00.000-07:00

"The best prescription is knowledge."
--Dr. C. Everett Koop, former Surgeon General of the US

In Western culture we are taught to trust doctors and completely follow their advice. I went for help with my illness with full faith in my physician. I was the "yes patient." Following his orders exactly, I had several expensive and painful surgeries. It wasn't until later that I learned that some of the surgeries he wholeheartedly recommended were outdated and often made symptoms worse in patients with my illness.

It's very important to get a 2nd and 3rd opinion when it comes to surgery or expensive treatment options. It's important to know what tests you're being given and why they're being given. It's important to ask questions, research, and know what medications you are taking, why you're taking it, and what it does. Now, I have a team of doctors that I can trust. I can follow their advice and know that it will improve my condition. All of their suggestions are supported by current research and I know this because I've learned (the hard way) that I always have to do my homework.

The En-Light-nd Woman....

2009-01-13T09:54:00.000-07:00

One of my good friends directed me to this great blog. It's all about living a life of health, happiness, and energy. I think y'all will really like it! Just remember that balance is key. Any treatment or advice that goes to extremes isn't healthy. Here is one of her awesome posts (click on the light blue words to go to her web page):

THE EN-LIGHT-ND WOMAN blog
Low Energy? RELAX!

How relaxed/ tense we are has a direct effect on our energy level and our energy level affects our health. In fact, our level of heath is pretty much connected to our level of energy.

Supplements can help produce energy but they can’t increase energy storage. A relaxed body has more energy storage capacity then a tense one, and, if you’re too tense, then your body won’t be able to store the extra energy it’s producing.

To understand why this is so, recognize that muscles expend energy when they contract. Contracting muscles allow us to move, lift, walk, run and perform our daily activities. However, each time a muscle contracts, it is discharging energy. A muscle rebuilds its charge when it relaxes or elongates again. In its relaxed, elongated state, it has an energy potential that is ready for the next discharge.

Nerves do a similar thing- thy build up an electrical charge, which is then discharged as the nerve sends a message. In order to send another message, the nerve must rebuild its electrical charge. When a nerve becomes exhausted, a person becomes “shaky”. The nerves can no longer hold the charge and fire rapidly, releasing their energy before they are fully recharged. This causes muscles to tremble and makes the person feel unsteady.

Both muscles and nerves are able to rapidly alternate charging and discharging, but there is a limit to how many times this can be done before it needs some rest to fully recharge.

Our bodies are much like the battery in our cell phones. As we use our phones then charge them and use them and charge them, the capacity of the battery to hold a charge has gradually diminished. So, the reason fatigue has increased as we age is the same reason our cell phone battery doesn’t last as long as it once did- The tired muscle can’t hold as much of an energy charge as it once did.

Solution:

RELAX our muscles. Stretching and breathing is very important. Yoga is a perfect exercise to do both.

Get better sleep. Try Nutri-Calm, GABA plus and Calcium and Magnesium from Nature’s Sunshine Products.

Take short breaks. Leave the computer, sit down, and stand up. What ever you need to remember to relax and elongate your muscles.

BREATHE. Inhale, exhale.

Hurt

2009-01-08T18:17:00.000-07:00

Love Yourself

2009-01-05T15:32:00.009-07:00

"I must learn to love the fool in me--the one who feels too much, talks too much, takes too many chances, wins sometimes and loses often, lacks self-control, loves and hates, hurts and gets hurt, promises and breaks promises, laughs and cries. It alone protects me against that utterly self-controlled, masterful tyrant whom I also harbor and who would rob me of human aliveness, humility, and dignity but for my fool."
--Theodore I. Rubin, MD

There are going to be a lot of layoffs this year. Here's how to protect your job.

2009-01-04T16:10:00.000-07:00

There are going to be a lot of layoffs this year, so I thought this post would be helpful. If you're well enough to work full-time, try and protect yourself so you don't lose your health benefits. Here are steps that Money magazine lays out to protect your job (or your spouse's job) during this recession.

Fireproof Your Job (Money Feb. 2009 p.80-84)
1. Increase your value; keep on top of advances in your field and expand your expertise beyond your core area.
2. Go beyond your job description; look for problem spots that you can help fix. And pitch in whenever extra hands are needed.
3. Stand out and step up; Make sure higher-ups know you by solving problems and taking on high-profile projects.
4. Don't be a Debby downer; hang out with the people the boss respects the most. The halo of their good reputation may extend to you.
5. Be a money maker; share client leads or ideas to generate revenue even if that's not part of your responsibilities.

Lame-ish Awesome Year

2008-12-28T14:15:00.000-07:00

I look back on this past year and think LAME! I spent a lot of time in pain, in bed, and at my doctors' offices. I spent this last year in medical debt. I feel like it's constantly two steps forward and then one step back. It's been frustrating to come to terms with the fact that my illness will always be around.

But I also look back and am grateful for this year. Before my chronic pain started, I lived a crazy, busy, active, A.D.H.D life. Now that I've been forced to sit still for awhile, I'm amazed at what I've learned. It has been miraculous how I've been blessed to find treatments that help, and even though I'll still endure some level pain for most of my life, I have found ways to make it more tolerable and manageable. Yeah! I found out who my real friends are. I grew closer to the people serving and lifting me. I learned insane amounts of lessons about myself, life, and people. I learned to really listen to my body, I learned how to confront my fears, and I learned we are surrounded by miracles. Merry Christmas and Happy Holidays! Thank you again for all your nice comments, prayers, thoughts, and phone calls.

And on a less serious note, watch this really funny clip. Laughter is good for pain :)

Do you have irritability, headaches, joint pain or depression?

2008-12-28T07:35:00.000-07:00

If this article interests you, just click on the link.

"Are You Walking Around With Celiac Disease and Don't Even Know It?"

via Carbwire by jimmy on 12/15/08

Alice Bast founded The National Foundation for Celiac Awareness in 2003 Have you or someone you know been to see doctor after doctor about joint pain, headaches, chronic pain, infertility, tingling in your body, depression, irritability, and other such issues only to be told they can’t find anything wrong with you? Frustration can set in [...]

Know your heart

2008-12-06T15:22:00.003-07:00

Here is a beautiful story and prayer from Dr. Remen. Hopefully it can lift our spirits!

Recently during a physicians' seminar on listening, we all took out our stethoscopes and spent several minutes listening to our own hearts. We are all middle-aged people and for the first little while everyone anxiously diagnosed themselves, fearful of hearing a split S1... or a third heart sound. But as time went on, we moved past all that and heard something steadfast in the midst of our lives that had been there always, even before we were fully human. Our lives and all other lives depended on it. It was a profound and ineffable encounter with the mysterious. Most of us were deeply moved. We had auscultated and diagnosed hearts for years, but none of us had ever experienced this before. In that moment we had glimpsed something beyond our habitual way of seeing and hearing and knew that what we work with every day is life itself...Afterward there was a silence. Then one of the cardiologists present began to speak about his work and to wonder aloud how one could be so close to something holy and not know it. It reminded him, he said, of a prayer that he had heard some time back. Somewhat embarrassed, he began to recite it aloud:

Days pass and the years vanish and we walk sightless among miracles. Lord, fill our eyes with seeing and our minds with knowing. Let there be moments when your Presence, like lightening, illuminates the darkness in which we walk. Help us to see, wherever we gaze, that the bush burns, unconsumed. And we, clay touched by God will reach out for holiness and exclaim in wonder, "How filled with awe in this place and we did not know it."
Dr. Rachel Naomi Remen, My Grandfather's blessings, p.70

Miracle

2008-11-28T14:07:00.020-07:00

I am feeling grateful for many things this Thanksgiving! I'm grateful for yummy gluten free food, for fun games, and fun times! I'm grateful for a husband that makes me laugh everyday! I am grateful for Gilmore Girls reruns and chocolate pie.

I am overwhelmingly grateful for knowledge and for good doctors. These two things have helped me to find ways to manage my pain and live a better life. I'm grateful for what I've learned from the pain that I have experienced at such a young age, because it will enable me to better serve and uplift others throughout my life. I am also grateful that my life--now with more manageable pain--will be more beautiful and fuller than I ever imagined it would be.

I am very grateful for friends who live good lives and who are selfless and kind. Just today our friends gave a us a gift of money that a group of our friends put together to help us pay down some of our medical debt. I've had the feeling that somehow the burden of our medical debt would one day be relieved. Today was an answer to some of those prayers. I am very grateful Penrose 80! We hope we can return the favor and help all of you as well! We are humbled by your thoughtfulness and will be forever grateful for your love and support.

What to do when money is tight and it's the holiday season?

2008-11-23T10:12:00.005-07:00

Money is tight for almost everyone right now, and considering the health care crisis, it can be especially tight for patients with chronic illness. Here are some more financial tips. I'm sure as readers you have lots of ideas on how to save money. Feel free to comment with added financial advice! I'm always interested in learning more ways to save money!

1. Whenever you go shopping always bring a list and stick to the list. I am the worst at this. I can't go to Walmart or Target without a list, otherwise I will leave with things that I think I need because I pass them as I'm shopping. Make a Christmas list, budget ahead of time, and stick to the list.

2. I've given my email address to the stores where I often do my Christmas shopping during the holidays. I've already received a lot of emails from them with promotional codes for free shipping or discount coupons that I can print and use in the store. If you don't want your email inbox full of ads, create another email account that you use only for stores and companies you're interested in receiving coupons from. Kohl's has a promotion right now, if you give them your email address, they will send you a $5 coupon. My husband and I each did this to save $10 on our Christmas shopping.

3. You can also google the name of a store along with 'promotional code' or 'coupon' to find additional offers.

4. Google also has a feature where you can type in the name of an item as well as 'price' and it will give you the stores with the lowest prices on that item. Or you can text google from your phone and they will text you back the stores with the lowest prices on a particular item.

5. If you are able to pay off your credit card in full, 100% every month, you can get a card with rewards points and use them for Christmas shopping or winter clothes shopping. We put medical bills and gas purchases on our credit card and use cash for all our other purchases. We pay our card off every month and never carry a balance. We use our rewards points for gift cards to stores like Old Navy, Gap, and TJ Maxx. New clothing usually isn't an added expense for us; we get it for free using our rewards points. We've never payed any fees to our credit card company, so basically they're paying us to use their card.

6. Since I'm back to my normal weight I can't fit in my winter clothes from last year. I've taken a lot of my summer shirts and layered long sleeve tees under them so I don't have to buy too many new winter sweaters.

7. If you have medical bills but money is tight right now here is a tip: Make sure they aren't gaining any interest. If so, make a token payment of a few dollars for the months of November, December, and January. It is better to make a small payment rather than no payment at all. If you are making small monthly payments they won't send your account to collections.

8.You can turn your water heater down. That way you'll use less hot water on a daily basis and your bill will be a lot lower.

The Road to Home

2008-11-21T13:50:00.000-07:00

Amy Macdonald sings a lovely song called The Road to Home. Listening to this song made me grateful for friends. It doesn't matter how long it's been since we've seen each other, when we talk or get together, it will always feel like 'home.' Chronically ill or not, they will always be there for me. I am grateful for you guys!

All of us are on the 'road to home'. Let's strengthen each other on the way. If you know someone that's suffering, take a moment today to do something kind for them.

Oh the leaves are falling from the trees
And the snow is coming, don’t you know?
But I’ll still remember which way to go
I’m on the road, the road to home

Oh the sound is fading in my ears
And I can’t believe I’ve lasted all these years
But I’ll still remember which way to go
I’m on the road, the road to home

Oh the light is fading all the time
And this life I’m in it seems to pass me by
But I’ll still remember which way to go
I’m on the road, the road to home

Now I must say good bye
Keep telling myself “now don’t you cry”
But I’m here where I belong
I’ll see you soon, it won’t be long
I’ll see you soon, it won’t be long
I’ll see you soon, it won’t be long

Dissolve Physical or Emotional Pain

2008-11-21T09:58:00.000-07:00

There is a balance in dealing with pain. It's crucial to acknowledge and care for physical or emotional pain, but don't get enveloped by it. Listen to your pain, address it in the ways you need to or know how to, and learn from it. If you suppress the pain or ignore it, it could possibly increase. After you have listened to the pain (emotional or physical) and tended to it, and it chronically persists, then it's time to redirect your focus to what isn't hurting and to what is working. Once you've done this, you've found the balance in pain. And you've practiced an important life lesson.

Chronic pain patients are often given the advice to focus away from the pain and channel that focus towards the parts of their body that aren't in pain. This technique is very effective. Try it... If a part of you is in physical pain try to think about the parts of you that aren't in pain. Focus in on those parts, let yourself feel gratitude for the lack of pain in these parts. And if your pain is emotional rather than physical, focus on the things in your life that cause you no emotional pain but rather lift your spirits.

At first I was scared of the pain, so I ignored it. I crowded my mind and life with busy, productive distractions from the pain. After a while, the internal physical pain started to scream at me so I would listen. I stubbornly fought against it, but eventually I listened and worked hard to calm it. There is a certain amount of pain that still persists no matter what I do, so I'm learning to focus away from the pain.

Simple

2008-11-17T20:00:00.003-07:00

Keep it simple! In the article "The Best Organics for the Buck" (O Magazine October 13, 2008), Karen Springen outlines the most important organic foods to focus on buying when you're tight with money. I know, I know, it's one more thing to worry about. I thought so too, and I also thought organic food was for hippies or rich people. But studies show that organic food is more nutritious, so it's worth the extra cost. The more nutrition you can get when your chronically ill the better able you are to manage your disease. And even if you're not chronically ill, the sooner you start eating organic food or locally grown food the better. Karen recommends the following specific organic food investments (investments for long-term health)!

In the article Karen recommends if you drink a lot of milk, it's good to buy milk organic. "There are so many hormones and antibiotics in many brands of conventional milk" says environmental activist Deidre Imus. Studies show that organic milk can have more nutrients.

The Environmental Working Group has found the following fruits and vegetables have the highest level of pesticides "cranberries, nectarines, peaches, strawberries, pears, apples...sweet bell peppers, celery, cucumbers, tomatoes, peas, and lettuce. Some of the least contaminated fruits are those with removable peels, like bananas, citrus fruits, pineapple, mango, and avocado." (O magazine, p.78).

Remember to Breathe

2008-11-10T14:00:00.002-07:00

One of the best ways to free our feelings is to breathe into them. Deep breathing assists us in several crucial ways. Physically, it cleanses our body of air that has been sapped of life-giving oxygen, replacing it with fresh, rejuvenating air. Interestingly, studies show that when elderly people practice deep breathing for only a few minutes a day, their memories improve dramatically. Psychologically, slow, deliberate, deep breathing allows us to move below surface feelings into an awareness of casual, root emotions that may be breeding discomfort in our lives.

Sue Patton Thoele, A Woman's Book of Confidence

I am the worst at this advice. I keep myself distracted, so I don't have to really feel the pain, but that also keeps me from really feeling things and from truly breathing. I have to remind myself to stop, breathe and feel. When I do stop and take deep slow breathes it clears my head and rejuvenates me.

Music is therapeutic

2008-11-05T15:43:00.011-07:00

I love the lyrics to this song, Can't Go Back Now, by the Weepies. The songs I included on my playlist are more than just songs I like. They have lyrics that uplift and that also resonate with me and other chronically ill patients. You can read the lyrics here or listen to the song on my playlist on the right hand column of my blog. Music can be very therapeutic when you're in pain.

Yesterday, when you were young,
Everything you needed done was done for you.
Now you do it on your own
But you find you're all alone,
What can you do?
You and me walk on
Cause you can't go back now.
You know there will be days when you're so tired that you can't take another step,
The night will have no stars and you'll think you've gone as far as you will ever get
But you and me walk on
Cause you can't go back now
And yeah, yeah, go where you want to go
Be what you want to be,
If you ever turn around, you'll see me.
I can't really say why everybody wishes they were somewhere else
But in the end, the only steps that matter are the ones you take all by yourself
And you and me walk on
Yeah you and me walk on
Cause you can't go back now
Walk on, walk on, walk on
You can't go back now

Wrestling with the Angel (Image: The Wrestling of Jacob and the Angel by Chagall)

2008-10-20T15:14:00.040-07:00

In Rachel Naomi Rehem's book, a national bestseller, My Grandfather's Blessings, she recounts the beautiful story of Jacob wrestling with an angel as her grandfather once told it.

Sometimes a wound is the place where we encounter life for the first time, where we come to know its power and its ways. Wounded, we may find a wisdom that will enable us to live better than any knowledge and glimpse a view of ourselves and of life that is both true and unexpected. Almost the last story my grandfather told me was about a man called Jacob who had been attacked in the night as he slept alone by the bank of a river...He awakened to find himself gripped by muscular arms...It was so dark that he could not see his enemy, but he could feel his power. Gathering all his strength, he began to struggle to be free.

'Jacob was a very strong man, but even using all of his strength he could not free himself..." "How long did they struggle, Grandpa?" I asked with some anxiety. 'A long, long time...' he replied, 'but the darkness does not last forever. Eventually it was dawn and as the light came, Jacob saw that he had been wrestling with an angel...Jacob's leg was hurt in the struggle. Before the angel left, he touched [Jacob] on the place where he was hurt...He touched it to remind Jacob of it. Jacob carried it all the rest of his life. It was a place of remembering.' Looking back on it, I have wondered if my grandfather..had not left me with this story as a compass. How tempting...to put the struggle behind you as quickly as possible and get on with your life. Life might be easier then but far less genuine. Perhaps the wisdom lies in engaging the life you have been given as fully and courageously as possible and not letting go until you find the unknown blessing that is in everything." (p.25-27)

This quiz will save you from getting sicker, and help you age slowly...

2008-10-13T18:32:00.045-07:00

Answer these questions from the book The Anti-Inflammation Zone by Dr. Barry Sears to see you if have internal silent inflammation:

Are you overweight?
Are you always craving carbohydrates?
Are you constantly hungry?
Are you tired, especially after exercise?
Are your fingernails brittle?
Is your hair limp with little texture?
Do you sleep excessively?
Are you groggy upon waking?
Do you have a lack of mental concentration?
Do you lack a sense of well-being?
Do you have headaches?
Are you constantly fatigued?
Do you have dry skin?
(The Anti Inflammation Zone, p. 34, by Dr. Barry Sears author of the New York Times bestseller The Zone)

Dr. Sears writes that "if you answered yes to more than 3 questions, you probably have elevated levels of silent inflammation." (p.35) Silent inflammation can go undetected for years and manifest itself later in life as chronic illnesses like Alzheimer's disease and early aging. It's important that you listen to what your body is trying to tell you. Silent inflammation can also contribute to depression. Be mindful of signs that your body is under distress, and take the time to care for it.

Sometimes I was too busy to listen to what my symptoms were trying to tell me. If you have screaming pain, you already know you have inflammation. Inflammation is what causes pain, so if you nurse the inflammation, you will help calm the pain. In order to combat the inflammation, Dr. Sears recommends taking fish oil, exercising regularly (but not excessively), and reducing stress. He also suggests extra-virgin olive oil, ginger, and Aloe Vera (p. 91-92).

My doctor also says it's important to pinpoint possible food intolerances. Recent studies also show that if you avoid using too many strong cleaning chemicals, you can reduce inflammation. Using more natural beauty products--rather than products with a lot of chemicals--can help you reduce inflammation. Check back for future posts on more ways to calm internal inflammation.

"By reversing silent inflammation you will: think better, look better, feel better...help prevent heart disease and stroke, help ward off cancer, help reverse type 2 diabetes, help prevent neurological disease (Alzheimer's, depression, attention deficit disorder, Parkinson's), help reduce autoimmune disease (rheumatoid arthritis, lupus, multiple sclerosis), help reduce screaming pain (fibromyalgia, migraines, chronic pain, arthritis, and so on). But most important, you begin to control your own future."

Dr. Barry Sears The Anti Inflammation Zone p.8-9

Healthy food

2008-10-13T15:00:00.001-07:00

The best advice I ever heard about eating healthy is this...

Try to eat mostly plants and as close to their natural state as possible.
(O magazine, October 2008)

If that sounds incredibly lame to you, trust me! As you add more of those gross veggies into your life, little by little you'll convert! Vegetables are more nutritious when they haven't been cooked or processed. And if everyone followed this advice we'd all be a lot healthier and happier. We'd look better and live longer.

On personal note...

2008-10-13T14:58:00.002-07:00

I remember vividly the day my worst pain flareups began. It was the day of my sister's wedding. I was already struggling to heal and manage a really strict, allergen-free diet. I'd dealt patiently with months of vomiting, tons of weight loss, fatigue, brain fog, clumsiness, and a lot of side effects (just to name a few things). But the day of my sister's wedding, the pain was off the charts! At the time, I didn't realize that horrible pain would become a permanent fixture in my life. I wished I could be rushed to the emergency room, where the doctors could fix whatever was causing me pain, and I'd be cured in a few hours of surgery. Some days I wished I had cancer or diabetes, because at least then people would know and understand my sickness. But that's not my story. Instead I got a invisible chronic illness with a name that people haven't heard before. I did have several expensive surgeries, but no cure, just worsened pain. I got a disease that takes many doctors visits and that requires constant maintenance.

With all this lameness, I continue to count myself as incredibly lucky. I am blessed because I have an incredible husband who helps me get through all this crap. He carries me through the difficult days. When I was vomiting a lot, he would hold my hair back and comfort me as I threw up for hours on end. When I wake up in the night in pain, he holds my hand and asks if I'm okay. I married the most amazing person I've ever met in my entire life. I aspire daily to have more of the traits that my husband embodies. And I'm super grateful he puts up with me! I don't deserve him! He is continually sacrificing to help me. He could write his own blog on how to care for a chronically ill spouse!

Credit Crunch

2008-10-13T14:57:00.002-07:00

Here are some quick tips on how to improve your credit (and feel free to comment with any additional tips):

1. Don't apply for a lot of credit cards or loans. The inquiries will hurt your credit score.

2. Make sure you have credit cards or loans in your own name. You need your own line of good credit. You can't depend on using your spouse's. That way, you have a double safety net. If either of your credit gets damaged, at least the other one has good credit.

3. Don't charge a lot to your credit cards. If the limit is $2000, then only charge $200 to the card. If you have a small amount charged to your cards and high credit limits, it will increase your score.

4. Don't be late on payments ever!

Thank you friends and bloggers!

2008-10-06T15:11:00.016-07:00

Thank you for all your supportive posts, comments, and emails! They help to strengthen me, especially when the pain is at its worst! Thank you to all of you who posted my link on your blogs so others can link here. And thanks to all of you who put really nice posts on your own blogs to support my efforts here. I couldn't survive without your help!

Bittersweet Pain

2008-09-24T19:17:00.016-07:00

The other day I started to make a list of all the things that I'm thankful for. The list included pears. How many of us would even think to list pears as one of the great gifts in our life??? Four years ago, before my illness, if I made the same gratitude list, I wouldn't have listed pears. Now living a very restricted diet and a very restricted lifestyle, I am so much more grateful for the simple things in life! That is why the pain is bittersweet. The bitterness we experience increases our capacity to feel the sweetness in life!

On that note, I just got an email from a dear friend. She told me of all the health, family, mental, financial struggles she is currently experiencing. Hearing her real-life dramas of divorce, infidelity, children making poor choices, and health struggles made me wish I could do more to help her. It also made me more grateful for the simple blessings in my own life. And hopefully someone else out there who is reading my blog and feeling down will be able to recognize similar blessings in their own lives. What are some of the simple things you're thankful for?

Be Selfish Sometimes

2008-09-24T19:10:00.017-07:00

It really is true that we do unto others as we do unto ourselves.Those who first love themselves are able to love others more genuinely. As we honor our own wants and needs, we can do the same for others...Those who truly love themselves--as opposed to being self-centered--can trust, accept, and support others from a [better] place...Make a list of the things you would like to do for yourself, but haven't because you thought it would be too selfish. If you do these things, will your life be richer? Will you be happier?...If you answered yes to...these questions, your life and your relationships will benefit from the infusions of a little selfishness.

Sue Patton Thoele, A Woman's Book of Confidence

This was difficult for me to learn. (Let's be honest, I still struggle with caring for myself first.) But it's all about production management. When I take care of myself, I'm better able to care for others and happier while I'm doing it too! It's important to give yourself the rest that you need and deserve. If you have a day that is particularly painful or difficult, treat yourself to something nice. Find ways to lighten the tremendous load of illness by pampering yourself for a bit.

How do I afford healthy organic food? (Financial Solutions)

2008-09-22T15:41:00.006-07:00

If you read the post before this one, I know what you're thinking...eating healthy organic food can be very expensive! But look at it this way--healthy food is a long-term investment. The healthier you eat, the less money you will need to spend later on expensive medications and doctor visits.

1.Don't try to go organic all at once. When you go shopping compare the prices of regular food to organic food. If the difference is only 20 cents, then start there. Gradually add other organic foods into your diet.

2."Shop farmers' markets, or become a member of a CSA (community supported agriculture) farm; in return for a seasonal fee, you'll get a weekly share of the harvest. Visit localharvest.org for CSA options near you." ("6 Ways to Save the World" O magazine)

3. Search the internet for your local grocery store's website. The store will usually post what produce is on sale. Plan your meals around what fruits and veggies are cheap and in season.

How to avoid getting CANCER (healthy goodness)

2008-09-22T15:05:00.026-07:00

"The American Cancer Society reports that one in two men and one in three women will develop cancer. Yet, the No.1 risk factor associated with cancer death is diet." (BetterNutrition.com, July 2008) If you already have cancer and are reading the title of the post, you're probably a little bugged right now. I know that most often when people are diagnosed with cancer or other chronic illnesses, it isn't a result of choices that they've made. I lived a very active, healthy life before I became ill. I also know what it's like to try to control every aspect of your environment (what you eat, how much you exercise, etc.) and still be very ill. There is nothing you did to cause your illness. BUT there are prevention steps everyone can take for some cancers, and if you're already sick, this advice will really help your body handle your illness. Better Nutrition.com recommends, based on research, the following...

1. Eat at least 5 servings of vegetables and 2 servings of fruit daily. (For example; fix yourself a big salad on most days of the week. If you have Crohn's disease, IBS, or a similar illness check with your doctor before adding a lot of raw veggies to your diet.)
2. Eat organic whenever possible to avoid harmful preservatives, pesticides, hormones, and other cancer-causing substances; new research also indicates that organic foods have higher nutritive value.
3. Drink more pure water (avoid sodas).
4.Choose essential fatty acids. Take an omega-3 product.

GIVE YOURSELF Some REST (Sleeplessness relief and pain relief)

2008-09-21T15:18:00.027-07:00

Whether you're sick or healthy, this post can help you get more Zzzzzzzz's. You deserve it! I haven't had a full nights sleep in four years, so I'm very tired. With my illness, it's almost impossible to sleep through the night because the pain is so relentless and strong. But I have come across some great strategies that really help me sleep a lot better! The first three suggestions come from Dr. Woodson Merrell...

1. Dark Therapy: "Scientists studying the light-melatonin connection have discovered that the blue spectrum of light can disrupt circadian rhythms and keep you awake. Exposure to the blue light late at night--it's emitted by computers, televisions, even digital clocks--can wreak havoc with your body clock. Keep your room pitch-dark at night and cover all digital clock or DVD player readouts." ("Your Best Energy Source--Sound Sleep" O magazine, October 2008)

2. Behavioral Therapy: "Avoid nonsleep activities in bed (watching TV, eating, planning, or problem solving). Try to get up at the same time every morning, [and] don't get attached to unrealistic expectations of sleeping soundly every night." ("Your Best Energy Source--Sound Sleep" O magazine, October 2008) I make my bedroom a relaxing peaceful room, and I save clutter for the other rooms.

3. Acupuncture: "Because research suggests that acupuncture helps balance neurotransmitters, there's a logic for its use in promoting relaxation, which results better quality of sleep. In China acupuncture has been used successfully for thousands of years to treat sleep problems." ("Your Best Energy Source--Sound Sleep" O magazine, October 2008)

4. Routine: Creating a soothing bedtime routine is key. For example; take a shower, listen to calming music, or read a book.

5. Supplements: Health food stores sell natural sleep supplements. I have one called Nutrasleep and it contains natural herbs and vitamins that help you relax. If you need sleep medication, consult with your doctor. My doctor recommends Rozerem because it works with your natural wake-sleep cycle and is less habit-forming.

6. Aromatherapy: I buy a product called Anti-Stress Mind Repair from Earth Therapeutics. It has smells of lavender and chamomile. These aromas have been proven to be calming and are also natural way to relieve headaches.

Sweet dreams!

More free advice from a very sick blogger...

2008-09-18T21:17:00.015-07:00

Do you ever feel confused, like your life is flying past you, without a lot of clarity on where it's going? This exerpt from the wonderful book My Grandfather's Blessings by Rachel Naomi Remen, a cancer physician and counselor to chronically ill patients for more than 20 years, offers some insights into life and its randomness...

In 1998 Commonweal, the center at which I work, installed a labyrinth exactly like the one that has been in the cathedral at Chartres since 1300...Walking the labyrinth is deceptive. At the beginning one seems to be heading directly for the center when one is actually farthest away from it...Walking the labyrinth causes you to confront the world of illusion, the difference between our hard-edged perception of how the world works and how the world works. It can be a humbling experience...Could events [in my life] that seemed meaningless, or even wasteful, be taking me to a destination as surely as the twisting and turning path I had just followed? Perhaps my path only seemed random because I was still on it. At the end, from the center, would I someday see life as complete and whole and recognize a hidden direction and pattern that redeemed loss and failure and pain and utterly changed their meaning and value? Often it is only as a life becomes complete that the pattern which it upholds it, its underlying meaning, can become visible. (p.50)

It cost way too muh to be ill (Financial Solutions)

2008-09-18T21:17:00.010-07:00

I just read in Newsweek this week that 1 in 5 is the "fraction of cancer patients with health insurance who still spend most or all of their savings paying for their medical care." ("We Fought Cancer...and Cancer Won")

Thankfully, Money magazine published an article entitled "50 Ways to Cut Your Health-Care Costs". If you are struggling to make ends meet because of medical costs, this article is very helpful!

Healthy Goodness...

2008-09-15T20:51:00.017-07:00

At the time of my diagnosis, one the worst symptoms I experienced was nausea. I was vomiting all the time. It doesn't matter what your chronic illness is, it will be aggravated by your stomach digesting improperly. Sometimes, chronic illnesses can even be caused by an upset digestive system. Initially, my doctor tested me and treated me for a parasitic infection. (I had been living outside of the country for over a year.) Then, he had me do these important things...(Remember, it's important that you check with your doctor before you start any new treatments)

Probiotics - To place healthy bacteria in your digestive system, use probiotics--especially if you've been on a lot of antibiotics that can kill good bacteria. Better Nutrition says that probiotics are one of the "3 Household Essentials" (July 2008). "Probiotics improve resistance to respiratory infections, lower the risk of...allergies, and support healthy digestion. Probiotics are found in yogurt with live cultures and in supplements."

Elimination Diet - If your stomach is upset, it could be from food allergies. It's important to meet with a doctor who guides you through all the steps of an elimination diet, so you can find out what your food-triggers are. I started out eating only veggies, rice and chicken and slowly added wheat, milk, soy, corn, eggs, sugar, nuts, etc. back into my diet. I paid attention to how I felt as I added these foods back into my diet. If I felt nauseous, groggy, or stuffed up, I knew I needed to eliminate that food from my diet.

Digestive Enzymes - These enzymes can help you digest your food better.

Fish Oil - This helps to heal any inflammation in your digestive track. Better Nutrition also recommends this as one of the "3 Household Essentials". It can help you have healthier hair, skin, and a healthier heart. It "helps to stabilize mood, reduce depression..., relieve PMS symptoms, alleviate attention deficit disorder..., and support healthy weight loss."

Nystatin - This help to kill any yeast overgrowth in the 'gut' that might be affecting your digestion.

Bittersweet Pain

2008-09-10T18:25:00.022-07:00

If you experience physical pain, please don't ignore it! I tried working two demanding jobs and ignored the pain I was in, but it kept getting worse. Now I know that as soon as my pain increases, I need to stop life's craziness, rest, and address the pain. Otherwise, I know it will get out of control and become more difficult to treat.

Newsweek featured an article entitled "The Changing Science of Pain" by Mary Carmichael (June 4, 2007). In the article, Mary discusses the complexities of chronic pain. Pain can be a beneficial signal in our body that tells us something is wrong. With chronic pain patients the neurons are constantly firing, screaming to the brain that something is wrong. "Chronic pain is one of the most pervasive and intractable medical conditions in the United States...Regardless of [the patient's] injuries, their genes, their gender or their background, nearly all chronic-pain patients agree on one thing: the hyperactive neurons can make life near unbearable. The cascade of changes in the nervous system can lead to an equally painful cascade of events in a patient's life; memory loss, job loss, marital strife, depression, suicide. And through it all the body hurts like hell."

How do you stop the pain?!

I've been through a lot of surgeries, medications, and experimental treatments. I have finally found a combination of therapies that help to somewhat numb the pain. Everyone responds differently to treatments, so be sure to consult your doctor before trying anything new.

I go to a multidisciplinary clinic. At the clinic, there are physical therapists, doctors, chiropractors, acupuncturists, dietitians, and psychologists all working together to treat pain. Chronic illness needs multipart therapy. Acupuncture helps with the nerve pain. Physical therapy treats muscle pain. Diet, medications and supplements help with inflammation, and my primary care doctor/ pain specialist oversees how it all works together.

As far as pain treatment goes, I love acupuncture. I would never voluntarily go and get 12 needles stuck in me several times a month unless it worked, and it definitely helps. Acupuncture interrupts the pain signals from continually firing, and gives me some needed relief.

Free Advice...

2008-09-10T11:33:00.014-07:00

I often have to remind myself of the lessons I've learned from experiencing chronic physical pain. Initially, my diagnosis made me very angry--I couldn't accept the reality of a chronic physical illness at my young age. I fought the reality of an illness ruling my life. When the pain is extreme, it's difficult to accept. But I've learned that it's transformative to be at peace with the pain. Instead of bracing myself against an inevitable struggle, I can open myself up to the inevitable and accept the pain.

In his book, When You're Falling, Dive, Mark Matousek teaches, "When we attatch ourselves to a single outcome, it's easy to become hope's hostage... we risk spending our time consumed by longing...unhappy with what life has chosen to give us. Buddhism warns against too much clinging to desired outcomes we cannot control." (p.76) In order to conquer uncertainty and pain we have to really accept it as a reality of our lives. This isn't simple--it takes a certain kind of wisdom to accept all the crap life throws at you, but once you do, the pain isn't as consuming.

It costs way too much to be chronically sick... (Financial Solutions)

2008-09-10T09:24:00.018-07:00

Tip #2

Try using cash this month for all of your expenses. Budget how much you want to spend for the month, and take out that exact amount in cash. Separate the cash into categories. For example, set aside $300 for groceries, $100 for gas, $20 for entertainment, etc. Once you use the allotted amount of cash, don't spend any more money. Compare what you spend in cash, using this system, to what you normally spend using a credit or debit card. Using cash can decrease your monthly spending. Less spending means more money for medicine, doctor visits, and hospital bills.

Tip #3
If your health insurance doesn't cover some of your prescriptions, or you've already reached your maximum prescription benefit for the year, there is help. There are websites that offer applications for prescription assistance.
https://www.pparx.org/Intro.php
http://www.needymeds.com/
If these websites don't offer help for a specific medication you are taking, then contact the company that makes the medication. Sometimes the company offers coupons or other ways to help you afford your medication. If it's a new medication that you are trying, ask the pharmacist to only fill a week of it. Don't pay for the entire medication until you know that it doesn't cause any adverse side effects and that it works for you.

Chronic Illness Awareness Week!

2008-09-02T18:23:00.003-07:00

This week is Chronic Illness Awareness Week!
Go to:
http://www.restministries.org/invisibleillness/conference.htm#schedule
for information about the upcoming conference schedule that you can access online!

HEALTHY GOODNESS :)

2008-09-02T14:24:00.030-07:00

In his book The Inflammation Cure, Dr. Megs explains how almost all chronic sicknesses are related to some sort of inflammation in the body. He says that -itis is a suffix that means inflammation. Any disease ending in -itis is inflammation related. Arthritis, aging, and allergies come from inflammation in the body. Even dementia can be accelerated from inflammation!

Dr. Meggs supports eating fish and/or take fish oil! There isn't a cure for most chronic physical illnesses, but research shows taking fish oil can drastically improve how your body is able to handle disease. Fish oil or other types of Omega-3s can help you life a longer and healthier life!

Always consult your doctor before trying any new supplements. Ask your doctor for guidelines on how much fish oil to take, and what brands are best to use. My doctor recommended EPA-DHA Complex (Ultra Pure Omega-3 Essential Fatty Acids) made by Metagenics. Taking Omega-3 essential fatty acids has reduced the inflammation in my body and helped to lessen my chronic pain!

Foods that reduce inflammation include:
Turmeric
Ginger
Broccoli
Sweet Potato
Blueberries

I recommend reading The Inflammation Cure, by William Joel Meggs M.D., Ph.d. In his book, Dr. Meggs gives great examples of the benefits of eating an anti-inflammation diet. He recommends that you always eat lots of fruits and vegetables and add olive oil to your diet. Following this advice has been very beneficial in improving my health, pain, and need for medications!

BITTERSWEET PAIN (Inspiration for the ill)

2008-08-08T13:04:00.015-07:00

Because I do not look chronically ill, I sometimes get skeptical looks when I tell someone I have a chronic physical illness. Occasionally I've been told that it's "all in my head." For the rest of my life I will always endure some level of physical pain. It's unfortunate that my life, already full of unimaginable difficulty, has to be further complicated by the naive judgment of others. In a lot of ways, I know they are only products of their culture...

Joy H. Selak and Dr. Steven S. Overman's book You Don't Look Sick: Living Well with Invisible Chronic Illness investigates America's view on long-term illness. The authors specifically discuss Patricia Fennell's perspective on culture of misunderstanding. "First, Fennell notes, Americans are intolerant of suffering, assigning it no value, and expecting that it be done in silence. Suffering is often believed to have a psychological cause, and is therefore assumed to be a person's own fault. Second, western culture is intolerant of ambiguity, an element common to chronic illnesses, where often neither the cause nor the cure is known. Third, chronic illness is unpredictable and resistant to the high-tech quick fix our achievement-oriented society has come to expect."

Suffering can have a lot of value. Beautiful wisdom can be gained from hardship.

It's important to find physicians who will give patient and continuous care, because there is no quick-fix for chronic illnesses. Thankfully I've found doctors who work relentlessly to help ease the physical pain I'm constantly experiencing, and who continually research the newest and most effective treatments for my illness.

FREE ADVICE from a sick blogger

2008-08-08T12:53:00.024-07:00

In her book, You Don't Look Sick: Living with Invisible Chronic Illness, Joy H. Selak teaches "The quiet activities illness demands can train patients to listen, a skill they will need to further perfect. Chronically ill patients who aspire to live better will need to listen to what their body is telling them and understand they cannot fix everything just by trying harder. They will need to spend time listening to the emotions, fears, and anxieties tied to the past and sort out what they can now release. They will need to listen less to the negative people in their lives, and with greater attention to the people willing to support and share with them. They will need to listen more closely to their own inner and spiritual selves as they learn new ways to navigate life with illness."

Grieve for your old life, it's so healthy to let yourself feel emotions of pain and sadness. If you allow yourself time to mourn, you will see how quickly you are ready to move on with your new life!

One of the huge benefits my illness is that it has enabled me to find out who my true friends are. I realize now that if I have a friend who is judgmental of my new life with a chronic illlness or impatient with my illness, he/she is not good for me. Having a chronic illness is a constant strain, so I chose to be around supportive friends who help and strengthen me.

It costs way too much to be chronically sick...

2008-08-08T12:39:00.016-07:00

Where are I am going to get the money to pay for all my medical expenses?
How can I get and keep good health coverage?
What should I do now to prepare for continuing health problems?

I went from working two jobs to being on modified bed rest. The medical bills came flying in, and the stress of a chronic illness, in addition to financial difficulty, was overwhelming. I quickly became informed on ways to save money!
Every week, I'll post new advice for the financial struggles of having a complicated illness.

Tip #1
Always avoid a break in health coverage. If you have a break in health coverage, it gives health insurance companies license to refuse to cover any preexisting conditions. Also, become informed about where politicians stand on health issues.

http://www.barackobama.com/issues/healthcare/

http://www.johnmccain.com/healthcare/

It is becoming increasingly difficult for chronically ill patients to get good health coverage. I have $30,000 in debt solely due to health care costs, because my illness was considered a preexisting condition, and health insurance companies refused to cover it.

If you're too sick to work full-time, there are companies that offer part-time benefits.
Discover Card
REI
Target
IKEA
Circuit City
Trader Joes
Starbucks
Barnes and Noble
Lowes
Nordstrom
JCPenny
UPS