Thursday, December 24, 2009
All I wanted for Christmas was a baby...
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!
Saturday, December 19, 2009
Health Care: What the?
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.
Sunday, October 18, 2009
Boring
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.
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.
P.S. I'm always looking for new ideas so please share if you have any!
Friday, October 2, 2009
Take another picture with your click click click click camera...
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)
Sunday, August 16, 2009
Work, adoption, foster parenting...
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.
Monday, July 20, 2009
Missing In Action
Thursday, July 2, 2009
Am I of Worth?
http://alturl.com/rqpg
Friday, May 15, 2009
Help! I'm stressed!
Saturday, May 2, 2009
4 Years!
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).
Thursday, April 9, 2009
Finding Balance
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.
Thursday, April 2, 2009
Sick Around America
Sunday, March 1, 2009
Monday, February 9, 2009
Regaining hope
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)
Sunday, January 25, 2009
Forget the guilt!
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!
Friday, January 23, 2009
Time to celebrate!
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!
Thursday, January 22, 2009
Chronic pain awareness
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
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
Tuesday, January 13, 2009
The Yes Patient
--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....
THE EN-LIGHT-ND WOMAN blog
Low Energy? RELAX!
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.
Thursday, January 8, 2009
Monday, January 5, 2009
Love Yourself
"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
Sunday, January 4, 2009
There are going to be a lot of layoffs this year. Here's how to protect your job.
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.