Spina Bifida Awareness: What is Spina Bifida?

* I apologize for not doing this in a very timely manner. We have been sick and the baby has been, well, a baby.

“Spina bifida [meaning ‘split spine’] is part of a group of birth defects called neural tube defects. The neural tube is the embryonic structure that eventually develops into the baby’s brain and spinal cord and the tissues that enclose them. Normally, the neural tube forms early in the pregnancy and closes by the 28th day after conception. In babies with spina bifida, a portion of the neural tube fails to develop or close properly, causing defects in the spinal cord and in the bones of the backbone. Spina bifida occurs in various forms of severity. When treatment for spina bifida is necessary, it’s done through surgery, although such treatment doesn’t always completely resolve the problem.” [MayoClinic.com]

Drawing of a baby born with Spina Bifida. [CDC.gov]

Drawing of a baby born with Spina Bifida.
[CDC.gov]

Spina Bifida is the most common permanently disabling birth defect in the United States.

Each year, about 1,500 babies are born with spina bifida

Can Spina Bifida be detected before birth?
Yes. There are three tests*.

  1. A blood test during the 16th to 18th weeks of pregnancy. This is called the alpha-fetoprotein (AFP screening test). This test is higher in about 75–80 % of women who have a fetus with Spina Bifida.
  2. An ultrasound of the fetus. This is also called a sonogram and can show signs of Spina Bifida such as the open spine.
  1. A test where a small amount of the fluid from the womb is taken through a thin needle. This is called maternal amniocentesis and can be used to look at protein

There are three different types of Spina Bifida – Spina Bifida Occulta, Meningocele, and Myelomeningocele (Meningomyelocele), also called Spina Bifida Cystica.

Spina Bifida Occulta
It is often called “hidden Spina Bifida” because about 15 percent of healthy people have it and do not know it. Spina Bifida Occulta usually does not cause harm, and has no visible signs. The spinal cord and nerves are usually fine. People find out they have it after having an X-ray of their back. It is considered an incidental finding because the X-Ray is normally done for other reasons. However, in a small group of people with SBO, pain and neurological symptoms may occur. Tethered cord can be an insidious complication that requires investigation by a neurosurgeon.

Meningocele
A meningocele causes part of the spinal cord to come through the spine like a sac that is pushed out. Nerve fluid is in the sac, and there is usually no nerve damage. Individuals with this condition may have minor disabilities.

Myelomeningocele (Meningomyelocele), also called Spina Bifida Cystica
his is the most severe form of Spina Bifida. It happens when parts of the spinal cord and nerves come through the open part of the spine. It causes nerve damage and other disabilities. Seventy to ninety percent of children with this condition also have too much fluid on their brains. This happens because fluid that protects the brain and spinal cord is unable to drain like it should. The fluid builds up, causing pressure and swelling. Without treatment, a person’s head grows too big, and may have brain damage. Children who do not have Spina Bifida can also have this problem, so parents need to check with a doctor.

[SpinaBifidaAssociation.org]

Basically, all of that means that in different forms and different severities, the spinal cord does not fuse together and is usually open and exposed when the baby is born. A surgery is done to close the opening immediately after birth.

People with Spina Bifida also have hydrocephalus (water on the brain) due to the inability for spinal fluid to drain properly. Almost always, a shunt is surgically placed to help fluid drain properly.

As the child gets older, these problems translate into physical disability, as well as dyslexia and other kinds of intellectual difficulties.

The severity of the disability of a person with Spina Bifida tends to depend of the location of the defect. The higher the defect is on the spine, the more severe the disability, and the more functions it affects.

[disabled-world.com]

[disabled-world.com]

Physical disability ranges from being fairly unaffected, able to walk and get around without assistance, to needing braces, a walker, and/or a wheelchair. The nerves that are affected can also cause loss of sensation, poor circulation, and many times, incontinence. They can sometimes get blisters and sores on the skin, and almost always have a latex allergy.

Katie is, I think, somewhere in the middle of that spectrum. Though she uses a wheelchair now, like me, she didn’t always. She used to get around well with the assistance of a walker, and she has always worn braces. She started using a wheelchair around when she started high school, when walking more than a few meters became very painful to her knees, hips, and back.

I asked Kate to share some of her own knowledge and experiences of Spina Bifida. It was much more personal and helpful than anything I was able to find on a website.

This is what she shared 🙂 :

  • My SB is as between the L4 and L5 region of my spine (basically right above the base of the spine)
  • I have Myelomeningocele
  • Started using a chair regularly in 9th grade. Before that it was only for anywhere that would have meant a lot of walking (vacations, museums, zoo, mall, etc).
  • Everyone with SB has hydrocephalus
  • Most people with SB need a shunt implanted to drain the excess spinal fluid from the brain (hydrocephalus) (I thankfully did not)
  • Many will have multiple shunt revisions for malfunction shunts
  • Most use braces, crutches, or a chair
  • No one knows the cause of SB for sure but it is thought to be a combo of environmental and genetic. Lots of research is and has been done on the genetic side. Tends to happen more often in areas with a lot of farm land.
  • Nobody knew I had SB until I was born. My mom had no idea I didn’t move as much as I was supposed to. Because it was her first pregnancy and she had nothing to compare it to. Now they test for it.
  • Had my first surgery to close my back soon after birth
  • My parents were told I probably wouldn’t ever walk. I’ve apparently always like to prove people wrong. Tell me I can’t do something and I will do everything in my power to prove you wrong.
  • Depression and anxiety are very common in Spina Bifida
  • Bowel and bladder incontinence
  • Unemployment rate is in the 70% range
  • Starting at about 12 or 13 I started having pain especially in my knees and back. It continued to progress from there until I had constant back pain as well as frequent knee and hip pain.
  • Using my chair has also caused frequent wrist elbow and shoulder pain
  • My muscles especially the ones in my legs started twitching around the same time and I didn’t find out until I was 28 that that it was caused by tethered cord which should have been discovered when I was in my early teens but wasn’t. At this point the risks of the surgery to untether me out way the benefits so I just have to live with it.
  • I had lots of physical therapy when I was little. Of course at that age PT is playing games and having fun. Took ballet and tap dance too.

Individuals with spina bifida often have trouble processing information (for example, understanding and remembering instructions). Information processing is a key skill in academic areas such as mathematics, science, reading comprehension, and writing. The difficulty is not limited to schoolwork, however, but also applies to processing day to day information from parents, siblings, and school classmates. Individuals living with spina bifida and their parents have reported problems in several areas, such as completing assignments in a timely manner, finding and getting to the classroom in the time allotted, remembering to take medication, and performing required treatments (e.g., catheterizations) at the prescribed time. In addition, some experience difficulty in making meaningful contact/friendships with peers, which may result in social isolation. Parents of children with spina bifida also report difficulty promoting independence and self care. They may find it necessary to repeat seemingly straight forward directions over and over.They are accused of being lazy, rude or uncooperative. [mydoctor.kaiserpermanente.org]

  • Many people have learning disabilities. Specifically Nonverbal Learning Disorder. It is a big part of having Spina Bifida.
  • School was incredibly difficult for me. I started falling behind in math in about 3rd grade. Math still makes no sense to me even simple addition and subtraction takes me longer to do then most people.
  • Big projects were hard because they require you to break them down into smaller parts and I never figured out how to do that. I always ended up scrambling at the last second to finish.
  • Taking a test is nearly impossible. I may know the material, but trying to translate that into answering questions or writing an essay doesn’t work
  • I have a very hard time summarizing things I’ve read but I love to read.
  • I’ve been called lazy when many times I just forgot that I was asked to do something. Or couldn’t remember/didn’t know how to do something.
  • I’ve had many situations where I was asked to do a list of things and only manage to remember one maybe two of the things I was supposed to do, and have to ask what else I was supposed to do. Or I spend so much time doing the first thing that there’s no time left for the rest.

Talking to Kate and reading her answers, I found out so many things I had not known before, even through spending every day with her for years.

I started to recognize some things about myself, that I had previously dismissed, or just believed when people (mainly teachers and fellow students) said I was lazy or just not trying hard enough.  Be careful, especially teachers, how you handle a child that doesn’t ‘fit in the mold’. Teachers can be a child’s greatest empowerers or their most destructive bulldozers.

I started to get angry and frustrated, specifically about our school system, and how if you can’t cut it the way they lay it out, with reading and writing and math tests, you’re almost doomed for failure. Even though there is a wealth of other knowledge and talent that these children and people have to offer. Or just more effective ways of displaying what they have learned.

That is where we have failed as a society.

Do I know how to fix it? No, I don’t. But it needs to be fixed. One person can’t change it. 100 people can’t change it. It needs to start as a change in our hearts and mindsets.

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Spina Bifida Awareness: My Best Friend Kate

In 10th grade, just after turning 15; and after finally settling in, getting used to, and even starting to like California, my dad’s job moved us to Minnesota. Again, I would leave what friends I had finally made, and be the new, awkward handicap kid that didn’t know anyone.

I survived the second term, just getting my work done and spending my extra time in my room with my CD player. Third term started, and it included World History with Mr. Laliberte. He was a goofy, hockey loving, first year teacher, who was not much older than we were.

That’s where I met Katie. She sat in a desk at the front of the class, and used a wheelchair, but I didn’t know why. Tired of not having any local friend, and honestly, tired of being shunned by snobs because I walked differently, I decided to just do it. Just talk to her. I figured we at least had one thing in common, and if she didn’t seem friendly, she would just be one more person on the long list.

So one day walking back to Mr. Laliberte’s class from the cafeteria, I did it. I introduced myself, and I asked if she had cerebral palsy. I knew she didn’t, because she moved differently than I did, but I didn’t want to just say “What do you have” or “What’s wrong with you”. She said she had Spina Bifida. I think that was the extent of our conversation that day, and I don’t really remember what happened between then and the day that we went to see Monsters Inc. with a group of new friends from Laliberte’s class, and her (now our) friend Katrina, but by that summer we were pretty much inseparable.

I am lucky enough to have two best friends. Kelly and I have known each other since I was 9, and we have kept in touch and are still best friends despite everything life has thrown at us. But there are aspects of my life that nobody can quite understand as well as Katie does. And there is so much power and comfort in having someone that understands. Not just someone that believes you or even believes in you, but someone who understands. Because they’ve been there. Because they are there.

So, in honor of Katie (aka Kate), I will be doing a Spina Bifida Awareness series for October; Spina Bifida Awareness month. Due to family issues, a packed schedule, and me not realizing it was October until a month in, I am getting a much later start than I wanted to. But I am starting off with Kate’s answers to the Invisible Illness survey.

Read on and stay tuned!

 

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Spina Bifida

2. I was diagnosed with it in the year: 1984. As soon as I was born.

3. But I had symptoms since: In the womb but nobody realized it.

4. The biggest adjustment I’ve had to make is: Accepting my limitations

5. Most people assume: That I’m exaggerating

6. The hardest part about mornings is: Walking

7. My favourite medical TV show is: House!

8. A gadget I couldn’t live without is: My phone

9. The hardest part about nights are: Everything hurts

10. Each day I take at least 0 pills & vitamins: I refuse to rely on meds at this point though I could definitely use them. I know I’ll hit a point where I won’t have a choice but I want to postpone the inevitable for as long as possible.

11. Regarding alternative treatments I: Haven’t really tried anything.

12. If I had to choose between an invisible illness or visible I would choose: Visible

13. Regarding working and career: I miss working but it’s difficult when I can’t work more than 5hrs a day and only if I only work a few days a week.

14. People would be surprised to know: Sometimes I actually like being disabled.

15. The hardest thing to accept about reality has been: That it’s not going to change

16. Something I never thought I could do with my illness that I did was: Travel by myself

17. The commercials about my illness: There aren’t any really.

18. Something I really miss doing since my disability has progressed is: Running around. I used to love playing baseball and tag and just running around outside.

19. It is really hard to go without: My wheelchair

21. If I could have one day of feeling normal again I would: Go for a run or a bike ride. Go shopping. Maybe go to the zoo. Any place I don’t go by myself now because I’m afraid I won’t be able to get around.

22. My illness has taught me: You can never truly know, or judge, what another person is going through. Stole this but I couldn’t have said it better myself.

23. Want to know a secret? One thing people say that gets under my skin is: I can’t believe you can (fill in the blank). Drives me crazy when people assume I can’t do something.

24. But I love it when people: Take the time to get to know me.

25. My favourite motto, scripture, quote that gets me through tough times is:

26. When someone is diagnosed I’d like to tell them: Don’t listen to other people. Only you know what you can and can’t do and what you do and don’t want.

27. Something that has surprised me about living with an illness is: How much harder everything is to do.

28. The nicest thing someone did for me when I wasn’t feeling well was: Lots of things.

29. I’m going to get involved with Invisible Illness Week next year because: It’s important for people to pay attention to what other people are going through even if they can’t see it.

30. The fact that you read this list makes me feel: Like you care

DSCF1132

Adversity Breeds Awesomeness

*Let it be known that in what you are about to read, my intent is not to gossip. It is only to spread awareness of a horrible prejudice, and share one of the most – if not the most – important lessons I’ve ever learned.

“Yesterday I deactivated my Facebook account. Then I thought about all my long distance family and friends, that I only get to see and talk to through Facebook. Which is why I opened a Facebook account in the first place. It’s also been a place to promote causes that are important to me. So I’m reactivating it.

I realize that not everyone is going to agree with everything I say or do. You might be bothered by the fact that my husband was born in Mexico, the fact that I don’t work because of my disability, or the fact that sometimes my husband and I make the wrong decisions; financially or otherwise. And that’s ok. We do our best to live our lives the way we believe God calls us to, even when others disagree. And sometimes we make mistakes.

However, if we do disagree on anything, I expect we can do it in an adult-like fashion, without name calling, public humiliation, or airing dirty laundry…”

The post went on to say that if you can’t disagree without public humiliation, I will simply block you. Many don’t need to hear that, but surprisingly, a lot do.

Near the end of last week, I shared a photo on Facebook. A photo of a lady holding a sign that described her situation. She is a 34 year old woman, with a job that does not offer insurance benefits. After a trip to the ER, tumors were found in her uterus. Of course, trying to get insurance after that, she was denied based on her pre-existing condition.

The photo brought up the very controversial topic of Obamacare.

Along with the photo, I commented basically that I was neither for nor against Obamacare; Republican nor Democrat. Well, actually I said that I was a little of both. What I did specify was that we need healthcare reform. Because I don’t believe that any hardworking person should have to go without health insurance. I believe that companies like McDonald’s, or Olive Garden, who make millions every year, because of their employees, should offer health insurance to those employees. And I believe that those who cannot get health insurance through a company should be able to purchase an affordable individual plan.

Nothing to do with ‘welfare’; or even Obamacare, really. Everything to do with providers in the medical field exploiting our basic human need for health care. Employers caring more about profit than people. And I don’t see any health insurance companies or medical providers going bankrupt. Not in the real sense of the term.

The sign the lady was holding did start out saying “I am Obamacare”. But like I mentioned, I stated that I was not advocating Obamacare, but some kind of healthcare reform.

My point was not even that ‘people like me’ (Read: people who don’t work and get government assistance) should get health care. It was that people who work hard for their companies every day, should.

But somehow, based on the photo I shared and the words that I said, a family member verbally attacked me. On Facebook, for everyone to see.

The short of it was that she also has pain, but she still goes to work every day, and that I am robbing her by not doing so myself. She went on to refer to me as ungrateful, entitled, uneducated, unintelligent, and irrational, while she listed some of the financial mistakes my husband and I have made in the past.

I retaliated, not by defending my mistakes, or even by telling the other side of that story, but by referring to her as ‘lady’, and listing off all of the reasons why I am, in fact, ‘entitled’ to receive a disability check every month.

And my cousin said some political/social justice things, and my sister said some things that, honestly, made me really proud to be her sister.

My intent was not (and never is) that she, or anyone, would pity me, only that they would not assume that I simply don’t try hard enough.

But then I apologized, because I heard a still, small voice. It said “As much as depends on you, live peaceably.”

I’ve probably only really recognized that scripture twice in my life. Yet there it was, clear as day. I would have to Google it to even tell you what verse it is.

I had not answered by name calling, listing her mistakes, or even mentioning the other side of the story in those financial mistakes. But I had not answered peaceably. So I apologized. She never responded, so I may never know if she read my apology.

The reason I deactivated my account was not because of her. It was because of various family members over time taking similar actions, resorting to Facebook bullying and airing dirty laundry when they disagree with something I say or do. All of them but one over the age of 45.

I’ve been accused of faking and/or over exaggerating my disability (I’ve had multiple surgeries and therapy, starting at the age of 2, so I don’t know how you fake that). They say that I receive ‘special treatment’ from my parents and grandparents because I ‘limp a little’.

This really hurts, specifically coming from family members, and specifically within the past few years, because I have always been independent to a fault.

Regarding working, and then collecting disability, I can honestly say that I worked as hard as I could for as long as I could. I ignored the pain for a long, long time. Then I took OTC meds, then prescriptions, then got a wheelchair, braces, and accommodations. I did everything in my power to keep working. But there came a time when I couldn’t do it anymore, and I felt a peace about leaving, and collecting from a system that I had paid into as long as I could. (Note: I have no qualms about someone not working and getting government assistance if they are unable, whether or not they have paid into it. If you need it, you need it.)

With the help of a very good friend (another shout out to Mrs. C!), and the support of a few others, I realized that trying to communicate this to any of them, or anyone else, doesn’t matter. Because I do not have to defend myself. I have One much greater than any of us to defend me. My only job is to seek first the kingdom of God.

I’ve realized something else in these past few days, with all of this drama. I think a lot of you will find it interesting, maybe eye-opening to your own circumstances. Maybe you will think less of me, because I’m going to be very honest and transparent about some of my own faults. But I hope not. I hope you will just see me as a fellow human being, who has flaws and hurdles to overcome, just like the rest of us.

When I was a kid, I had all these plans about what my life was going to be after I turned 18. I didn’t like that my parents were poor, and had to worry all the time, so I was going to do all the right things to have ‘enough’ money. I didn’t like that their house was always messy, so mine was going to be clean. I thought it was sad how they fought with family members and stopped talking to them, so I wasn’t going to do that. I didn’t understand why a lot of disabled people didn’t have the life that they wanted, so I was going to have it. I was going to be nice, work hard, and make smart decisions.

But life happened, and I’m broke, my house is a mess, and I don’t talk to a growing number of family members (because I give up after multiple attacks on my character), and I can’t even grocery shop without assistance.

Ever since I started seriously losing my mobility and having a lot of pain, a few years ago, and realizing my life is not what I had ‘planned’ it would be, I’ve been asking God why. Full on, crying in the shower, punching my pillow, begging God to either rewind time or show me a reason.

For a long time I blamed it on some influences and problems from my teenage years. If I could have just stayed where I was instead of having to move to such and such place. If I could have done this at that time I wouldn’t have gone down such and such path. Why I listened to the negative voices. Why I hadn’t had more courage. Why I had to have CP. Not because it bothered me to be disabled, but because now the pain got in the way so much. And because of the prejudice and accusations.

Mostly I wanted to know why it felt like I had lost the past 10 years. Why as much as I tried to make the right decisions, they usually turned out to be the wrong ones. But knowing I could have done better, learned more.

I never really thought I would get an answer. I figured it was one of those things I’d have to wait to find out until I ask God when I get there. But going through this in the past few days, I heard my answer: Compassion.

If I had gotten out of my parents’ house and made all the right decisions, made more than enough money, never fought with my family; even not had the pain that I have now, I would be just like this family member who seemed to think that if you do not make enough make enough money to support yourself and your own family, regardless of the reason, you deserved only what your own finances could produce. Even if it meant not enough food or healthcare. Even if that was nothing.

I don’t think I would be as mean as her, but I would think like her. I would look down on my parents, and anyone who didn’t make ‘enough’ money. I would look down on people that didn’t have the career and the life that they wanted. I would even look down on disabled people that didn’t work. And even the ones that could walk, but used a wheelchair. Because if I can, they can too. To me it would be simply a matter of will power. I would assume that, regardless of what their circumstances are or have been, they should have done better. Because I would have no idea.

So I am really glad for all of my adversity. I do plan on turning our financial future around. But I will use my mind and my heart instead of my body. And I won’t look down on anyone who is in a different place. Or tax bracket.

It’s kind of embarrassing to admit all of that, so hopefully it doesn’t cause you to have a negative opinion of me.

But through all of this I learned: Adversity Breeds Awesomeness

And Compassion.

And I figured that was a lesson worth sharing.

**My cousin coined this phrase. We use it often, and we claim rights. 😉 We’ll probably make T-shirts.

***Oh, and please no mean-spirited comments. The post I applied to my Facebook page also applies to this blog.

30 Things About My Invisible Illness You May Not Know

During September, Invisible Illness week came and went. I had other things on my mind in September, so I’m talking about it now. While cerebral palsy is a disability and not really an illness, I still feel that it fits the bill in my case.

If you’re wondering how it’s invisible, the reasons are these:

  • I don’t ‘look’ disabled. I really don’t like this one, because I feel like nobody should be labeled that they ‘look disabled’ or ‘don’t look disabled’. But out in the world, people like labels.
  • When I’m walking around in public, or even in my wheelchair, nobody knows that I’m in a lot of pain. I look happy (because I am happy, based on things that have nothing to do with my physical circumstances). I think that, at least for me, walking (or rolling; mostly rolling) around with a sad face, or being angry all the time, would be detrimental to my life and to the people around me. Especially my kids.
  • Still a lot of my friends and family, even doctors, have a hard time understanding it. I’ve been a lot more open about the pain lately, and losing my mobility, but sometimes I still get the feeling that a lot of people don’t understand it’s more than just a limp.

Anyway, I found this survey on another blog, and reading her answers was interesting, so I thought I would post it too 🙂 Surveys are a fun way to learn things about other people, and even yourself, while your searching your insides for the answer to a question you had never thought to ask yourself. Here goes!

1. The illness I live with is: Cerebral Palsy

2. I was diagnosed with it in the year: 1987 I think? Maybe ’86. I was a year and a half or two.

3. But I had symptoms since: I was born I guess, just nobody really recognized them for a while. CP symptoms are similar to regular newborn/baby characteristics.

4. The biggest adjustment I’ve had to make is: Not being able to do whatever I want, whenever I want. Having an A-type personality and losing your mobility is hard!

5. Most people assume: Oh… where do I start with this question… Most people assume that I’m fine. That limping is my biggest problem.

6. The hardest part about mornings are: Everything. The pain is worst in the morning. It wakes me up before the sun. Which is good anyway, because I need a good couple hours to get it under control before the kids wake up.

7. My favorite medical TV show is: TV is boring. Turn up the radio. Or X Factor. X Factor is good.

8. A gadget I couldn’t live without is: My iPhone. Same answer as the last girl. But it’s oh. So. True.

9. The hardest part about nights are: Falling asleep when my legs are aching. Also, same answer as the last girl, who has Spina Bifida. I would add that staying asleep while things are aching is also a big challenge.

10. Each day I take at least 7 pills & vitamins. Lately it’s in the 20’s (Don’t judge me, a lot of ibuprofen for swelling and inflammation. And it’s OTC because I don’t wanna pay $100 plus to get and buy a prescription)

11. Regarding alternative treatments I: Have tried them all.. To help with pain and overall health and wellbeing. Again, same answer as the last girl. I would add that nothing seems to really help.

12. If I had to choose between an invisible illness or visible I would choose: 10 years ago I wouldn’t have changed it. Now I would. Well, maybe not, because I would have to choose a visible one, which has it’s advantages, but I don’t know if its a good trade off.

13. Regarding working and career: I miss working, and making more money than I recieve on Social Security, but I’m not going to let it bother me because I can’t change it. And some of the things I get to do now are pretty awesome.

14. People would be surprised to know: I feel like I fell/am falling through the cracks, medically speaking. I didn’t have any medical care from the time I was 13 until I got my first job with insurance at 23. And now, they don’t know what to do with me. I keep hearing about other people that are having surgeries that are working wonders for them, and I think a few of them could really help me, but I don’t have insurance right now 😦

15. The hardest thing to accept about reality has been: Losing my mobility, resulting in not being able to raise my kids or live my life the way I really want to. I don’t know that I’ve really even accepted it. I have for right now, but I still have hopes that it can be better.

16. Something I never thought I could do with my illness that I did was: Wear flip-flops. Stupid I know, but if you only knew…
Thank you, Old Navy, for making cheap flip flops that stick to my feet so I can wear them.

17. The commercials about my illness: Are always about suing doctors for medical malpractice.

18. Something I really miss doing since my disability has progressed is: walking, running, exercising, not being in pain… it’s a long list.

19. It is really hard to go without: prescription drugs! Same answer as the last girl. But seriously I couldn’t get out of bed without them. Or stay in bed, so that’s a problem. But most of all I wouldn’t be able to take care of my kids.

21. If I could have one day of feeling normal again I would: Go on a hike with my family. Climb a mountain or something. Fit in as much as I possibly could.

22. My illness has taught me: You can never truly know, or judge, what another person is going through.

23. Want to know a secret? One thing people say that gets under my skin is: You’re faking it. You don’t really need that wheelchair. You’re in a handicap spot. You could work if you really wanted to. Basically any kind of doubt that I have the trouble that I have. I think that stems from having some actual family members and friends say things like that.

24. But I love it when people: Recognize that despite my disability, I’m just another person, mom, etc. When they make the effort to get to know the person in front of the disability (I don’t think I’m behind it, it’s behind me), instead of being prejudice.

25. My favorite motto, scripture, quote that gets me through tough times is: “Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy” James 1:2, and “Pray about everything; worry about nothing. Tell God what you need, and thank Him for all He has done.” Philippians 4:6

26. When someone is diagnosed I’d like to tell them: Don’t let anyone tell you what you can or can’t do.

27. Something that has surprised me about living with an illness is: Getting worse. I was always told it wouldn’t get worse. What they meant was that the brain damage wouldn’t progress.

28. The nicest thing someone did for me when I wasn’t feeling well was: A lot of things. Carry me, raise money for a wheelchair so I wouldn’t have to keep walking, accomodations and days off at work…

29. I’m going to get involved with Invisible Illness Week next year because: People need to be aware of what other people around them might be going through, and that they shouldn’t be quick to judge.

30. The fact that you read this list makes me feel: Funny way to end, but I’m glad you took the time to get to know me a little better 😉

You Can Still Eat Out Part 2: What to Order Where

*Sorry this is later than I said it would be; I compiled this list on Word, and I was having internet problems, so I was unable to transfer it and post it.*

As I mentioned before, eating right while eating out isn’t impossible. It just requires a little knowledge, maybe some research, and as always, a little self control.

Here are some of my go-to’s for my most frequented restaurants:

McDonald’s

Grilled chicken sandwich, no mayo. Their balsamic vinegar dressing is a good alternative if you have to have a condiment. It’s ok to leave the cheese on, and sometimes even the bacon 😉 The whole wheat bun they serve it on makes it doubly awesome.

Fruit N’ Yogurt Parfait. As a side of course. They are admittedly kinda high in sugar, but in my opinion that’s cancelled out by the calcium, fruit, and the fact that it’s still way better for you than French fries.

Cheeseburger. That’s right, sometimes you gotta just have a good old McD’s cheeseburger. That, and the calorie count is only 300. So that plus your yogurt makes for a reasonable lunch.

Apple Slices. I don’t order them, because I’m allergic. But you can order them. It doesn’t get much healthier than sliced fruit.

Salads. They offer an impressive variety of salads. I’m also allergic to lettuce, so I don’t order these either. But you can. Just remember to stick to grilled chicken instead of crispy, and be VERY careful with the dressings.

Since I’m me, and everyone has their own taste, I would recommend visiting their website to see what your options are. They even have an ‘Under 400 calories’ page.

Breakfast. Stick to English muffins instead of biscuits, ham instead of sausage, and yogurt instead of hash browns.

Burger King

I had to rewrite this one. I’ve never liked BK as a ‘healthy eating’ option. Their grilled chicken and buns are really dry, and they offer apples and salads, but no healthy side that I can eat. In my opinion, their burger and fries are better than McD’s, but if I’m trying to eat healthy, I skip BK. So when they came out with their Satisfries, I was really excited. Until I did some research.

I went to their website to find out the calorie and fat counts for both types of fries. Their website and commercials are all about how the new fries are 40% less fat and 30% less calories than regular fries. Naturally, since you’re at BK, you assume it’s less fat and cals than original BK fries. But when I looked at the numbers, I didn’t need a calculator to see that it was not a 40% difference. Wondering why the discrepancy, I went back to the home page. This time, I noticed the tell-tale asterisks next to the font. So, I read the fine print, which states: “*40% less fat than McDonald’s fries” & “**30% less calories than McDonald’s fries.”.

That just makes me mad. They are basically lying to the public. Sure, those little asterisks mean they can’t actually be sued, because they were ‘honest’, but really?? Why not just say that? Or why not just say ‘20% less fat and calories than BK fries.’

So there’s my rant. I don’t think restaurants should be allowed to legally mislead people. It’s wrong.

So anyway, if you can down their grilled chicken sandwich, and you aren’t allergic to raw fruits and veggies, go for it.

Otherwise, the Whopper Jr. isn’t too bad of an option. It’s got tomatoes and onions on it (which I’m not allergic to), so you have some veggies. Just remember to skip the mayo. Personally, I think Bk’s cheese is gross, so I don’t order it there, but again, that’s just my taste.

Taco Bell

This is my favorite fast food option. As long as you order your items without any cream based sauces, and stay away from the deep fried foods, you pretty much can’t go wrong.

These are their cream based sauces:

Creamy Jalapeno sauce

Baja sauce

Pepper Jack sauce

Volcano sauce

Avocado Ranch dressing

Sour cream

Nacho Cheese

Don’t worry, that doesn’t mean your food has to be boring.

Here are some toppings you can substitute, and they’re actually good for you:

Guacamole

Salsa

Pico de gallo

Cheddar cheese or three cheese blend

Red sauce

Tomatoes, onions, and lettuce

Their deep fried items are:

Potatos

Chips

Chalupas

Cinnamon Twists,

Empanadas

Edible taco salad bowls

What you can have instead:

Pintos & Cheese

A side of rice

Gorditas instead of chalupas

Subway

As everyone knows, Subway is another place you almost can’t go wrong.

My suggestions:

Ask for a whole grain bread (wheat or honey oat)

Load up on the veggies

Stay away from mayo and other cream based sauces and condiments

Oil and vinegar is ok; even good for you (they use olive oil)

Be careful with the chips. They offer baked chips and yogurt, which are better options.

Panda Express

I like Panda Express because there is no MSG, and they use fresh foods. Even better, they now offer brown rice. Their Wok Smart items are easy to spot, and have 250 calories or less per serving.

So if you can, I would stick to brown rice as a side, and choose Wok Smart entrees. Something with veggies is best of course 😉 But even I can’t resist their orange chicken once in a while.

At bigger, sit-down restaurants (Applebees, Olive Garden, IHOP, etc.), a lot of them now have a low cal or Weight Watchers menu. There are flavorful items with a reasonable fat and calorie count. Best of all, there is usually a side of fruit or steamed veggies.

If there is not an alternative menu, it can still be easy to eat right. Just remember to stay away from ‘crispy’ or fried items, stick to tomato based sauces instead of cream based sauces, and don’t forget your fruit or veggies.

So there are my restaurant secrets to eating right. If you have a smart phone, it’s easy to check nutrition facts on the quick.

Don’t forget to have desert once in a while!

You should know that I do not count calories (or fat) as a practice. I think it’s unnecessary and it over-complicates healthy eating. Especially since fat and calories aren’t what matter most in healthy eating. What matters most is making sure you get the vitamins, minerals, fats, protein, and carbs that your body needs. But it is important, especially when you’re losing weight, to know more or less how many calories and how much fat are in your food. Keeping it within a certain range each time you eat will help you stay in control and on track.

If there’s a restaurant you want specifics on, or you have a question about something, send me a message!

Help Wanted

Yesterday was a rough day. It made me realize I am quickly losing my mobility and independence. I fear I am losing my ability to take care of my own kids every day.
On Facebook, there is a Cerebral Palsy Support Group page. Sometimes they post member questions, so that other people that have experienced similar problems can provide ideas and insight. So I sent them a question. They haven’t replied to me or posted my question, but I wanted to ask all of you. Maybe some or one of you is experiencing this. Or maybe you have a friend or acquaintance that has dealt with it. My question was this:

“I have CP, I’m married, and I have 2 kids, ages 8 & 1. I can walk, but as time goes by, it is increasingly difficult and painful. Cooking is especially difficult. When I say cooking, this includes even simple things like making sandwiches. I used to be able to clean ok, but that is getting much harder, as is chasing around my 1 year old son. Sometimes we sit in the car and watch movies, just so he is buckled down and happy, so I can sit down for a while. My husband works as a cook and I have been on disability for a year. I have a wheelchair, but my house is small, and it doesn’t fit through the hall or doorways, or around the kitchen table, or really even around the living room. And of course, it doesn’t reach the kitchen counters or stove. I’ve tried cooking from a stool, but having to get up and down a lot is worse than standing and walking, so that doesn’t work. I can tell I am rapidly losing mobility, and I don’t know what to do to be able to take care of my house and my kids. I was wondering if anyone else is going through this and what do they do?”

Please, chime in 🙂
The obvious answer would be to hire a someone to cook and clean for me, but I don’t have the resources right now. To my fellow Americans, would any type of insurance or government program cover anything like this?

What do I do?

**Please keep answers polite, any mean-spirited responses will be deleted. Thank you :)**