A New Adventure

I have some exciting news: my (dis)abled life has now become its own website, mydisabledlife.com! I am really, really excited about this, and all of you, if you are willing, can help my goals become a reality by doing a few easy things.

Step 1: Go to my new website and follow me there instead of here, by subscribing by email right there on my page.

Step 2: Keep reading! I know it’s not as convenient as having it right here in the WordPress feed, but I love being able to share with all of you, and celebrate and commiserate. Let’s stay in touch!

Step 3: Share! This one is just as important. I want to have an affect on the world. Not just me, but the disabled community, and our friends. We see things differently, and our point of view is vital to making the world a better place. If you read a post that gets you revved up, please share! I have convenient little share buttons under each post, even on the mobile version, where you can share to just about any social network, and even email a post. Please do!

A few other things I want to mention:

  • My plan was to contact you all individually, but I couldn’t figure it out. Ironically, I am not very good at technology.
  • Speaking of not being good at technology, my site is not perfect yet, I’m still working out the kinks.
  • There is probably a better, preferred way to go about letting you all know to go to my new site, I just don’t know what it is. (See bullets 1 &2)

Thank you to everyone, for supporting me this far. I hope we can keep the relationship going!

The Challenges of Being an Adult with CP

I stumbled upon this article from Disabled World that validated almost my whole life. I thought I’d share it with all of you. I don’t know if any of you with CP or other disabilities feel like you’re constantly having to defend yourself like I do, but with the lack of information for adults with disabilities, I wanted to share this golden article. It is aimed specifically at cerebral palsy, but having friends with other disabilities, I know that  questioning what you’re going through, as well as having others question what you’re going through, is pretty common throughout the disabled community.

Under each section, I’ve noted my own experience in that area.

Here is the article’s URL:

http://www.disabled-world.com/artman/publish/health-challenges.shtml

“Before the mid-twentieth century, few children with cerebral palsy survived to adulthood. Now, because of improvements in medical care, rehabilitation, and assistive technologies, 65 to 90 percent of children with cerebral palsy live into their adult years.

Before the mid-twentieth century, few children with cerebral palsy survived to adulthood.

It is amazing, and sad in a way, to think that if I had been born 100 years earlier, I might not have survived to adulthood. Because my CP doesn’t adversely affect the functions that keep me alive, such as eating and breathing, I think I might have survived. But my quality of life would be horrible. I think of all the surgeries I’ve had, and how if I wouldn’t have had them, I wouldn’t have use of my legs at all. I probably would have completely lost use of my legs at a very young age.

Now, because of improvements in medical care, rehabilitation, and assistive technologies, 65 to 90 percent of children with cerebral palsy live into their adult years. This increase in life expectancy is often accompanied by a rise in medical and functional problems – some of them beginning at a relatively early age – including the following:

I have my fair share of medical and functional problems. It’s nice to see that it is actually real and normal for someone with CP to experience this.

Premature aging. The majority of individuals with cerebral palsy will experience some form of premature aging by the time they reach their 40s because of the extra stress and strain the disease puts upon their bodies. The developmental delays that often accompany cerebral palsy keep some organ systems from developing to their full capacity and level of performance. As a consequence, organ systems such as the cardiovascular system (the heart, veins, and arteries) and pulmonary system (lungs) have to work harder and they age prematurely.

Functional issues at work. The day-to-day challenges of the workplace are likely to increase as an employed individual with cerebral palsy reaches middle age. Some individuals will be able to continue working with accommodations such as an adjusted work schedule, assistive equipment, or frequent rest periods. Early retirement may be necessary for others.

After being accused of being lazy, uneducated, unintelligent, entitled, and a liar, and the list keeps going, it is nice to see this also. I hear this not only as an adult who can’t work, but when I was a child in school as well.

I was lucky enough in my last job to work at a place that was more than willing to make accommodations for me. My boss gave up her desk so I wouldn’t have to stand, I tried working from my wheelchair, and even though we had a business casual dress code, I was allowed to just wear sneakers. After everything, the pain and fatigue was still overbearing.

I specify ‘at my last job’, because I’ve worked at plenty of places that were not willing to make accommodations, such as letting me sit on a stool instead of standing. I’ve been denied jobs and positions because of my disability, and I know others who have had similar experiences.

Depression. Mental health issues can also be of concern as someone with cerebral palsy grows older. The rate of depression is three to four times higher in people with disabilities such as cerebral palsy. It appears to be related not so much to the severity of their disabilities, but to how well they cope with them. The amount of emotional support someone has, how successful they are at coping with disappointment and stress, and whether or not they have an optimistic outlook about the future all have a significant impact on mental health.

My experience with disability-related depression didn’t start until I started losing the mobility that I had. Having CP didn’t bother me as a kid. The bullying hurt, during the times it got really bad, but overall, I saw myself the same as everyone else. Losing my mobility and not being able to stop it has been a source of depression for me, because my life is not what I dreamed it would be. However, I believe that is only circumstantial. It might take a while, but I still dream and I still believe I can reach my goals. Like everything else I do, I’ll just have to find a different way.

Post-impairment syndrome. Most adults with cerebral palsy experience what is called post-impairment syndrome, a combination of pain, fatigue, and weakness due to muscle abnormalities, bone deformities, overuse syndromes (sometimes also called repetitive motion injuries), and arthritis. Fatigue is often a challenge, since individuals with cerebral palsy use three to five times the amount of energy that able-bodied people use when they walk and move about.

This point is actually why I found this article. I have been experiencing such extreme fatigue and weakness, mixed with pain that I feel like Superman strapped to Kryptonite. It makes me really sad when my kids want to play, but I can’t do anything but squeeze my pillow and try not to scream. That’s when the words hurt the most.

 Osteoarthritis and degenerative arthritis. Musculoskeletal abnormalities that may not produce discomfort during childhood can cause pain in adulthood. For example, the abnormal relationships between joint surfaces and excessive joint compression can lead to the early development of painful osteoarthritis and degenerative arthritis. Individuals with cerebral palsy also have limited strength and restricted patterns of movement, which puts them at risk for overuse syndromes and nerve entrapments.

I haven’t been diagnosed with these, because a lack of insurance keeps me from pursuing help, but I am convinced I have at least one of them.

Pain. Issues related to pain often go unrecognized by health care providers since individuals with cerebral palsy may not be able to describe the extent or location of their pain. Pain can be acute or chronic, and is experienced most commonly in the hips, knees, ankles, and the upper and lower back. Individuals with spastic cerebral palsy have an increased number of painful sites and worse pain than those with other types of cerebral palsy. The best treatment for pain due to musculoskeletal abnormalities is preventive – correcting skeletal and muscle abnormalities early in life to avoid the progressive accumulation of stress and strain that causes pain. Dislocated hips, which are particularly likely to cause pain, can be surgically repaired. If it is managed properly, pain does not have to become a chronic condition.

This has been my experience my whole life, and again, I am so glad to see this in writing. Even when I was a child and didn’t have the extent of pain that I do now, doctors and teachers would brush me off, and sometimes even accuse me of lying. As an adult, I can genuinely say that the doctor I have now is the only doctor who believes what I say and tries to help. All other doctors have treated me like I was just looking for attention or drugs (even before I knew there were drugs to help with pain), or told me I just needed to exercise more.

Unfortunately, I stopped getting preventive care at the age of 13. I think a lot of my issues now could have been prevented, but since I can’t change it, I just do what I can to take care of myself now. Somehow that’s not a very popular decision.

Other medical conditions. Adults have higher than normal rates of other medical conditions secondary to their cerebral palsy, such as hypertension, incontinence, bladder dysfunction, and swallowing difficulties. Curvature of the spine (scoliosis) is likely to progress after puberty, when bones have matured into their final shape and size. People with cerebral palsy also have a higher incidence of bone fractures, occurring most frequently during physical therapy sessions. A combination of mouth breathing, poor hygiene, and abnormalities in tooth enamel increase the risk of cavities and periodontal disease. Twenty-five percent to 39 percent of adults with cerebral palsy have vision problems; eight to 18 percent have hearing problems.

I do have an abnormal curvature of the spine (that was discovered along with the broken vertebrae I talked about in my last post). That causes a lot of my back pain. I also have abnormalities in tooth enamel, so, as a result of extensive, painful dental work at a young age, I am terrified of dentists. I am very, very thankful not to have hearing or vision problems.

Because of their unique medical situations, adults with cerebral palsy benefit from regular visits to their doctor and ongoing evaluation of their physical status. It is important to evaluate physical complaints to make sure they are not the result of underlying conditions. For example, adults with cerebral palsy are likely to experience fatigue, but fatigue can also be due to undiagnosed medical problems that could be treated and reversed.

The only regular visits I make to the doctor are to get my prescriptions refilled. He has mentioned a few times that some of my issues could be taken care of with a couple surgeries, but without insurance, he knows I cannot afford them. Hopefully soon that will change. Though surgery will be difficult, I would much rather go through a hard surgery and recovery and be free from some of these pains than to just hide them with medication day in and day out.

Sometimes I worry that my fatigue and weakness could be from an underlying condition that I am unaware of. Again, without insurance, I am not able to find out.

Because many individuals with cerebral palsy outlive their primary caregiver, the issue of long-term care and support should be taken into account and planned for.

At first I thought “This is something that I don’t have to worry about.” But then I realized how quickly I am losing my mobility. To me, the future is even more unknown than for others. I don’t know what will happen to my body down the road; if and how it will continue to deteriorate. Unlike most of the people this section is referring to, I am married, but what if something happens to him, or what if he passes before I do? Oh well, I guess that’s what we have kids for, right? 😉

One of the most frustrating things about being disabled is getting teased, made fun of, and denied friendship, jobs, and other things based on your disability, and then turning around and not being believed by doctors, teachers, and even family members about issues regarding that same disability.

I would like to note that I do not say anything in this post out of anger or self-pity. I say them because 8 or so years ago, when I started seriously having trouble because of my disability, there was no information or support. Doctors were rude and patronizing, and internet searches only led to articles about children with CP. I thought, “Children with CP turn into adults with CP, so why is there no information for us?”. I want all of you with disabilities to know that you’re not crazy, and you’re not over-reacting or looking for attention. This is real. If you feel it, it’s real. So take care of yourself. Search for answers, and don’t let anyone tell you you’re imagining it.

I also think it’s important for parents of children or adults with disabilities, or teachers, or doctors, or friends and family members, to be attentive to what that person is telling you. Take them seriously. Don’t baby them or try to remove every obstacle, that hurts more than it helps, but don’t brush them off.

I’ve also come to realize over the past few days, that these people who are telling me that I’m just not trying hard enough, that I should keep working or doing this or that in spite of my body, have never had a disability. They may have had to overcome difficult situations, apathy, or short term pain or fatigue, but they have not had to live the life of a disabled person day in and day out. They have never been unable to walk on a daily basis, or experience years of extreme, chronic pain and weakness, with no end in sight. They have no idea.

So why are they holding me to their ‘standards’? More importantly, why am I letting myself feel guilty about it?

Falling through the gap between health and finances

A couple weeks ago I fell. This isn’t surprising really – like most people with physical disabilities, I fall all the time. And usually I just get back up and go on with my day; only a new bruise to show for it. But sometimes it’s worse than just a bruise, and this was one of those times. I was carrying Cruz to his crib for a nap. Starting into his room, I tripped on a large toy. I hit the door frame hard with my forearm, then a bookcase with the other arm. Trying not to land on him or slam him into the wall, I flung myself in the other direction and landed on the top side of my thigh, on the floor. Cruz’s leg was under me and he was crying. Still lying on the floor, I grabbed his leg and tested it to make sure it wasn’t broken. He was ok though, after a few second he got up and ran to play with his toys.

I lay there for a moment, a sharp pain running through my right arm and left hip, and my left arm aching. I got up and let Cruz play for a moment, and then laid him in his crib. I had been planning to return to my blogging, but I was pretty shaken up from the fall so I laid on my bed instead.

As the day went on, I started to wonder if I had broken my arm. I could barely move my fingers, I couldn’t turn my arm, and now I was having pains like needles stabbing my arm. My thigh was hurting too, and had a growing, giant bruise and was noticeably swollen, but most of it was in an area I don’t have any feeling in, so it didn’t bother me much.

Was it worth it to go to the emergency room? I don’t have insurance. I pay out of pocket for my doctor visits and monthly prescriptions. Was it worth paying for the ER, the doctor, and the X-ray out of pocket, possibly only to find out that I had bruised the bone?

But what if I didn’t go and it was broken? It’s my right arm. Which is even more important to me than most people: my left hand is pretty affected by my CP, I can’t hold a pencil or write, or do much of anything with it. To give you an idea, in high school I had to drop American Sign Language because I couldn’t do most of the signs that required two hands. In middle school I sprained my right hand and couldn’t write with it. When I (finally) turned in a Language Arts assignment written left handed, the teacher got mad and said that it looked like it had been written by a two year old and how was she supposed to read it.

So, back to my arm. It didn’t really feel broken, but then again, I didn’t really know what broken felt like. With CP I have some sensory issues. Pain comes across more like agitation, at least when it’s new. And every time I’ve broken a bone I didn’t know until way later. When I was 7 I tripped and hit the cement on the way to PE. It hurt, but with the rest of my class watching, I held back the tears and kept walking. Then I did PE as usual. A few days later spring break started, and my little brother and I flew to California to visit my dad. We went to Disneyland and Sea World that week. When we got home from the trip I guess I was still complaining about my knee, or maybe it was swollen, because my mom decided to take me to the doctor, and we found out I had a broken knee cap.

When I was 10 I was playing tag with some friends and I fell, catching myself with my pinky. My mom put some frozen broccoli on it, but the next day we went to the doctor and found out it was broken.

When I was 22 I went into the ER for severe back pain. They did an X-ray, and while the X-ray didn’t show a reason for the current back pain, it did show something else: I had a broken vertebrae, but they could tell by the way that the edges were rounded instead of jagged, that it had been that way for years. They said the way and the place (above the shoulder blades) it was broken looked like it was from falling down stairs, or falling in a similar way. The last time I had fallen down the stairs, or fallen on my back, was when I was 15 – seven years before.

I had declined to go to the ER because I knew it was a lot of money and a lot of hassle, and it did hurt, but I felt like I was more shaken up and scared than anything, so I just lay on my bed for a while.

So, all that to say, I didn’t really feel like I was a good judge of broken bones. Especially given the stabbing pains and inability to move my arm. Everyone I talked to thought it might be broken. I waited all day, but at 8 PM, I decided I didn’t want to sleep that way, and potentially move around a broken bone that would have to be pushed back into place or reset, so we went to the ER.

After a torturous X-ray, having to twist and turn my arm and hold it in place, we found out that it was not broken. Which was kind of bittersweet, since now I felt like the trip was pointless. The doctor handed me a copy of the X-ray, said “It’s not broken, it’s just bruised or sprained, stay off of it.” And walked out. 5 seconds. I can’t wait to see how much I’m going to get charged for that.

I feel like I, and other disabled people, should not have to have such an inner battle about whether or not to go to the doctor or ER if we think something is really wrong. That we shouldn’t have to be so terrified of either enduring a potentially unnecessary hospital bill or endangering the health that we have.

Now, before some of you make the judgment that I made a bad decision in not having medical insurance, consider this:

  • I had to leave my job, which we had insurance through (the only job I’ve ever had that offered insurance) because I could no longer work.
  • Though I am on Social Security Disability, I (and all SSD recipients) am not eligible to purchase a Medicare plan until I’ve been disabled for 24 months. I find that ironic. A: I’ve been disabled for 28 years. In fact, my parents received SSI for me when I was a kid. B: Disabled people get hurt more, and have more ongoing medical issues. What are we supposed to do for those two years, and why is this necessary when we’ve already been determined to be disabled? *Note I said purchase Medicare. It is not free.
  • When I shopped for individual insurance plans, they priced at about $500 per month. That of course does not include deductibles, copays, and other costs not covered by insurance. If you had to choose between buying insurance or putting food on the table for your family, which would you choose?
  • I (and other disabled people) am not able to just go get an extra job and work harder to afford insurance. Or get a job that offers insurance. I’m stuck in this situation until I am eligible for Medicare, or until I am making lots of money from blogging and can afford my own insurance. Unfortunately, I think the Medicare thing might come first.

I am applying for financial assistance for the hospital bills, but I don’t know if I’ll qualify, since I’m married and my husband has an income.

I realize that all of this is about to change with Obamacare kicking in (DISCLAIMER: I am neither for, nor against Obamacare at this point. I am glad that we will have a system, however imperfect at the moment, that will give everyone a chance at insurance.), but in the meantime, I was unfortunate enough to take a big fall a couple of months before insurance would be made available to ‘people like me’. (ANOTHER DISCLAIMER: I do not feel ‘entitled’ to, nor would I receive, insurance at a free cost. Only a reasonable one. Where I wouldn’t have to choose between food and medical care.)

My arm is feeling better now. The hospital didn’t give me a brace or a bandage, but I’ve fallen so much that I have my own. It still hurts, but I can move my arm and type. My thigh, oddly enough, is actually feeling worse. The bruise is almost gone, but I feel a lot of stabbing pains in the places I can feel, and it’s still swollen in the joint area. However, I will not be going to the doctor for it.

I feel that there should be consideration for those of us who are disabled. We don’t choose to have a disability. We do not choose not to work. We don’t choose the extra health problems or the risks involved. These are the cards we are given, and we do our best to make the most of what we’re given, and shine through it. I am not looking for pity, I’m only saying that we shouldn’t be left stranded with no insurance, no way to get it, and a choice between risking our wellbeing and getting stuck with enormous hospital bills. The hospital might be getting $10 a month from me for a very long time.

Spina Bifida Awareness: Symptoms and Diagnosis

**Forgive me that it took so long to post this. At first I had some technology problems. Then I fell and landed on my arm, and couldn’t type, but more about that later.**

 

Unlike most cases of CP, Spina Bifida is usually recognizable at birth. There is almost always an opening in the back where the spine is exposed, or a bulge on the back from protruding spinal contents. There can also be other visible complications, such as club foot and hydrocephalus. Depending on the level of function, babies with Spina Bifida tend to have less movement than other babies, specifically in the lower body, or from the defect down.

Usually the only time Spina Bifida does not show symptoms and diagnosis immediately at birth, is in cases of Spina Bifida Occulta. This form of Spina Bifida is a small separation in the spine, which usually doesn’t cause any physical problems. In fact, 15% of people have it and don’t know it [SpinaBifidaAssociation.com]. It is sometimes accidentally discovered during an X ray done for a separate problem.

There are also ways to diagnose Spina Bifida before birth. There are prenatal tests that show signs of Spina Bifida, however, these tests are not 100% accurate. The AFP Screening tests for high levels of alpha –fetaprotein, which tends to be (but is not always) higher in cases of Spina Bifida. Also, only a small percentage of those who test high for the protein have Spina Bifida. [mayoclinic.com]

Amniocentesis is an optional screening, in which a sample of amniotic fluid is taken. With this test they are also looking for elevated levels of AFP, which will be apparent in cases of Spina Bifida, because the skin that should surround the spine is not there, allowing the AFP to leak into the amniotic fluid. This test presents a small risk of loss of pregnancy. [mayoclinic.com]

Both of these tests can be compared with other procedural blood tests to determine an elevated risk of SB or other defects. [mayoclinic.com]

I would like to restate the fact that a positive result of these tests is not necessarily a diagnosis of SB or another defect. There are other reasons for elevated hormone or protein levels.

An ultrasound can also show signs of Spina Bifida, such as a visible opening in the back, or other tell-tale characteristics.

Today, about 90% of cases of Spina Bifida are diagnosed during pregnancy, with an ultrasound and verifying prenatal tests. Special prenatal care is then given, and the opening in the back is surgically closed within 24 hours of birth. [betterhealth.vic.gov]

But in 1984, the year Kate was born, this was not the case. They didn’t start testing for Spina Bifida until 1985. They only did ultrasounds for emergencies, and even then they were not detailed enough to show signs of Spina Bifida in the spine or brain. That being her mother’s first pregnancy, she didn’t have anything to compare it with to know that the baby didn’t move as much as other fetuses. And doctors didn’t know to ask all of the developmental questions that they ask now. So when Kate was born with an exposed spine, it was an unexpected shock. She had surgery to close the opening two hours after being born.

Kate and I are glad that we were born in an era with so much technology and knowledge that some of our would-be disability issues are solved before they even happen. And some that are not solved are greatly reduced. But sometimes, just sometimes, we wonder what life would be like if we had been born 20 years later. When they knew things like how folic acid affects pregnancy, greatly reducing the risk of Spina Bifida. Or how stem cells from cord blood can aid in healing a young child with CP. The cool thing, if you think about it, is that we were the guinea pigs that helped them make some of the discoveries that work now. We helped make today’s disabled kids’ lives a little easier. I guess God knows what he’s doing.

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Spina Bifida Awareness: Causes of SB

Previously, because of what I learned in Biology class, I had thought Spina Bifida to be a genetic birth defect. Through the research for this post, I found out that there is really no single cause of Spina Bifida, but it is thought to be a combination of genetic, environmental, and nutritional factors.

That is a lot like CP in a way, because if you read my CP Awareness posts, you’ll find out that there are many different factors that can cause CP as well.

This took a lot more research on my part than my CP Awareness posts, because since I don’t live with it, I don’t have a lot of first-hand knowledge about it.

So mostly what I have below are pieces of articles that I have quoted from online sources. Read on!

“There is neither a single cause of spina bifida nor any known way to prevent it entirely. However, dietary supplementation with folic acid has been shown to be helpful in reducing the incidence of spina bifida

 “The U.S. Food and Drug Administration, Public Health Agency of Canada and UK recommended amount of folic acid for women of childbearing age and women planning to become pregnant is at least 0.4 mg/day of folic acid from at least three months before conception, and continued for the first 12 weeks of pregnancy. Women who have already had a baby with spina bifida or other type of neural tube defect, or are taking anticonvulsant medication should take a higher dose of 4–5 mg/day.

“Certain mutations in the gene VANGL1 are implicated as a risk factor for spina bifida: These mutations have been linked with spina bifida in some families with a history of spina bifida.”     [Wikipedia]

DSCF1173

Spina Bifida is most common among hispanic women, and there are increased incidences of Spina Bifida in areas with a large amount of farm land. [Source: Kate. She learned this at the Spina Bifida Association National Conferences.]

That spiked my curiosity. Why would it be more common in areas with a lot of farm land? Why would that matter? If anything I would think it would be less common, because I would think that the people in those areas have better diets and get more exercise. Kate’s theory is that it could be higher due to pesticides. And that totally makes sense. But it makes me wonder why they don’t do more research on the subject. If that’s true, it goes beyond just ingesting something that’s ‘bad for you.’ That’s eating chemicals that could cause your children to have debilitating birth defects; in some cases even life threatening. Scary.

So I looked a little further. This is what I found:

“New research shows that babies conceived in the spring and early summer have a higher risk for a wide range of birth defects, including Down syndrome, cleft palate, and spina bifida.

The reported increase in birth defects was modest, but it coincided with a similar spike in groundwater pesticide levels during the spring-early summer planting season.

These findings suggest that pesticide exposure may influence birth outcomes nationwide, researchers say.

“There appears to be a season of conception in which the risk of having a child with a birth defect is higher,” Indiana University School of Medicine neonatology professor Paul D. Winchester, MD, tells WebMD.

“This study does not prove that pesticides cause birth defects, but we set out to show that they did not and we were not reassured.”” [WebMD.com]

Interested in reading what they found? Click here.

Detection during pregnancy:

“Neural tube defects can usually be detected during pregnancy by testing the mother’s blood (AFP screening) or a detailed fetal ultrasound. Increased levels of maternal serum alpha-fetoprotein (MSAFP) should be followed up by two tests – an ultrasound of the fetal spine and amniocentesis of the mother’s amniotic fluid (to test for alpha-fetoprotein and acetylcholinesterase). AFP tests are now mandated by some state laws.

“Genetic counseling and further genetic testing, such as amniocentesis, may be offered during the pregnancy, as some neural tube defects are associated with genetic disorders such as trisomy 18.”

“Ultrasound screening for spina bifida is partly responsible for the decline in new cases, because many pregnancies are terminated out of fear that a newborn might have a poor future quality of life. With modern medical care, the quality of life of patients has greatly improved.

[Wikipedia]

That part made me sad, because, personally, as a disabled person, I’m glad that I get the opportunity to live my life. I would rather live, disability or not, than not live my life because it might be more difficult. Also, having been recently pregnant, I know the tests detect the signs and possibility of defects, but only that, a possibility. The child could be just fine.

Prevention:

“If you are pregnant or could get pregnant, use the following tips to help prevent your baby from having spina bifida:

  • Take 400 micrograms (mcg) of folic acid every day. If you already have had a pregnancy affected by spina bifida,  talk with your doctor about a prescription to take 4,000 mcg (4.0 milligrams). Folic acid prevents most, but not all, cases of spina bifida.
  • Talk to your doctor or pharmacist about any prescription and over-the-counter drugs, vitamins, and dietary or herbal supplements you are taking.
  • If you have a medical condition―such as diabetes or obesity―be sure it is under control before you become pregnant.
  • Avoid overheating your body, as might happen if you use a hot tub or sauna.
  • Treat any fever you have right away with Tylenol® (or store brand).”

[CDC.gov]

Do you think pesticides cause SB and other birth defects? If you have SB, do you know the cause? Do you live in an area with a lot of farm land? Weigh in!

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.

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

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