I-couldnt-do-it

Please Don’t Praise Me for Loving My Child With a Disability

It happens to most of us as we parent kids with disabilities, we hear statements like, “You are amazing, I could never do it.” “It must be so hard.”

I couldn't do it

Yes, it’s true, sometimes parenting kids with disabilities can be hard. We do have extra challenges that most parents of typical children don’t have to deal with, and our lives might look a little different than yours. But I hope you recognize that our lives look similar to yours too.

Can I be honest with you? Some of these comments – after a while – make me feel as if you think my child is not as lovable, and only certain people would be able to love my child or parent her. When you praise me for parenting my child, it says to me you feel fortunate she’s not your child because that would be hard and terrible and tragic. I know that’s not what you’re trying to communicate, I know that, but sometimes it does.

If I saw a friend with her typical child and I pointed at her kid and said, “I could never do it.” I think we would all agree it would be rude. That statement would say a lot about what I thought about her child, most likely not positive because I just said I could never do it. “What do you mean?” She’d probably ask offended. “I mean, it must be so hard to parent YOUR child!” Maybe right then she would have day dreams of punching me in the face. But I would not be surprised if she picked up her kid and walked away from me, offended, and reassuring her child he is loved, and wonderful, and she is lucky to be his mom.

It’s no different when I hear that. That’s how it makes me feel.

You see, the world tells us that disability is bad. When my youngest daughter was born with Down syndrome my midwife cried and the pediatrician shook his head and said he was sorry for giving us such bad news.

When we adopted our daughter who has cerebral palsy, a lady asked my husband, “Couldn’t you find a healthy one?”

Look back in history, we have not treated persons with disabilities as people. We have not treated them as equals. We still fight those messages and ideas today. Ask an adult with a disability how most of our society treats them, and think about how you would feel if you were judged based on your limitations. As the mother of two kids with disabilities, this pains me, because most people don’t know what I know, they don’t see what I see. They’re not part of our Friday night movie nights. Or our family vacations. They don’t see the pure joy of watching them dance and laugh and be kids. Disability is not a tragedy, what is tragic is how the world views disability.

I love my kids.  And I’m not extraordinary for loving them, I’m their mom! How could I possibly not love them? How could I possibly not be their advocate, their teacher, their greatest supporter? You don’t think you could do it? Yes, yes you could do it! You would do it because you love your kids. And I am who you would be if your child had a disability. Having kids with disabilities is not reserved for the special few. It happens to me, to you, to my neighbor, and to the millionaire. Disability is part of life.

Comments that praise me for loving my child suggest that while everyone else got high speed wireless internet, I’m stuck with dial up. I mean that stinks, dial up of all things! “So sad you can’t enjoy the internet or participate in social media like the rest of us, I could never do it, I could never do dial up. I know what high speed wireless internet is like, it must be so hard to wait for the dial while everyone else is already on Facebook.”

My child is not the least desirable option, she’s not dial up, she’s a person. She has a unique personality, gifts, talents, ideas, likes and dislikes,  a temper, a sense of humor, a big laugh, a tendency to melt my heart, and her arms wrap tight around my neck letting me know she loves me too.

mom

Please, don’t hear me say I don’t want your support or encouragement, because I do. If you think I’m doing a good job, just say that, “Hey, you’re doing a great job.” If you think I look frazzled and you see my child is having some difficulties, I might be having a hard day, and if you really don’t know how I do it, chances are I might not know how to make it through the day either, so what about, “How are you doing?” Open the conversation, ask questions, let me know you care.

But please remember, I’m not amazing for loving my child, neither are you for loving yours. It’s what we do, we love our kids.

Look at your child, because you know no matter what happens, you will never stop loving your kids and you would do anything for them. If there was an accident and your child ended up disabled, you would care for them and love them just as fiercely as you do now.

I don’t feel I got the wrong end of the deal, I’m not stuck with dial up. I feel like the luckiest mom to call these kids my own. Please don’t praise me for loving my kids, they are lovable, they are mine.

source;http://www.ellenstumbo.com/

f68fd44bb5289c318616994a897f7393

Yes, I’m disabled, but I still love sex. I just wish I had started having it sooner-myalgic encephalomyelitis

If I had known I’d get hit with a disabling neuroimmune illness when I was 24, I wouldn’t have waited until I was 20 to lose my virginity. I would have gotten an earlier start, making the most of my body while it fully cooperated.

When I was able-bodied, guys asked such as questions “Have I seen you before in a dream?” or “What did Botticelli do after he painted you?” Cheesy questions, no doubt, but imbued with the assumption I’m a sexual being. After I became disabled, they tacked on still dumber questions, such as “Are you contagious?” Or even “Can you have sex?” (More than once, I’ve answered, “Yes, but not with you.”)

Sex is a potential minefield for all of us, but for years, I’ve had to dodge the shrapnel on crutches.

 Image result for YES, I’M DISABLED, BUT I STILL LOVE SEX. I JUST WISH I HAD STARTED HAVING IT SOONER-MYALGIC ENCEPHALOMYELITIS

I’m 49 now and have had myalgic encephalomyelitis, or ME – often inaptly called chronic fatigue syndrome – for more than half my life. My symptoms include constant temperature fluctuations, increased susceptibility to secondary infections, dangerously low blood pressure, dizziness, swollen lymph nodes, extreme sensitivity to light and sound, frequent nausea, ongoing pain and punishing fatigue. (To say I’m tired is to say a person with pneumonia has a cold.)

On my best days, I feel as though I have a powerful flu. I’ve had two bouts in a wheelchair and a few long stretches when I could walk on my own, but almost always I need a cane or crutches to remain ambulatory. I walk a mile to a mile and a half each day with my gear, stopping as necessary, but supremely grateful. According to the Institute of Medicine, roughly one-fourth of people with ME become housebound at some point, so I’m thrilled that I’ve stayed surprisingly fit, even if I must spend most of my waking hours lying flat.

None of which sounds sexy, I know.

Even I think, “How have I had great sex despite that cartload of symptoms?” And, if I’m honest, “Please, please, please, may I have a time machine so I can go back and be well again or fast-forward to the discovery of a treatment or cure?”

Unfortunately, time-travel research lags. And while the National Institutes of Health, the Centers for Disease Control and Prevention and Stanford University’s team, led by a Nobel laureate, are working to treat or cure ME, so far, they’re just slightly ahead of time travel. They have established that ME is multi-systemic, degenerative and potentially fatal. Possible treatments are in the offing. So far, though? Zilch.

Which means I’ve adapted, mostly because I’ve had no choice. I still love sex. Parts of me are disabled, but my libido is strong as hell. Yes, I’ve had ME throughout most of my sex life. But I’ve stayed sexually active, learning to accommodate my needs and my partners’ needs without ending up in traction or in the morgue. It has required creativity, playfulness and the sonar of a bat. All of which should be part of the deal, anyway.

In a weird way, disability brings me closer to my partners because we have to communicate openly from the start. Doofuses can’t hack it. (I’ve had several long-term relationships. I’m single again because my partner died seven years ago and I ended an engagement last year.)

The U.S. Census shows that 1 in 5 Americans has a disability. Anecdotal evidence (online and in-person support groups, for instance) suggests that many of us are sexually active and have found ways to work with or around our disabilities to have fulfilling sex lives.

Let’s pause and note that disability is a big tent. Not all of us have the same symptoms and not all of us have the same physical parameters. I have one of what is called the “invisible disabilities” – a term often used to describe ME, multiple sclerosis, lupus, Lyme disease and others – wherein a person is extremely ill but usually looks well. (Several times a week, a stranger notices my crutches and asks, “What’d you do to your leg?”)

Of course, some persons have disabilities that preclude sex entirely. Or, say, a person undergoing chemotherapy might want or need to avoid sex temporarily. It’s imperative that their wishes be met. No one with a disability should be pressured into sex when their body will not accommodate it. Nor should anyone treat them like a sub-species of human. If a person with a disability can’t have or doesn’t want sex, that doesn’t mean they don’t want or need love. That should be clear to all sentient adults.

Too often, the able-bodied seek examples of high-performing persons with disabilities. And many of us are high-performing, maintaining careers and active sex lives. But it’s hard. Harder than an able-bodied person can know. We’re held up as examples, though, as if to chide persons with other disabilities, “See? Look what you can do if you try!” And that’s unfair. Each person with a disability is navigating life as their body allows, inside and outside the bedroom.

Was sex easier for me when I was able-bodied? Unquestionably. Is it still fun for me now? Hell, yes. I’m grateful I can still romp. I’m particularly grateful when a partner understands my body.

In this way, at least, the disabled and the able-bodied might have more in common than they know.

source;http://www.newsobserver.com/

YES, I’M DISABLED, BUT I STILL LOVE SEX. I JUST WISH I HAD STARTED HAVING IT SOONER-MYALGIC ENCEPHALOMYELITIS

 

christiana-jones

If I had known I’d get hit with a disabling neuroimmune illness when I was 24, I wouldn’t have waited until I was 20 to lose my virginity. I would have gotten an earlier start, making the most of my body while it fully cooperated.

When I was able-bodied, guys asked such as questions “Have I seen you before in a dream?” or “What did Botticelli do after he painted you?” Cheesy questions, no doubt, but imbued with the assumption I’m a sexual being. After I became disabled, they tacked on still dumber questions, such as “Are you contagious?” Or even “Can you have sex?” (More than once, I’ve answered, “Yes, but not with you.”)

Sex is a potential minefield for all of us, but for years, I’ve had to dodge the shrapnel on crutches.

I’m 49 now and have had myalgic encephalomyelitis, or ME – often inaptly called chronic fatigue syndrome – for more than half my life. My symptoms include constant temperature fluctuations, increased susceptibility to secondary infections, dangerously low blood pressure, dizziness, swollen lymph nodes, extreme sensitivity to light and sound, frequent nausea, ongoing pain and punishing fatigue. (To say I’m tired is to say a person with pneumonia has a cold.)

On my best days, I feel as though I have a powerful flu. I’ve had two bouts in a wheelchair and a few long stretches when I could walk on my own, but almost always I need a cane or crutches to remain ambulatory. I walk a mile to a mile and a half each day with my gear, stopping as necessary, but supremely grateful. According to the Institute of Medicine, roughly one-fourth of people with ME become housebound at some point, so I’m thrilled that I’ve stayed surprisingly fit, even if I must spend most of my waking hours lying flat.

None of which sounds sexy, I know.

Even I think, “How have I had great sex despite that cartload of symptoms?” And, if I’m honest, “Please, please, please, may I have a time machine so I can go back and be well again or fast-forward to the discovery of a treatment or cure?”

Unfortunately, time-travel research lags. And while the National Institutes of Health, the Centers for Disease Control and Prevention and Stanford University’s team, led by a Nobel laureate, are working to treat or cure ME, so far, they’re just slightly ahead of time travel. They have established that ME is multi-systemic, degenerative and potentially fatal. Possible treatments are in the offing. So far, though? Zilch.

Which means I’ve adapted, mostly because I’ve had no choice. I still love sex. Parts of me are disabled, but my libido is strong as hell. Yes, I’ve had ME throughout most of my sex life. But I’ve stayed sexually active, learning to accommodate my needs and my partners’ needs without ending up in traction or in the morgue. It has required creativity, playfulness and the sonar of a bat. All of which should be part of the deal, anyway.

In a weird way, disability brings me closer to my partners because we have to communicate openly from the start. Doofuses can’t hack it. (I’ve had several long-term relationships. I’m single again because my partner died seven years ago and I ended an engagement last year.)

The U.S. Census shows that 1 in 5 Americans has a disability. Anecdotal evidence (online and in-person support groups, for instance) suggests that many of us are sexually active and have found ways to work with or around our disabilities to have fulfilling sex lives.

Let’s pause and note that disability is a big tent. Not all of us have the same symptoms and not all of us have the same physical parameters. I have one of what is called the “invisible disabilities” – a term often used to describe ME, multiple sclerosis, lupus, Lyme disease and others – wherein a person is extremely ill but usually looks well. (Several times a week, a stranger notices my crutches and asks, “What’d you do to your leg?”)

Of course, some persons have disabilities that preclude sex entirely. Or, say, a person undergoing chemotherapy might want or need to avoid sex temporarily. It’s imperative that their wishes be met. No one with a disability should be pressured into sex when their body will not accommodate it. Nor should anyone treat them like a sub-species of human. If a person with a disability can’t have or doesn’t want sex, that doesn’t mean they don’t want or need love. That should be clear to all sentient adults.

Too often, the able-bodied seek examples of high-performing persons with disabilities. And many of us are high-performing, maintaining careers and active sex lives. But it’s hard. Harder than an able-bodied person can know. We’re held up as examples, though, as if to chide persons with other disabilities, “See? Look what you can do if you try!” And that’s unfair. Each person with a disability is navigating life as their body allows, inside and outside the bedroom.

Was sex easier for me when I was able-bodied? Unquestionably. Is it still fun for me now? Hell, yes. I’m grateful I can still romp. I’m particularly grateful when a partner understands my body.

In this way, at least, the disabled and the able-bodied might have more in common than they know.

source;http://www.miamiherald.com/

 

ways-to-ease-ankylosing-spondylitis-pain-03-pg-full

Amazing 9 Ways to Ease Ankylosing Spondylitis Pain

10 Ways to Ease Ankylosing Spondylitis Pain

If you’re living with ankylosing spondylitis, you know the back pain and fatigue that are hallmarks of the condition can be unpredictable. But fortunately, there are many approaches — besides simply relying on medications — that you can take to ease spondylitis pain and stiffness and move more freely. Most of these ideas are free or inexpensive, and even enjoyable to boot. You’ll find that the emotional boost you get from taking these steps can be as great as the physical improvement. Here are 10 ways to get started

 

Keep Moving

Keep Moving

Your number one defense against spondylitis pain and stiffness is to get moving. Rest and couch-potato inactivity allow your joints to start fusing together, which is what you need to avoid with ankylosing spondylitis. Ruth Kadanoff, MD, professor of rheumatology at the Loyola University Stritch School of Medicine in Chicago, says, “The type of movement is not as important as the frequency. You need to be doing some type of exercise twice a day. The best exercise is a low-impact type of exercise like walking.” Make simple exercise a daily habit, just like brushing your teeth, and you’ll be well on your way to relieving lower back pain.

 

Make Mornings More Manageable

Make Mornings More Manageable

If you’re like most people with ankylosing spondylitis, your lower back pain and stiffness is worse in the morning. “When joints are stationary for a time, the joint fluid actually thickens a bit, like ketchup,” says Sturdy McKee, MPT, physical therapist and CEO of San Francisco Sport and Spine Physical Therapy. “You can shake or stir your joints through repeated movements — any repeated movements.” Talk to your doctor or physical therapist to create a morning routine of gentle motions that can lessen spondylitis pain and get your joints moving.

 

 

Correct Poor Posture

Correct Poor Posture

Poor posture ramps up spondylitis pain and stiffness. Minimize lower back pain with what medical experts call “posture training:” Think tall by keeping your head balanced and your back straight at all times, and practice standing with your back against a wall and prone lying, which is lying face down on a firm surface. A physical therapist can show you the ropes. “Posture training should be done for about 30 minutes every day, but you can break this time up into 10- or 15-minute sessions,” says Angelo Papachristos, a physiotherapist at St. Michael’s Hospital in Toronto, Ontario, Canada

Get Physical (Therapy)

Get Physical (Therapy)

The next step after correcting your posture is to follow a more comprehensive physical therapy program for ankylosing spondylitis relief. “We now know that spondylitis also includes an increased risk for osteoporosis and heart disease. That means you can really benefit from a complete program that includes aerobic exercise, range of motion exercise, and strength training,” says Papchristos. Besides targeting lower back pain, bone health, and heart health, a physical therapy program may include deep breathing exercises to prevent your rib cage from stiffening.

 

Stretch Out in Bed

Stretch Out in Bed

Fatigue is common with ankylosing spondylitis, so you need to get a good night’s sleep. But unfortunately, sleep can also be a time when spondylitis pain and stiffness gets worse. “You spend most of your resting time in bed, so it is important to sleep as flat and straight as possible when you have ankylosing spondylitis. You also want your head and neck straight, so you should use a small pillow that does not flex your neck,” says Kadanoff. If you wake up stiff and sore, try starting your morning movement and stretching exercises while you’re still flat on your back in bed

 

Hit the Showers

Hit the Showers

When the fluids in your joints get thick and stiff, spondylitis pain gets worse. A great way to get those fluids moving is to warm them up with a warm bath or shower, which loosens up your muscles and makes it easier to exercise. In fact, you might find that doing some exercise in the shower can help get you going in the morning. You may also find that doing your posture training for ankylosing spondylitis after a warm bath or shower, when your body is warmed up, is easier for you.

 

 

Take to Water

Take to Water

Exercises that are good for lower back pain and spondylitis on land are usually even better in a pool. Swimming is a great low-impact aerobic exercise for ankylosing spondylitis. “Studies consistently show that water exercises are the best types of exercise for spondylitis pain and stiffness,” says Papachristos. A survey published in the Scandinavian Journal of Rheumatology illustrates this: Researchers found that the most common exercise for people with spondylitis is walking, but the most effective for relieving pain and the most enjoyable is exercising in a pool. Many gyms offer water exercise classes, or you can ask a doctor or physical therapist for suggestions of exercises to do in a pool.

Ditch the Extra Weight

Ditch the Extra Weight

If you need more motivation to take off a few pounds, know that you can reduce pain in your hips, knees, and lower back just by reaching a healthy weight. Being overweightputs pounds of extra strain on all your joints and can aggravate a joint that’s already inflamed. The Spondylitis Association of America recommends a balanced diet that includes lots of fruits, vegetables, and whole grains. You also want to avoid consuming too much cholesterol, sugar, salt, and the saturated fat found in animal products. Make these swaps, and the weight should come off more easily. Your doctor can also provide weight-loss guidance.

 

 

source;http://www.everydayhealth.com/

diet-for-ankylosing-spondylitis

Ankylosing Spondylitis; Best Diet For Patients For Alleviating Spine Pain And Stiffness

Diet For Ankylosing Spondylitis

The aim of the diet for ankylosing spondylitis is to alleviate the symptoms and arrest progression of the ailment. Although ankylosing spondylitis primarily affects the spine, in some cases this inflammatory disease may triggerinflammation in the eyes, lungs and heart. Ankylosing spondylitis patients are also susceptible to loss of appetite and fatigue. Hence, a healthy balanced diet that provides all types of nutrients in appropriate quantities is essential for controlling the inflammation and improving the quality of health of people suffering from ankylosing spondylitis.

As ankylosing spondylitis triggers pain in the hips and lower back, you should check your total calorie intake to prevent weight gain, which would worsen the pain by increasing pressure on the weight bearing joints of your body.

Here Is The Ideal Diet For People Suffering From Ankylosing Spondylitis:

Low Starch Diet

A number of physicians recommend a low starch diet to keep the symptoms of ankylosing spondylitis under control. Studies have linked ankylosing spondylitis to Klebsiella bacteria, a type of microbe present in bowel flora. As these bacteria feed on starch, health professionals recommend decreasing starch consumption to inhibit growth of the Klebsiella bacteria. A low starch diet can help in reducing the pain and stiffness of the spine. Hence, people suffering from ankylosing spondylitis should limit consumption of products that contain wheat, oat, rye, barley, corn flour, rice and potatoes and replace the starchy foods with non-starchy vegetables, fruits and healthy proteins and fats.

Low Starch diet

Oily Fish

Omega-3 fatty acids found in oily fish help in fighting this inflammatory disease. These healthy fats help in suppressing production of inflammatory chemicals that trigger the painful symptoms of the disease. Regular intake of omega-3 rich foods can also help in preventing the disease from worsening. Furthermore, oily fish is an excellent source of vitamin D. Ankylosing spondylitis patients are susceptible to vitamin D deficiency, which worsens their condition.

Fish

Milk

Ankylosing spondylitis patients need sufficient amount of calcium to maintain the optimal health of their bones. Milk is an excellent source of calcium. As people suffering from ankylosing spondylitis are susceptible to osteoporosis, they must consume two to three glasses of milk daily.

Milk (2)

Yogurt

Apart from being a source of calcium and healthy proteins, yogurt provides bacteria beneficial for the gut. To get rid of the debilitating pain, people suffering from ankylosing spondylitis often take non-steroidal anti-inflammatory drugs (NSAID) for a prolonged period, which tend to damage the lining of the intestines. The live culture in yogurt helps in preventing damage to the gut lining.

Yogurt

Citrus Fruits

People with ankylosing spondylitis should eat at least two portions of fruits daily including a citrus fruit. Citrus fruits are packed with vitamin C, which is essential for maintaining the connective tissues. Furthermore, vitamin C acts as an antioxidant and protects the joint tissues from oxidative stress.

Citrus Fruits

Vegetables

At least four portions of vegetables are recommended for people suffering from ankylosing spondylitis. However, as starchy vegetables and vegetables of the nightshade family such as tomato, eggplant and peppers may worsen the symptoms of ankylosing spondylitis, they should be excluded from the diet of ankylosing spondylitis patients. The ideal vegetables for ankylosing spondylitis diet are leafy green vegetables, carrots and pumpkin.

Vegetables

Mussels

Mussels contain proteoglycans, a type of protein that helps in nourishing the cartilage. When included in the ankylosing spondylitis diet, the proteoglycan rich foods help in preventing degradation of the spine.

Mussels

Bone Broth

Bone broth is an excellent source of collagen. Your body can easily absorb the bone collagen, which helps in strengthening the joints and can help in alleviating the symptoms of ankylosing spondylitis.

source;http://www.searchhomeremedy.com/