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Just what is a invisible illness?

What are Invisible Disabilities?
Invisible Disability, or hidden disability, is an umbrella term that captures a whole spectrum of hidden disabilities or challenges that are primarily neurological in nature. Invisible disability, or hidden disability, are defined as disabilities that are not immediately apparent. Some people with visual or auditory disabilities who do not wear glasses or hearing aids, or discreet hearing aids, may not be obviously disabled. Some people who have vision loss may wear contacts. A sitting disability is another category of invisible impairments; sitting problems are usually caused by chronic back pain. Those with joint problems or chronic pain may not use mobility aids on some days, or at all. Although the disability creates a challenge for the person who has it, the reality of the disability can be difficult for others to recognize or acknowledge. Others may not understand the cause of the problem, if they cannot see evidence of it in a visible way.
People with some kinds of invisible disabilities, such as chronic pain or some kind of sleep disorder, are often accused of faking or imagining their disabilities. These symptoms can occur due to chronic illness, chronic pain, injury, birth disorders, etc. and are not always obvious to the onlooker.
Invisible Disabilities are certain kinds of disabilities that are not immediately apparent to others. It is estimated that 10% of people in the U.S. have a medical condition which could be considered a type of invisible disability.
Nearly one in two people in the U.S. has a chronic medical condition of one kind or another, but most of these people are not considered to be disabled, as their medical conditions do not impair their normal everyday activities. These people do not use an assistive device and most look and act perfectly healthy.
According to the Americans with Disabilities Act of 1990 (ADA) an individual with a disability is a person who: Has a physical or mental impairment that substantially limits one or more major life activities; has a record of such an impairment; or is regarded as having such an impairment.
About This Image: Woman with migraine sitting on a bed holding a white mug with her head resting on her hands and knees.
Generally seeing a person in a wheelchair, wearing a hearing aid, or carrying a white cane tells us a person may be disabled. But what about invisible disabilities that make daily living a bit more difficult for many people worldwide
Invisible disabilities can include chronic illnesses such as renal failure, diabetes, and sleep disorders if those diseases significantly impair normal activities of daily living.
For example there are people with visual or auditory impairments who do not wear hearing aids or eye glasses so they may not seem to be obviously impaired. Those with joint conditions or problems who suffer chronic pain may not use any type of mobility aids on good days, or ever.
Another example is Fibromyalgia which is now understood to be the most common cause of chronic musculoskeletal pain. Sources estimate between 3 and 26 million Americans suffer from this hidden condition.
Other Types of Invisible Disabilities
Chronic Pain: A variety of conditions may cause chronic pain. A few of those reasons may be back problems, bone disease, physical injuries, and any number of other reasons. Chronic pain may not be noticeable to people who do not understand the victims specific medical condition.
Chronic Fatigue: This type of disability refers to an individual who constantly feels tired. This can be extremely debilitating and affect every aspect of a persons every day life.
Mental Illness: There are many mental illnesses that do qualify for disability benefits. Some examples are depression, attention deficit disorder, schizophrenia, agoraphobia, and many others. These diseases can also be completely debilitating to the victim, and can make performing everyday tasks extremely difficult, if not impossible.
Chronic Dizziness: Often associated with problems of the inner ear, chronic dizziness can lead to impairment when walking, driving, working, sleeping, and other common tasks.
People with psychiatric disabilities make up a large segment of the invisibly-disabled population covered under the Americans with Disabilities Act of 1990.
Invisible disabilities can also include chronic illnesses such as renal failure, diabetes, and sleep disorders if those diseases significantly impair normal activities of daily living. If a medical condition does not impair normal activities, then it is not considered a disability.
96% of people with chronic medical conditions live with an illness that is invisible.
Many people living with a hidden physical disability or mental challenge are still able to be active in their hobbies, work and be active in sports. On the other hand, some struggle just to get through their day at work and some cannot work at all.

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When someone is changing right in front of your eyes !!!!!

When you have a loved one and you start to notice different behaviors such as if they are usually easy going, kind hearted, gentle, would never hurt you mentally and or physically, then in a fast amount of time they become angry, mean, temper tantrums, violent mentally, You cant put your finger on it but you know something is wrong, They normally were right on top of everything bills, what ever needed to be done and instead even items on a grocery list are not there, bills not getting paid, loosing important papers, loosing medications just picked up at the pharmacy.

When asking what’s going on, You receive a very defensive person, they may kick you out of the house, or their bedroom, they become isolated, I feel this is out of depression and fear of what is happening to them. They know something is not right, they may sleep more, drink more, have more pain specially in the head, emotional episodes that were confusing . Behavior that makes them not appropriate in public, They fight you on everything,

Finally they may if a strong person may come to you and cry, like a baby, admitting they need help, they don’t know what is wrong, but they are forgetting things, not just normal age type things, like where they are, where they are going, after you give directions you still end up at the wrong place, they learn to adapt and how to cover up what’s happening. But still defensive, they can become paranoid, pace the floor, urinate in their pants and can’t hold it anymore, accuse you of things out of paranoia.

Their eating habits may change, they may eat more or less, or in this situation eat more, hide food, keep it in their car or locked in their room. You ask, they don’t have any, a full box of donuts gone no one else had any, almost like they don’t realize there doing it and deny it.

Even if they trust you enough to ask for help, its very important to their self esteem you don’t put them down and let them know you will always be there with them and won’t leave them. But then the next day they can transfer money out of the bank, take your keys, anything to remain in control over there life that they so eagerly want to hold on to.

If you feel well maybe it’s just me, or a phase, but other family members say things like, is so and so ok? Why? He is looking like he’s not here with us at the table, like vacant. Or I saw this person sitting on a stool starring off into space and wasn’t really there. Or finding them doing odd things like falling asleep sitting straight up like they were awake but asleep, or watering the pavement saying they are watering the grass.

It could be numerous things, Dementia, Alzheimer’s, a Traumatic brain injury, stroke, TIA’s, personality disorder, medications, so you must offer support the biggest fear they have is being alone, so you must reassure them you can be trusted and are their for them no matter what, other wise they won’t tell the truth of what’s going on. Brain Atrophy and alcohol and or past alcohol can escalade these symptoms, Smoking pot can also escalate these symptoms specially if used along length of time.

So If you notice anything of these symptoms, Please with out putting someone down, or making them feel bad, Be there, be strong for them even if you cry in another room.

If you notice these changes and happens in a quick amount of time like 6 months, you need to get them into a Neurologist, get a MRI, have cognitive thinking testing, and if it a reputable place they will ask the loved ones what they have noticed because they will not indulge the information to the Dr out of fear of a diagnosis. You have to be the person who steps up and recognizes there is something wrong, you can’t still your head in the sand. The sooner for a diagnosis, sooner for treatment and some Brain issues can be reversed or slowed down. So it’s not a time to take lightly.

If a accurate diagnosis is made its important how you and your loved ones can find out what you can do to help this person to keep them at their best, if they are tired, let them sleep, if they can’t get something done, oh well, learn to make small things just that! But also helping your loved one is the best gift you can give them.

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Types of Weight Loss Procedures that can save your life.

Weight loss although has risks, can be a benefits including curing diabetes, lowering blood pressure, lowering cholesterol, easy joints and arthritis pain, digestive issues. Asthma and lung disease, sleep apnea, pre diabetes, Hepatic Steatosis, non alcohol related cirrhosis, PCOS for infertility, Joint disease, pseudotumor cerebri, uniary incontinense, venous stasis disease which causes swelling and varicose veins, Depression and mental illness, Quality of life. Longer life.
LAGB:
The Lap Band, adjustable Banding System. Placement of a flexible silicone band around the upper part of the stomach. the result is your not as hungry, feels fuller faster and eats less. there is a port left under the skin, so the Doctor can tighten the band or make it looser.

LRYGB, Laparoscopic Roux-en-Y gastric Bypass, t in involves the creation of a small capacity stomach pouch and a small outlet from the pouch directly into the small intestine, where nutrients are absorbed. The pouch will hold less then the previous stomach, can fee satisfied sooner, eats, Hormonal issues make a difference in your calories being burned.

LSG, Laparoscopic sleeve gastrectomy, This removes a large portion of the stomach, the remaining portion of the stomach is formed into a long tube that is unable to enlarge or balloon up with food. The restriction reduces the amount a person can eat and causes satiety with less food.

MGB, Mini-Gastric Bypass or loop Gastric Bypass is a laparoscopic gastric bypass the involves connecting a loop of the small intestine to a small stomach ouch, creating the same sense of satiety and reduced hunger This procedure tissue connection instead of two and can be performed out patient.

The Duodenal Switch, This procedure involves a more complex re-routing of the intestines, that results in reduced stomach capacity and reduced nutrient absorption, It is the most invasive of the procedures and has the most risks but it may still have a role as a revisional procedure of for people with severe diabetes and very high BM!.

Band with imbringcation, This procedure which adds an imbrication or surgical in -folding and tightening of the stomach, to the placement of any adjustable gastric band. this is also out patient procedure it may improve weight loss produce faster results over LAGB Alone.

The laparoscopic improvement allow surgeons to spend less time in operating room and usually can go home that day.

In order the Qualify you must have a approval from a bariatric surgeon, the surgery center, BMI over 55. No history of Pulmonary hypertension, anesthia approval, sleep apnea under control
If you are over 65 most likely you won’t qualify.
You may want to keep your decision to have bariatric surgery to your self, the last thing you need is others opinions, it just between you and your Dr. You can even go under another name in the hospital to protect your privacy, but if you want to share your decision, make sure its with positive people that will support you in your journey and help you in your recovery.

A fantastic Book to read which gives you the in’s and outs, pro’s and con’s to any Gastric surgery. It is called A Sasse Guide, Outpatient Weight loss surgery, Dr Sasse is a highly experienced and accomplished bariatric surgeon, author expert and featured speaker national in the field of Weight reduction, bariatric medicine, remission of diabetes and surgery.

I have met him personally and just felt comfortable with his knowledge, He has refused patients because they don’t qualify, which I think is good, instead of just making the money. His office staff is incredible, kind and not judgmental. You can order the book off Amazon.com
If you would like to contact his office for their information conferences or a consultation the phone number is 775-7999. He resides in Reno, NV

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The Bipolar Disorder We Don’t talke about.

August 29, 2016
According to Sexual Health Matters, hypersexuality is found among an estimated 25 to 80 percent of all bipolar patients experiencing mania. That’s not trivial or an insignificant number. There are approximately 5.7 million adult Americans, or about 2.6 percent of the U.S. population age 18 and older, who live with bipolar disorder.
With that statistic, we can presume millions of people likely live with it. This symptom can be one of the most destructive and devastating. Yet, many people don’t realize they have it or that it has a name. While the symptoms of bipolar disorder are highly characterized, there seems to be little discussion on this particular topic. Why is that?
With Suzy Favor Hamilton’s latest book ”Fast Girl: A Life Spent Running from Madness” out in bookstores across the country, there has been an increased amount of discussion regarding bipolar mania. More specifically, its focus on the symptom of hypersexuality.
She writes in her book, “Being bipolar means being insatiable. The high of the mania is never high enough. There is always a desire, a need, to push the high to the next level, in the same way a drug addict constantly requires more and stronger drugs. For a person with bipolar disorder, risky behavior can be the best drug of all.”
Related Stories
The Symptom of Bipolar Disorder We Don’t Talk About
14 Secrets of People Who’ve Experienced Hypersexuality
Robert Weiss, Founding Director of The Sexual Recovery Institute, Los Angeles and Director of Sexual Disorders Services at The Ranch Treatment Center explained in a piece on PsychCentral, “Sexual addiction or hypersexuality is defined as a dysfunctional preoccupation with sexual fantasy, often in combination with the obsessive pursuit of casual or non-intimate sex: pornography, compulsive masturbation, romantic intensity and objectified partner sex for a period of at least six months.”
Hypersexuality is, from my personal experience, an overwhelming compulsion and addiction to sex and sexual content. When I’m hypersexual, I get intense cravings for sex. It’s similar to the sort of “butterflies in your stomach” feeling when you fall in love. It’s an intense high that gives me a massive boost in self-confidence. The temptation to act out is so strong I can practically feel it on my skin and taste it on my tongue. The worst part about hypersexuality is I’m never satisfied. I have to actively resist what my body is essentially trying to do on autopilot. If I’m not careful, then I’ll do something I’ll regret.

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As a writer for them, I encourage you to look at bpHope Magazine for more insightful information on the topic. They are a fantastic resource when it comes to articles and expert advice on what the symptoms look like, as well as professional opinions from leading experts in bipolar disorder. With being happily married to a wonderful husband, this kind of symptom tends to get me in serious trouble. Last year, I had a terribly bad manic episode that lasted several months.
During that time, I lost complete control of myself and acted out sexually. The worst part was nothing was ever enough. I needed more and more. Nothing would satiate me. It took over my entire brain and wouldn’t let go until the mania finally died. Despite the fact that I fought fervently against my overwhelming urges, I still was constantly unable to stop myself from falling into temptation.
Now that the clouds have parted and the dust has settled, I can think clearly and work around the triggers that caused me to lose control. My husband and I educated ourselves thoroughly on hypersexuality and he has now forgiven me for my actions. Whereas I was and am still responsible for all actions I take, I understand now that my behavior was a symptom of an illness, a common symptom of bipolar mania. Armed with this information, he, my best friends and my healthcare professionals have all agreed on a strategic prevention plan to help minimize my triggers and prevent any future mistakes.
Related Stories
Why I Rarely Tell People I Have Bipolar Disorder
23 Things About Bipolar Disorder Nobody Talks About
Although I do feel guilty every day for what I did, I no longer feel ashamed of myself. What happened was a terrible mistake but I’ve learned considerable information from it. With knowledge comes power, and I’m trying every single day to bring that power back into my own hands. Hopefully, I’ll regain it fully one day.
Don’t be ashamed of your actions. Learn from them and grow. If you or someone you know is experiencing symptoms of hypersexuality, or any other symptoms of mania, then please contact your doctor.
Image via Thinkstock.
This post originally appeared on The Huffington Post.

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Nuerological conditions significantly increase someone to consider suicide.

People diagnosed with MS are twice as likely to commit suicide then the general population, with in 2 years post stroke the risk is also twice as high, ALS, Dementia and other neurological diseases. Some have a plan, some don’t, there is plenty of help out in the medical community, but getting the patient to admit they are depressed is the first hurdle, Then the Doctors want to medicate and medicate you until you are no longer you. Some of the Antidepressants actually cause you to want to commit suicide, I know from experience myself, a medication given to me called Savella made me want to commit suicide, but at least I could recognize something was wrong and I called my Doctor right away, only with the response of well we have a entire list to try so don’t get discouraged.

There are a few red flags, someone talking about suicide or actually attempting suicide but their is no real profile and sometimes asking questions to the patient doesn’t help because they think there fine or won’t admit their feeling suicidal. Family and friends should be specially concerned if there loved one has a neurological disorder. If a patient is depressed and suffering from anxiety they are even at a higher risk. If you add substance abuse or drug use and it increases even more.

When a patient starts a new prescription, this is usually the time to watch them closely, It may motivate them to do things they normally wouldn’t do. Doctors should not only treat the depression but understand the neurological disease the patient has. The two go together and the key is knowledge. This type of patient should be monitored by the Doctor more closely.

Isolation is a very big contributor to depression and suicidal tendency’s. Impulse control- neurological diseases can cause patients to loose their impulse control. This can also add to the risk factor of suicide. Frontal lobe dysfunction adds to the lack of impulse control. The Frontal lobe is considered to be the CEO of the brain.

Certain Hospitals and come up with Risk score assessment forms for different neurological conditions.

Getting the patient to see a trained psychiatrist that actually understands your disease, If your friend or loved one speaks of suicide bring them to the Emergency Room or call 911.

As family and friends it’s important to try to lead this patient to job, their dog, grandchildren-something to distract from the darkness they are living in. Stay close, try to get the patient out into socializing and out of the house. You need to recognize their frustrations, Don’t just say ” Don’t do that, You have so much to live for”. You must acknowledge their feelings and thoughts, make them your safe place to come to talk to about their feelings, that’s how you will know what’s really going on. Building trust with out judgement. Take the conversation of suicide seriously, encourage engagement, patients like myself feel like our lives have been taken away from us, we no longer serve a purpose but now are a burden, Help them get involved in organizations, support groups, non profits so they can feel good about them selves. Keep guns out of the house period. If a firearm is used the death rate is 85%, Pills, and cutting themselves are less likely to work.

Talk to the patient if guns are to be removed explaining it’s because they love you. Not as a punishment and if you feel the patient is in imminent danger, call 911.

Suicide has a stigma, that needs to be addressed, knowledge spread and shared. Below you find information on Suicide.

1-800-suicide or1-800-784-2433

suicidology.org 202-237-2280 This is the American Association that can help families that are dealing with a family member that committed suicide or someone who has survived suicide. there support programs are the following: suicidology.org/suicide-survivors/sos-directory.

American foundation for suicide prevention: afsp.org 1800-273-talk. 24 hour hotline with trained personal as well as books, forums, you can also get names of support groups in your area.

Suicide Awareness voices of education (SAVE) save.org,9529467998, they have booklets and other resources for survivors of suicide loss and a searchable data base for support groups.

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Phantom Pains

Although amputations are visible the phantom pains are not.  The exact cause of phantom pain is still unknown  but originates in the spinal cord and brain.  when a patient feels these pains, it can be seen in a MRI machine.    It is believed that it is a response from mixed signals from the brain.

When a amputation takes place, areas of the spinal cord and brain lose your input from the missing limb and adjust to this detachment in a unpredictable way.  It may send a message to your brain the pain is else where.   Because the sensory information is referred elsewhere-from a missing hand to a present cheek.  So when the cheek is touched its as the missing limb is present.  It is a version of tangled sensory wires.  Thus results in pain.

Phantom pain can be caused by damaged nerve endings, scar tissue at the site of amputation and the physical memory of pre-amputation pain.

Know your triggers, usually you can feel a tingle or some sensation before pain begins, Try to empty your bladder, don’t get constipated, drinking alcohol can add to the pain,  If you learn your triggers you may be able to stop them before they happen,  meditation, calming one self down can prevent the pain.  Number one trigger is Stress!  so if you can exercise, de stress, calm down, you may be able to find tricks by massaging the limb before bed to help prevent the pain or using a (tens) machine to the affected limb.

Treatments and drug

Acupuncture and Transcutaneous electrical nerve stimulation

(TENS), have been found to be effective treatment for those that don’t want to take oral medications.  Also more invasive options include injections or implanted devices .  This is usually a last resort.

Medications

Although no medications specifically for phantom pain exist, some drugs designed to treat other conditions have been helpful in relieving nerve pain.  Not every pain medication will work for every person’s pain.

Medications used in the treatment of phantom pain include:

  • Antidepressants. Tricyclic antidepressants may relieve the pain caused by damaged nerves. Examples include amitriptyline, nortriptyline (Pamelor) and tramadol (Conzip, Ultram).

    These drugs work by modifying chemical messengers that relay pain signals. Antidepressants may also help you sleep, which can make you feel better.

    Possible side effects include sleepiness, dry mouth, blurred vision, weight gain, and a decrease in sexual performance or desire.

  • Anticonvulsants. Epilepsy drugs — such as gabapentin (Gralise, Neurontin), pregabalin (Lyrica) and carbamazepine (Carbatrol, Epitol, Tegretol) — are often used to treat nerve pain. They work by quieting damaged nerves to slow or prevent uncontrolled pain signals.

    Side effects may include depression, anxiety, suicidal thoughts, irritability, and allergic reactions such as hives, fever and swelling.

  • Narcotics. Opioid medications, such as codeine and morphine, may be an option for some people. Taken in appropriate doses under your doctor’s direction, they may help control phantom pain
  • receotor antagonists. This class of anesthetics works by binding to the NMDA receptors on the brain’s nerve cells and blocking the activity of glutamate, a protein that plays a large role in relaying nerve signals.

    In studies, NMDA receptor antagonists ketamine and dextromethorphan were effective in relieving phantom pain. Side effects of ketamine include mild sedation, hallucinations or loss of consciousness. No side effects were reported from the use of dextromethorphan.

Noninvasive therapies

    • Nerve stimulation. In a procedure called transcutaneous electrical nerve stimulation (TENS), a device sends a weak electrical current via adhesive patches on the skin near the area of pain. This may interrupt or mask pain signals, preventing them from reaching your brain.

      Used properly, TENS is safe. To avoid an unintentional shock, don’t wear a TENS device in the shower or tub or turn it up too high.

    • Mirror box. This device contains mirrors that make it look like an amputated limb exists. The mirror box has two openings — one for the intact limb and one for the stump.

      The person then performs symmetrical exercises, while watching the intact limb move and imagining that he or she is actually observing the missing limb moving. Studies have found that this exercise may help relieve phantom pain.

    • Acupuncture. The National Institutes of Health has found that acupuncture can be an effective treatment for some types of chronic pain. In acupuncture, the practitioner inserts extremely fine, sterilized stainless steel needles into the skin at specific points on the body.

It’s thought that acupuncture stimulates your central nervous system to release the body’s natural pain-relieving endorphins. Acupuncture is generally considered safe when performed correctly.

Minimally invasive therapies

  • Injection. Sometimes injecting pain-killing medications — local anesthetics, steroids or both — into the stump can provide relief of phantom limb pain.
  • Spinal cord stimulation. Your doctor inserts tiny electrodes along your spinal cord. A small electrical current delivered to the spinal cord can sometimes relieve pain.
  • Nerve blocks. This method uses medications that interrupt pain messages between the brain and the site of the phantom pain.

Surgery

Surgery may be an option if other treatments haven’t helped. Surgical options include:

  • Brain stimulation. Deep brain stimulation and motor cortex stimulation are similar to spinal cord stimulation except that the current is delivered within the brain. A surgeon uses a magnetic resonance imaging (MRI) scan to position the electrodes correctly.

    Although the data are still limited, brain stimulation appears to be a promising option in selected individuals.

  • Stump revision or neurectomy. If phantom pain is triggered by nerve irritation in the stump, surgical resection or revision can sometimes be helpful. But cutting nerves also carries the risk of making the pain worse.

On the horizon

Newer approaches to relieve phantom pain include virtual reality goggles. The computer program for the goggles mirrors the person’s intact limb, so it looks like there’s been no amputation.

Along with this pain from amputation, a patient may experience grief of the loss of the limb amputated, also depression over the loss can be common,  Loss of activity, or ability to work, or function pre amputation.  So support from family and friends are a important part of the recovery of a amputee.

One patient told me the pain was so bad he wanted to cut his entire leg off or kill himself.   Life was not worth living.

 

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When you wake up every day disappointed about your illness, by Amani Omejer

When You Wake Up Disappointed About Your Illness Every Morning

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I’ve been awake since 3 a.m. I only went to bed at 12:30 a.m., so that definitely does not add up to enough sleep! This is a fairly normal occurrence for me, especially at the moment, and it’s so frustrating! I woke up because of the pain in my ribs and abdomen, and I couldn’t fall asleep because of it, too…

Waking up because of pain is the shittiest way to wake up and start the day… A friend recently fell off her bike and explained that she had been woken up the night before by the pain in her leg. She told me that it was such a horrible way to be woken up, and I explained that this is how I’m woken up most nights or mornings… And if I’m not waking up because of the pain, I feel pain as soon as I have woken up in the morning.

Waking up and being in pain straight away is beyond depressing and demoralizing, but I’d always pick this one over being woken up by the pain. Both options are so tough, lonely and exhausting, though. They also feel indescribable. Words somehow just don’t do being-in-constant-severe-pain justice at all.

For a while last year I noticed that I kept waking up in the morning hoping things might be different. This was more because of emotional stuff that was happening at the time, and for the months beforehand, but the experience was very similar to what I’m experiencing now, except at the moment I’m feeling this hope-for-difference because of the extreme pain I’m experiencing. Last year I was desperately struggling with grief and anxiety (as well as other chronic illness related things!). Each morning I would wake, hoping things would be different, and each morning I felt so sad, heartbrokenly disappointed, and desperately frustrated that it wasn’t… It was exactly the same over and over again, each day, every day, for ages!

cartoon drawing of girl in bed thinking please let me be well i promise i will look after myself

When I prolapsed two discs in my back in 2013, I remember having this same thing: Six months into being completely bed-bound, I was waking up every day with a heartbreaking hope for difference, and feeling completely crushed and exhausted every morning that it wasn’t. Every time I was still waking up to the same slog of navigating intense loneliness and the constant challenge of somehow getting what I needed each day when I could barely get out of bed.

Something eventually shifted, as something always does, but it wasn’t that the symptoms completely eased (the grief/angst still rear their head every day, and my back still gives me troubles), it was just that something else — something more intense — took over dominating my experience.

I was struggling with severe concussion earlier this year, which devastated me for about four months. It didn’t get better, it’s still very present every day (I discovered I have a brain injury!), but it’s just that this pain in my ribs/abdomen developed and took over as being the pain and symptom that was shouting the loudest… When my ribs/abdomen pain is raging, I don’t feel my severe joint pain (or much else) because I can’t — I’m buckled up, struggling to breathe or move beneath the agony. But when my ribs/abdomen pain reduces from a nine or 10 to a seven, I feel my joint pain again…

Ugh. Explaining exactly what is happening, and how many symptoms I’m navigating and have navigated for ages now, always leaves me feeling angry, frustrated, overwhelmed, exhausted, scared, helpless, and really f*cking heartbroken and sad…  Living with chronic illness is so, so, hard. So hard. I often can’t believe how much I’m dealing with, so I struggle to trust other people would be able to comprehend it, too.

Surely someone can’t have that many things going on and still be trying to exist?! Is that what my head says… I immediately know that isn’t true, but I often talk myself into feeling suicidal because I’m like, surely I can’t keep — and shouldn’t keep! — fighting when I’m experiencing all of this? Surely I should just want to give up and stop fighting to live…? I end up feeling embarrassed that I continue to fight despite my experience, that I haven’t just gotten the hint yet… I feel like an idiot that I’m still trying so hard to live when actually things are just so damn hard in this body of mine.

But that is all talk from my inner critic — it isn’t truth, it just feels like truth a lot. Life is difficult — it is beautiful but it is f*cking difficult, too. And we all have differing levels and types of difficulty that we experience, and in so, so, many ways, my life is nowhere near as hard as some peoples’ in the world.

I want to continue to reframe this hard time I give myself about something that is actually beautiful — the way I continue to fight despite everything I experience, and the way these experiences actually fuel my experience. It shapes my writing, my activism, the projects I begin… Friends often point out that it’s amazing how I create so much from an experience that actually could bring people to the floor and leave them there…

Our heads, our inner critics, find material for criticism in the most beautiful and inspiring parts of ourselves. The characteristics that actually need and deserve celebration become an area that I pound myself with criticism and comparison about.

But both, especially the latter, just blind us to our experience, our truth: what is actually happening and how we are dealing with it. We get blinded to the fact that we are brilliant. Living with chronic illness is like climbing Mt. Everest over and over again, every single day, except the territory always changes slightly. Nothing is predictable, and it’s really f*cking difficult.

Take time to spot the ways you deal with your experience thaGet help for someone else


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A request from your chronically ill friend: What I need when we talk about my sickness.

A request from your chronically ill friend: what I need when we talk about my sickness.

When I meet new people, I often struggle to explain what I need. This is it.

When I was 14, I woke up with a fat face.

I was sick with a fever higher than I had ever felt. My face felt like a sumo wrestler had crammed a cantaloupe into my ear.

My mom took me to the emergency room in the closest town to our family’s remote lake house in North Carolina. Receptionists shooed me in, nurses injected butt shots, and doctors gave me doe-eyed stares. They had no idea what was wrong with me.

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Photo via iStock.

This routine of waking up suddenly sick, with a fat face and a spiked fever, continued for years.

Finally, when I was 16, doctors handed me a diagnosis and a pill regimen and told me I might be sick forever.

I was young enough that my pediatric doctor called to give my mom the diagnosis over the phone. The most dramatic part happened before the diagnosis, though, when they told my mom that they had somehow lost my eight vials of blood (which had taken hours of sweat and tears and people holding me down to get). Otherwise, the phone call was short and I could hear the words through the phone my mom held up to her ear.

“I’m so sorry,” the pediatric doctor said to my mom. As if we knew anything about an autoimmune disorder called Sjögren’s syndrome, with hallmark symptoms of dry eyes and a dry mouth, and why we should possibly join the doctor in feeling sad.

Now, more than 10 years later, I’m living fairly well with this autoimmune disorder.

But still, when I meet new people, I struggle with how to explain what I need. Part of my introduction to new people has to include these words: “I’m sick.” And that’s not easy.

So hello, new friend. Here’s what I need you to try to understand when we talk about my life with a chronic illness:

1. I need you to let me have my green couch moments.

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After that first day at the hospital in North Carolina, they sent me home without answers and I slept on the green couch at my family’s lake house for days. I remember feeling sad, watching my cousins jump off the diving board at the end of the dock.

Photo via iStock.

But I mostly remember feeling sad about how my family looked at me. They all had the saddest eyes, like they knew something about my future that I couldn’t comprehend at the age of 14.

For some reason, I’ve continued to have a lot of different green couches over the years in various houses and apartments. Sometimes when my sickness takes over, I have to spend days — or weeks — recovering on my green couch. I need you to let me stay there to rest and wait for Netflix to ask me, “Are you still watching ‘Friends’?”

2. I need you to show up.

No one knows what tomorrow holds. But if my tomorrow puts me in the hospital, I need you to come. I need you to show up. Sure, you can bring me flowers, but I really just need you to be there at my bedside, hanging out.

In high school, when my hospital visits lasted for 12 or 14 days of sucking on lemons in the pediatric wing to trigger my salivary glands and going for walks wheeling my IV bag, I remember the friends who showed up. And I remember the friends who only came after my parents bribed them to sit with me for a couple hours so they could go home to shower.

People were afraid. I get it. I was afraid, too.

3. I need you to stop asking why doctors can’t fix me.

The autoimmune disorder that I have is chronic, meaning there isn’t a cure, just like many other people in the world with chronic illnesses. I know it’s confusing — you come down with a cough and you go to the doctor to get better.

For me, it’s not that simple. I take a couple of medications that help tackle my individual symptoms and improve my quality of life with pain management, but that’s it. That’s all doctors can do at this point.

Please stop asking why. Doctors don’t know. I don’t know.

4. I need you to try to see my invisible pain.

All those years when I woke up with a fat face were just my invisible illness trying to make a guest appearance for one episode. Mostly, my body suffers in ways that you can’t see.

Photo via iStock.

The more visible symptoms happen in cold weather when the blood rushes away from my hands and feet. This is when you watch in amazement because my white hands look like a dead person’s. I need you to know that the invisible pain hurts just as bad as the visible pain.

5. I need you to stop asking me how I feel today.

Some days, it’s a big deal to just get out of bed because my joints ache and after even 10 hours of sleep, I still feel like I have a hangover. My right foot and my back feel broken, and my dry eyes build a white film on my contacts that feels like I’m watching the world through a dirty fish bowl.

When you ask me how I feel today, the answer is complicated. The list of pain that’s both inflamed or subsided is longer than we need to hash out. And sometimes the answer to your questions makes me sad, grieving the loss of a dream of a pain-free life I think I deserve.

6. I need you to let me weep in my mom’s arms, even as a grown adult.

Next month, I turn 27. Recently, I wept in my mom’s arms in a shaking way that startled even me. It was the day I got another doctor’s bill for hundreds that I couldn’t afford, and I wasn’t sure if I could even go to my specialist appointment because it might mean I couldn’t pay rent or buy groceries for a couple of months.

My health insurance doesn’t get it. They cover so little, deeming appointments and blood work as “medically unnecessary.” But truthfully, nothing about this sick life is easy to handle, even as a pretty independent adult. I need you to let me weep from the deepest places and not tell me to just shake it off.

7. I need you to stop telling me I can’t.

I told my parents I wanted to go on a mission trip to Africa. Instantly, they said, “You can’t.”

I’ve heard these words before, about studying abroad or becoming an elementary school teacher, with planes and buildings and countries with germs lurking behind every corner. Their advice comes from places of love. But I can’t have you joining in on this whole “You can’t” chant.

Until a doctor gives a definite “No, you can’t do that or go there,” then I need you to invite me to go places. I need you to challenge me and dream with me.

8. I need you to let me be stubborn.

I have a cousin who’s searching for a diagnosis for something autoimmune right now. My biggest prayer for her is that she stays stubborn, even after she knows she’s sick. She studied abroad before she got sick, before anyone tried to tell her she can’t.

The last couple of years, I moved to a new time zone, even when some told me I couldn’t. You might get to know me now and want to protect me in a plastic bubble everywhere we go. Please don’t. If you’re planning a trip somewhere exotic, invite me. I’ll tell you if it’s too much.

Photo via iStock.

Let me wrestle in the dark with my own stubbornness, just like when I was a little girl and insisted on riding my new bike with shiny tassels on the very first night, even though it was too big and pitch dark outside. I might fall down and get hurt, but I promise you I’ll learn from stubbornly ditching the training wheels in the dark.

9. I need you to tell me to stop staring at that hospital waiting in the sky.

I live in Dallas with a clear view to Baylor hospital in the skyline. Sometimes, while I’ve sat by the pool at my apartment, I’ve caught myself staring for too long at the hospital waiting in the sky for my future arrival.

You might be familiar with how we tell the “sick narrative”: sick, sicker, dying, gone. I have a higher risk of lymphoma and other complications, but this doesn’t mean that’s definitely how my story will end.

So if you catch me anxiously staring at my scripted future, stop me. I need you to remind me that the story can twist in so many directions, especially with technology and modern medicine that completely shatter traditional death sentences.

10. I need you to let me change the world today. Now.

The best (and worst) part about being sick: It moves me into action. I don’t have time to wait. I probably quit jobs sooner than you would or chase after dreams in frantic ways while you put yours on the back burner. I also don’t have time to waste.

It’s scary and exciting all wrapped into one. I need you to help me figure out how little me plays a part in this big story. Let me fight for things that matter today because tomorrow is just a gift.

11. I need you to love me like the 80-year-old grandma I am.

I’ve finally found a pill box that fits all the vitamins and medications that I need to sort out for designated times each day. My dream night is one cozied up and warm on the couch, followed by a 9:30 bedtime. Sjögren’s means I don’t produce enough tears, but if I did, I would cry while laughing at how many times I have to go to the bathroom because of all the water I have to drink to stay hydrated.

Yes, me and your 80-year-old grandma probably have more in common than you and I do. I’ve completely accepted this fact. Especially since I’ve been 80 since I was 16.

So love me like a grandma! Stop inviting me out to all-nighters and saying it’s so funny how I go to bed early and love warm socks. It’s not funny or cute. It’s who I am.

My autoimmune disorder is in no way categorized as “the worst.”

Believe me, people suffer every day with far worse, much more incurable diseases than mine. Some days, my illness feels mostly annoying, like an accessory I carry around and must remember to bring with me when I leave the house.

But I hope you will one day meet one of my best friends, a woman who has learned to love me and my sickness. She remembers little details, like how I lack the saliva required to eat dry pretzels filled with dry peanut butter. She figures out how to eat each pretzel with a huge swig of water so I won’t choke, and she does it with me, too. Together, we laugh.

She sits with me on the green couch for Netflix marathons when I’m sick. And together, we cry.

That’s what I want, what I need, and what I want you to know about me, friend: We all have our stuff, and this is mine.

I thought Ashley’s story was exactly what we all wish we could say to family and friends,  I wanted to state a few extra things I would like to add to this article.

Stop telling me to stop trying to find a cure!  I am not going to just take this laying down.  I need to research for my own sanity, start a support group, start a blog, to keep me busy and active with my brain.

Stop telling me a new treatment you heard of from a friend of a friend that you know will cure me.  Including coffee enemas.  or some crazy diet or pyramid business that supplements will cure me.

Stop telling me to stop Gluten, been there done that.

Stop judging how I should feel on certain days because it may interrupt our plans.

Stop saying you will help out when needed and never come by.

Stop telling me to not  be sad, or depressed with my diagnosis.  Some days, I just can’t be positive.

Kelly Helsel

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What you can do to Strengthen your Vegus Nerve

Vegus Nerve
6 Ways to Instantly Stimulate Your Vagus Nerve to Relieve Inflammation, Depression, Migraines And More
September 1, 2016 6 Ways to Instantly Stimulate Your Vagus Nerve to Relieve Inflammation, Depression, Migraines And More2016-09-01T15:38:10+00:00 – Health – No Comment
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This post first appeared on Darou Wellness. Go check out their amazingly informative blog about all things health related with advice from some of the leading Naturopathic Doctors in North America.

I read an article yesterday that has me extremely excited about the implications. The article is called “Hacking the Nervous System” by Gaia Vince (http://mosaicscience.com/story/hacking-nervous-system). In the article, the author describes the experience of a woman who suffered from severe, debilitating rheumatoid arthritis and her eventual treatment with a device which minimized inflammation by simply stimulating the vagus nerve. What this means, is that by activating the vagus nerve which works through the parasympathetic nervous system, we can greatly influence inflammation and the immune system. The role of the brain on body inflammation can be profound. If you suffer from digestive complaints, high blood pressure, depression or any inflammatory condition, please read on. Let me explain the possible implications step by step.

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What is the vagus nerve?

First of all, the vagus nerve is the longest nerve in the body which originates in the brain as cranial nerve ten, travels down the from go the neck and then passes around the digestive system, liver, spleen, pancreas, heart and lungs. This nerve is a major player in the parasympathetic nervous system, which is the ‘rest and digest’ part (opposite to the sympathetic nervous system which is ‘fight of flight’).

To find out ways to strengthen your Vegus nerve fo to the following link http://www.healthylifeisbetter.com/6-ways-to-instantly-stimulate-your-vagus-nerve-to-relieve-inflammation-depression-migraines-and-more/

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