The Spoon Theory - What do Spoon's have to do with Being sick?

This is the Spoon Theory and it applies to everyone who has a chronic disease or an invisible illness. I so wish I could carry spoons around with me to help my family and friends understand what it is like to live with Ehlers-Danlos and all the other illnesses including Lupus that I deal with.
Feel free to share this video with your friends and family who may be having a hard time understanding with living your life is like.

5 Tools to Cope With Invisible Illness - Article by Lisa Copen and

No matter what invisible illness or invisible disabilities you are dealing with, or even if you are not dealing with an invisible illness but rather have a hard time moving forward when tough things happen or you feel discouraged, this is a GREAT article with good ideas to help you manage life.

I love getting advice like this because some days 

you just run out of what to do's.  

If you have an invisible illness or invisible disabilities then you already know what that is, but for those of you who do not have these here is a little information to help explain this. 

What are Invisible Ilness' and Disabilities?

Citation: Disabled World News - Information on invisible disabilities including a list of hidden disabilities with physical and mental impairments: http://www.disabled-world.com/disability/types/invisible/#ixzz2StFNsvlT  

     

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. 

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.  

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.

List of SOME disabilities considered invisible disabilities:

ADHD Anxiety disorders Allergies Arachnoiditis Asperger Syndrome Asthma Autism Bipolar disorder Brain injuries Charcot-Marie-Tooth disease Chronic fatigue syndrome Chronic pain Circadian rhythm sleep disorders Coeliac Disease Crohn's disease Depression Diabetes

Epilepsy Fibromyalgia Food allergies Fructose malabsorption Hereditary Fructose Intolerance Hyperhidrosis Hypoglycemia Inflammatory bowel disease Interstitial cystitis Irritable Bowel Syndrome Lactose Intolerance Lupus Lyme Disease

Major depression Metabolic syndrome Migraines Multiple Sclerosis Multiple Chemical Sensitivity Narcolepsy Personality disorders Primary immunodeficiency Psychiatric disabilities Reflex Sympathetic Dystrophy Repetitive stress injuries Rheumatoid arthritis Schizophrenia Scleroderma Sjögren's syndrome Temporomandibular joint disorder Transverse Myelitis Ulcerative Colitis.

Lisa Copen - Founder of National Invisible Chronic Illness Awareness Week and Rest Ministries 

Article from Huffington Post

http://www.huffingtonpost.com/lisa-copen/living-with-invisible-illness_b_937234.html

5 Tools to Cope With Invisible Illness

Posted: 09/12/11 12:09 PM ET

"You look so good! You can't be as bad as you say. You look perfectly healthy." "You think you have fatigue? Try working full time plus having four children! Then you'll know what chronic fatigue is." "I think you're spending too much time thinking about how you feel. You need to just get out more." "If you really wanted to get well, you'd at least try that juice drink I gave you last week. It won't hurt to try it."

And the remarks go on ... and on. And our heart aches.

You may be surprised to hear that nearly one in two Americans has a chronic illness or physical condition that affects their daily life.* The range of diseases include everything from back pain to fibromyalgia, arthritis to cancer and migraines to diabetes. Oftentimes, one of the largest emotional stumbling blocks for people who suffer from illness is the invisibility of the pain.

About 96 percent of illness is invisible. This means that the person who suffers from the chronic condition shows no outward signs of physical pain or disability, nor does he or she use an assistive device like a walker or wheelchair. But the incredible pain each day can be disabling within the confines of the home.

If you have an invisible illness here are five tools to help let go of some of the frustrations:

[1] Let go of expectations.

Surrendering over expectations of others may be a life-long process, but if you have high expectations you will consistently find that people will always disappoint you. No one is perfect, including you! Remember that you may not understand the difficulties that your friends are going through, whether it's a divorce, the death of a loved one, a loss job, an ill child, etc. Your illness is significant in your life. Even when people care, they still will have significant things going on in their own lives. When they don't meet your expectations it is rarely intentional.

[2] Find supportive friends.

Is there someone in your circle of friendship who is constantly belittling you or suspicious about your illness? Is he beyond listening and instead spreading gossip about how he saw you at the grocery last week and you looked perfectly fine? This should be a relationship to let go of. If it is someone like a relative that you will still see occasionally, distance yourself as much as possible. Illness can help us easily prioritize our friendships; that way we can spend our limited energies with those that mean the most to us.

[3] Search for the joy in your blessings.

Instead of dwelling on thinking about how badly you feel, find ways to bring more joy into your life, even if it's just appreciating the small things. Explore what makes you happy and what you are doing when your natural adrenaline seems to take over some of the fatigue, and you have extra energy. That's likely where your passions are!

Focus on bringing more of this into your life. And don't let your limitations stop you. For example, maybe you once loved to garden. Now you could grow a few potted flowers or hire a neighborhood teenager to plant some vegetables and set up an automatic sprinkler system for them. You could even start a garden consulting business. Think beyond what you once did, but find ways to replicate the things you love in new ways.

[4] Use your talents and skills for things you care about.

If you're no longer able to work because of your illness, you may feel like your skills are going to waste. Maybe you've always wanted to write children's books or be a business consultant. Find a place to plug in and do some volunteer or part-time work for to be able to use these skills in an area where you feel passionate. Instead of focusing on what others aren't providing you with that you want so much, follow your dreams and give that gift to yourself.

[5] Encourage someone else.

You personally know how hard it is to live with illness and to feel like no one understands. So take time to be vulnerable with someone else who is going through this. Whether you meet someone through an online group such as National Invisible Chronic Illness Awareness Week's message boards, or through your local support group, volunteer your time and expertise (yes, you're an expert on living with invisible illness!) and use it to make someone elses journey easier. You will find your own journey more enjoyable too.

None of us can change another person or make someone care, but we can educate and give gentle advice. We must also continue to work on ourselves. You'll find that even when you want to change it can be a real challenge, requiring discipline and motivation for a better life. You owe it to yourself to find joy despite your illness, and by focusing on how you can change your circumstances -- instead of change other people -- you'll be much more personally rewarded.

* "Chronic Care in America: A 21st Century Challenge," a study of the Robert Wood Johnson Foundation & Partnership for Solutions: Johns Hopkins University,

Lisa Copen is the founder of Rest Ministries for the chronically ill and National Invisible Chronic illness Awareness Week, held annually each September. She is the author of Why Can't I Make People Understand? Discovering the Validation Those With Chronic Illness Seek and Why. She has lived with rheumatoid arthritis and fibromyalgia since her early twenties, 18 years now.  

http://restministries.com/category/our-hightlights/founders-blog/

Did You Know That Your Fingernails Are Speaking To You?

Ehlers-Danlos patients are deficient in many vitamins and other levels such as Iron and Sodium. The lacking of these can be seen in the fingernails. This is a very interesting article that will have you checking your nails. Examining the Fingernails When Evaluating Presenting Symptoms in Elderly Patients Mark E. Williams, MD Nov 23, 2009 http://www.medscape.com/viewarticle/712251 Introduction Human fingernails, located on the dorsal aspect of the terminal 40% of the distal phalanx of each finger, are complex structures involving 3 different layers: The nail plate (the nail). This is the keratinized structure, which grows throughout life; The nail bed (ventral matrix, sterile matrix). This is the vascular bed that is responsible for nail growth and support. It lies protected between the lunula (the "half moon" seen through the nail) and the hyponychium (the posterior part of the nail bed epithelium); and The eponychium (cuticle). The epidermal layer between the proximal nail fold and the dorsal aspect of the nail plate. The primary purpose of the nail is protection. Abnormalities of the nail are often caused by skin disease and infection (most often fungal) but may also indicate more general medical conditions. This discussion does not address localized trauma or nail infections but offers examples of nail abnormalities that may occur with systemic disease. Check to see whether the nails are normal by looking at the following (Figure 1): Softness and flexibility of free edge; Shape and color; Quality of paronychial tissue; and Growth rate (about 6 months from cuticle to free edge). Time of events can be estimated from location. Figure 1. The normal nail. Examining the Nails Elderly people carry the last 6 months of their medical record on the approximately 10 square centimeters of keratin comprising the fingernails. Examining the fingernails can help the clinician detect a number of general and specific factors, including the following: Overall vitality; Inner emotional state; Cerebral dominance; Occupations and hobbies; Medical history; Nutritional status; Cardiovascular function; Rheumatic conditions; and Dermatologic problems. The patient's manicure can reveal state of health, nutritional status, past events, personality, occupation, and one's inner state. Systemic illness should show the nail changes in each of the nails on one hand. The thumb may reveal more extensive changes given its increased size. It is useful to follow the following sequence when examining the nails: Check the nail shape; Examine the nail color; Survey processes around the nails; Compare hands; and Note skin conditions. It is critical to examine the nails in adequate light. Gently rotate the nail in the light so that the reflection highlights all aspects of the nail. Notice the lunula, the pale crescent moonlike coloration at the base of the nail. Leukonychia stria and a pointed tent-like lunula suggest an excessive manicure and pushing on the cuticle. Paronychias suggest stress and poor attention to hygiene. This can reflect depression, dementia, or psychiatric illness. Nail Growth Nail growth is continuous. It takes about 6 months for a fingernail in an elderly person to completely grow out. Cold temperature can slow growth rates but not to any clinically significant degree (pun intended). The middle fingernail grows the fastest, followed by the forefinger and ring finger. Aging slows the growth rate from approximately 3 months in childhood to 6 months in 70-year-olds. Nails in elderly people are also thicker than in younger people. Thin nails in a postmenopausal woman raise the possibility of metabolic bone disease. The nails of the dominant hand grow slightly more quickly than the nondominant nails, probably because minor trauma accelerates nail growth. Conversely, immobility slows the growth rate of fingernails. Understanding the growth rate is important because the time interval from a critical event can be estimated from the location of a nail lesion. For example, a white line appearing transversely halfway up the nail suggests an acute illness 3 months earlier. Regular observation will demonstrate its progression to the end of the nail edge. Nail Polish Distance from base and line of polish gives an approximate date of application (nails grow 0.1 mm/day). Picking at polish reflects nervousness and agitation. Toenail polish suggests unusual flexibility or a friendly helper. Observing the Nail Shape and Surface Clubbed Fingernails Clubbing involves a softening of the nail bed with the loss of normal Lovibond angle between the nail bed and the fold, an increase in the nail fold convexity, and a thickening of the end of the finger so it resembles a drumstick. To determine whether nails are clubbed, have the patient place both forefinger nails together and look between them. If you can see a small diamond space between them (Schamroth's window) then the nails are not clubbed (Schamroth's sign) (Figure 2). Figure 2. Schamroth's sign. Causes of clubbing (not exhaustive) include the following (Figure 3): Pulmonary and cardiovascular causes (80%) Lung cancer, pulmonic abscess, interstitial pulmonary fibrosis, sarcoidosis, beryllium poisoning, pulmonary arteriovenous fistula, subacute bacterial endocarditis, infected arterial grafts, aortic aneurysm Gastrointestinal causes (about 5%) Inflammatory bowel disease, sprue, neoplasms (esophagus, liver, bowel) Hyperthyroidism (about 1%) Note: Chronic obstructive pulmonary disease does not cause clubbing. Figure 3. Example of clubbed fingernails. Koilonychia Koilonychia are spoon-shaped concave nails (Figures 4A, 4B). This occurs normally in children and usually resolves with aging. To determine whether a nail is spooned, perform the water drop test. Place a drop of water on the nail. If the drop does not slide off, then the nail is flattened from early spooning. An experienced clinician can look at the nail and perform a "mental" water drop test. Causes include the following: Iron deficiency; Diabetes mellitus; Protein deficiency, especially in sulfur-containing amino acids (cysteine or methionine); Exposure to petroleum-based solvents; Systemic lupus erythematosus; and Raynaud's disease. Figure 4A. Spooned nail. Figure 4B. Spooned nail. In 1846, Joseph Honoré Simon Beau described transverse lines in the substance of the nail as signs of previous acute illness. The lines look as if a little furrow had been plowed across the nail. Illnesses producing Beau's lines include the following: Severe infection; Myocardial infarction; Hypotension, shock; Hypocalcemia; and Surgery. Intermittent doses of immunosuppressive therapy or chemotherapy can also produce Beau's lines. Severe zinc deficiency has also been proposed as a cause of Beau's lines. By noting its location on the nail, the approximate date of the illness associated with it can be determined (Figures 5A, 5B). Moreover, the depth of the line provides a clue to the severity of the illness. Figure 5A. The location of Beau's lines halfway up the nail suggests illness 3 months ago. Figure 5B. Two Beau's lines suggest illnesses about 2 months apart. Thin Brittle Nails Thin, brittle nails can indicate the following (Figure 6): Metabolic bone disease (nail thinness is correlated with osteopenia); Thyroid disorder; Systemic amyloidosis (indicated by yellow waxy flaking); and Severe malnutrition. Figure 6. Note the thin nails in this woman with severe osteopenia. Onychorrhexis is the presence of longitudinal striations or ridges (Figure 7). It can simply be a sign of advanced age but it can also occur with the following: Rheumatoid arthritis; Peripheral vascular disease; Lichen planus; and Darier's disease (striations are red/white). Central ridges can be caused by: Iron deficiency; Folic acid deficiency; and Protein deficiency. Figure 7. Example of a central nail ridge. Central Nail Canal (Median Nail Dystrophy) When a central nail canal is present, the cuticle is usually normal (Figure 8A). Central nail canal is associated with: Severe arterial disease ("Heller's fir tree deformity" -- a central canal with a fir tree appearance -- may occur with peripheral artery disease (Figure 8B); Severe malnutrition; and Repetitive trauma. Figure 8A. Example of central nail canal. Figure 8B. Central nail canal with Heller's fir tree deformity. Nail Pitting Nail pitting -- small punctate depressions -- are caused by nail matrix inflammation, which can be the result of: Psoriasis (random appearance of pits) (Figure 9); Alopecia areata (geometric rippled grid) (Figure 10); Eczema; and Lichen planus. Figure 9. Indication of psoriasis. Figure 10. Indication of alopecia areata. Nail Beading With nail beading, the beads seem to drip down the nail like wax (Figure 11). It is associated with endocrine conditions, including the following: Diabetes mellitus; Thyroid disorders; Addison's disease; and Vitamin B deficiency. Figure 11. Nail beading. Rough Nail Surface When nails look sandpapered and dull, consider (Figure 12): Autoimmune disease; Psoriasis; Chemical exposure; and Lichen planus. Figure 12. Example of a rough nail surface. Nail Thickening Slow nail growth produces thickness (Figure 13). In such cases, the following should be considered: Onychomycosis; Chronic eczema; Peripheral vascular disease; Yellow nail syndrome; and Psoriasis. Figure 13. Example of a nail thickening. Onycholysis Onycholysis is distal separation of the nail plate from the underlying nail bed (Figure 14). It is associated with the following: Thyrotoxicosis; Psoriasis; Trauma; Contact dermatitis; Tetracycline; Eczema; Toxic exposures (solvents); Blistering from autoimmune disease; and Porphyria cutanea tarda (onycholysis and skin blistering from sun exposure). Figure 14. Traumatic onycholysis (involving only 1 nail). Severe Nail Curvature (Beaked Nails) Curved or beaked nails are caused by resorption of distal digit (Figure 15). Consider the following: Hyperparathyroidism Renal failure Psoriasis Systemic sclerosis Figure 15. Example of severe nail curvature. Complete Nail Destruction Complete local nail destruction can be caused by local mechanisms, including trauma and paronychia. Generalized conditions that might cause complete nail destruction include the following: Toxic epidermal necrolysis; Chemotherapy; Bullous diseases; and Vasculitis. Observing Nail Color Abnormalities of the Lunula If the lunula is absent, consider anemia or malnutrition (Figure 16). A pyramidal lunula might indicate excessive manicure or trauma (Figure 17). A pale blue lunula suggests diabetes mellitus. If the lunula has red discoloration, consider the following causes among others (Figure 18): Cardiovascular disease; Collagen vascular disease; and Hematologic Malignancy. Figure 16. Absent lunula. Figure 17. Pyramidal lunula. Figure 18. Lunula with red discoloration. Transverse White Lines (Mee's lines) Any acute illness can produce transverse milky white lines. In addition, they might be caused by heavy metal toxicity (classically arsenic) or chemotherapy. The time of event may be determined from the location of the lines on nail (Figure 19). Figure 19. Note the Mee's line approximately one-third of the way up the nail, suggesting a significant illness 2 months previously. Leukonychia Striae Leukonychia striae are white splotches caused by minor trauma to the nail matrix (Figure 20). The timing can be determined by the location of the splotches on the nail. Figure 20. Example of leukonychia striae. Note location of white splotches, which can indicate timing of the traumatic event. Longitudinal Brown Lines Longitudinal brown lines form because of increased melanin produced by nail matrix melanocytes (Figure 21). They are associated with: Addison's disease; Nevus at the nail base; Breast cancer; Melanoma (check for periungal pigmentation); and Trauma. Figure 21. Longitudinal brown lines. Splinter Hemorrhages Splinter hemorrhages are caused by hemorrhage of the distal capillary loop (Figure 22). Note the thickness of these areas. They are associated with the following: Subacute bacterial endocarditis; Systemic lupus erythematosus; Trichinosis; Pityriasis rubra pilaris; Psoriasis; and Renal failure. Figure 22. Splinter hemorrhages tend to be fat. Terry's Half and Half Nails With Terry's half and half nails, the proximal portion is white (edema and anemia) and the distal portion is dark. These nails imply either renal or liver disease (Figures 23A, 23B). Figure 23A. This example of Terry's half and half nails suggests liver disease (no brown lines). Figure 23B. Half and half nails imply renal disease when there is a brown band at the junction of the erythema and the free edge. Image courtesy of w Generalized Discolorations of the Nail Plate Nail discoloration is a useful method for identifying potential problems. White Nails White nails can be caused by anemia, edema, or vascular conditions (Figure 24). Consider the following: · Anemia; · Renal failure; · Cirrhosis; · Diabetes mellitus; · Chemotherapy; and · Hereditary (rare). Figure 24. Example of white nails. Pink or Red Nails With pink or red nail discoloration, the following should be considered (Figure 25): · Polycythemia (dark); · Systemic lupus erythematosus; · Carbon monoxide (cherry red); · Angioma; and · Malnutrition. Figure 25. Example of pink and red nails. Brown-Gray Nails Brown-gray nails may suggest the following (Figure 26): · Cardiovascular disease; · Diabetes mellitus; · Vitamin B12 deficiency; · Breast cancer; · Malignant melanoma; · Lichen planus; · Syphilis; and · Topical agents, including hair dyes, solvents for false nails, varnish, and formaldehyde (among many others) Figure 26. Example of brown-gray nails. Yellow Nails Yellow nails suggest the following (Figure 27): · Diabetes mellitus; · Amyloidosis; · Median/ulnar nerve injury; · Thermal injury; and · Jaundice. Consider yellow nail syndrome if a patient has lymphedema and bronchiectasis. Figure 27. Example of yellow nails. Image courtesy of www.dermnet.com Used with permission. Green or Black Nails Green or black nails indicate the following (Figure 28): · Topical preparations, including chlorophyll derivations, methyl green, and silver nitrate (among others); · Chronic Pseudomonas spp infection; and · Trauma. Figure 28. Example of black nails. ww.dermnet.com Used with permission. Processes Around the Nail Paronychial Inflammation Paronychia is associated with separation of the seal between the proximal nail fold and the nail plate that provides entry for bacteria and leads to a localized infection of the paronychial tissues of the hands (Figure 29). Symptoms may include inflammation, swelling, and/or scaling. Figure 29. Example chronic paronychial inflammation. Periungal Telangeictasia Periungal telangeictasia is caused by dilated capillary loops and results in atrophy of the cuticle (Figure 30). It is strongly associated with collagen vascular disease, including the following: Systemic lupus erythematosus; Dermatomyositis (especially with Gotton's papules over knuckles); and Scleroderma. Figure 30. Example of periungal telangeictasia. Image courtesy of www.dermnet.com Used with permission. Mucus Cyst A mucous or myxoid cyst is a collection of degenerative collagen that can cause swelling and ridging of the nail above the cyst, forming a "gutter" (Figure 31). Figure 31. Example of a mucus cyst. Cases The following are examples of patients in whom examining the fingernails may help identify their conditions. Slide 1. 78-year-old with multiple conditions. Slide 2. 84-year-old man with a painful ankle. Slide 3. 68-year-old man with esophageal cancer. Slide 4. 62-year-old woman with dermatomyositis. Acknowledgments The author would like to thank the University of Virginia GME Office for funding support; Jim Thomas, MD, of www.Dermnet.com for permission to use images from their extensive dermatologic atlas; and the internal medicine residents at the University of Virginia for pre-testing and their helpful feedback