NbN's blog: "My Illnesses"

Just a quick note to say such a HUGE THANK YOU to all my friends and family that have been keeping me shit-faced, rating my pictures and keeping my account going.  Although my ranking dropped some, it certainly didn’t much thanks to some very awesome friends.  I thank you from the bottom of my heart.

 

I am still unable to come back due to health issues although I shall be back soon.  I have autos and bombs that I need to run and then assess what to do with my account.

 

For those who were looking and noticed, yes, My NSFW pics are ALL deleted and most of my individual pics as well.  After the debaucle of having my pics posted on an adult website, they were posted to CraigsList last week with some very crude offering of myself, so apparently, pictures of me need to be very scarce.  I’ve deleted all my profiles from websites except a couple now and shall begin the never-ending work of trying to remove personal info from the internet.  It’s amazing how much is out there.  The NSFW’s will never come back.  Some pics of me will come back copyrighted.  I’m sorry---I hate to do that, but I don’t even know who played this cruel joke on me—not just posting pics but giving out my legal first name and cell phone number==interesting week indeed.  Most people on here don’t even know my nickname, must less my legal first name….so this was personal and meant to hurt and they accomplished that goal.  Especially with as little as I’m on, the pics are better protected anyway and maybe one day when I feel better the general pictures of me may return.

 

I apologize if this displeases anyone, but I think anyone putting themselves in that same position could understand why I have made this decision….so please bear with me as I try to get healthy enough to get back on here and run out my autos and the bombs I need to return, and from there I’m not sure where I’m heading.

 

But I OWE a HUGE thank you and hugs to so many great friends that have been there for me through while I was gone from Fubar an the closer ones even that were there for me personally dealing with some difficult issues…so I intend to be back soon and do what I need to do with those items and go from there.  Thank you again to the friends---and you know exactly who you are---great people who do Fubar much justice and give the word Friend it’s true meaning.  Thank you from the bottom of my heart.

This is a link to the actual story because copyright requires you not to copy and paste it...but directs to the site. It is so worth reading if you have yourself, a friend, family member, co-workers that suffers from what are often called silent diseases. As with both of mine, I can often mask the symptoms, so since I don't look sick, it is very difficult for people to understand why I may not feel like going out shopping that day or some other planned activity.....Please read---not only is it informative but insightful as well. It not only covers some of my illnesses, but lupus and many other illnesses that come to mind if you think of your friends and how most of the time, they are able to hide that illness and then they start losing spoons--you'll understand if you read the story. http://www.butyoudontlooksick.com/the_spoon_theory/

I think most people have heard of this illness--much more common...but here is some information on it as well: What is fibromyalgia? Fibromyalgia (FM) is a chronic pain disorder characterized by widespread musculoskeletal aches, pain and stiffness, soft tissue tenderness, general fatigue, and sleep disturbances. The most common sites of pain include the neck, back, shoulders, pelvic girdle, and hands, but any body part can be affected. Fibromyalgia patients experience a range of symptoms of varying intensities that wax and wane over time. Who is Affected? Fibromyalgia affects an estimated 10 million people in the U.S. While it is most prevalent in women, it also occurs in men and children of all ethnic groups. Because of its debilitating nature, fibromyalgia has a serious impact on patients' families, friends, and employers, as well as society at large. What are the Symptoms? FM is characterized by the presence of multiple tender points and a constellation of symptoms. * Pain The pain of FM is profound, widespread and chronic. It knows no boundaries, migrating to all parts of the body and varying in intensity. FM pain has been described as stabbing and shooting pain and deep muscular aching, throbbing, and twitching. Neurological complaints such as numbness, tingling, and burning are often present and add to the discomfort of the patient. The severity of the pain and stiffness is often worse in the morning. Aggravating factors that affect pain include cold/humid weather, non-restorative sleep, physical and mental fatigue, excessive physical activity, physical inactivity, anxiety and stress. * Fatigue In today's world many people complain of fatigue; however, the fatigue of FM is much more than being tired. It is an all-encompassing exhaustion that interferes with even the simplest daily activities. It feels like every drop of energy has been drained from the body, which at times can leave the patient with a limited ability to function both mentally and physically. * Sleep problems Many fibromyalgia patients have an associated sleep disorder that prevents them from getting deep, restful, restorative sleep. Medical researchers have documented specific and distinctive abnormalities in the Stage 4 deep sleep of FM patients. During sleep, individuals with FM are constantly interrupted by bursts of awake-like brain activity, limiting the amount of time they spend in deep sleep. * Other symptoms Additional symptoms may include: irritable bowel and bladder, headaches and migraines, restless legs syndrome (periodic limb movement disorder), impaired memory and concentration, skin sensitivities and rashes, dry eyes and mouth, anxiety, depression, ringing in the ears, dizziness, vision problems, Raynaud's Syndrome, neurological symptoms, and impaired coordination. How is it diagnosed? Currently there are no laboratory tests available for diagnosing fibromyalgia. Doctors must rely on patient histories, self-reported symptoms, a physical examination and an accurate manual tender point examination. This exam is based on the standardized American College of Rheumatology (ACR) criteria. Proper implementation of the exam determines the presence of multiple tender points at characteristic locations. It is estimated that it takes an average of five years for an FM patient to get an accurate diagnosis. Many doctors are still not adequately informed or educated about FM. Laboratory tests often prove negative and many FM symptoms overlap with those of other conditions, thus leading to extensive investigative costs and frustration for both the doctor and patient. Another essential point that must be considered is that the presence of other diseases, such as rheumatoid arthritis or lupus, does not rule out an FM diagnosis. Fibromyalgia is not a diagnosis of exclusion and must be diagnosed by its own characteristic features. To receive a diagnosis of FM, the patient must meet the following diagnostic criteria: * Widespread pain in all four quadrants of the body for a minimum duration of three months * Tenderness or pain in at least 11 of the 18 specified tender points when pressure is applied. What Causes fibromyalgia? While the underlying cause or causes of FM still remain a mystery, new research findings continue to bring us closer to understanding the basic mechanisms of fibromyalgia. Most researchers agree that FM is a disorder of central processing with neuroendocrine/neurotransmitter dysregulation. The FM patient experiences pain amplification due to abnormal sensory processing in the central nervous system. An increasing number of scientific studies now show multiple physiological abnormalities in the FM patient, including: increased levels of substance P in the spinal cord, low levels of blood flow to the thalamus region of the brain, HPA axis hypofunction, low levels of serotonin and tryptophan and abnormalities in cytokine function. Recent studies show that genetic factors may predispose individuals to a genetic susceptibility to FM. For some, the onset of FM is slow; however, in a large percentage of patients the onset is triggered by an illness or injury that causes trauma to the body. These events may act to incite an undetected physiological problem already present. Exciting new research has also begun in the areas of brain imaging and neurosurgery. Ongoing research will test the hypothesis that FM is caused by an interpretative defect in the central nervous system that brings about abnormal pain perception. Medical researchers have just begun to untangle the truths about this life-altering disease. How is Fibromyalgia Treated? One of the most important factors in improving the symptoms of FM is for the patient to recognize the need for lifestyle adaptation. Most people are resistant to change because it implies adjustment, discomfort and effort. However, in the case of FM, change can bring about recognizable improvement in function and quality of life. Becoming educated about FM gives the patient more potential for improvement. An empathetic physician who is knowledgeable about the diagnosis and treatment of FM and who will listen to and work with the patient is an important component of treatment. It may be a family practitioner, an internist, or a specialist (rheumatologist or neurologist, for example). Conventional medical intervention may be only part of a potential treatment program. Alternative treatments, nutrition, relaxation techniques, and exercise play an important role in FM treatment as well. Each patient should, with the input of a healthcare practitioner, establish a multifaceted and individualized approach that works for them. * Pain management Over-the-counter pain medications, such as acetaminophen or ibuprofen, may be helpful in relieving pain. The physician may decide to prescribe one of the newer non-narcotic pain relievers (e.g. tramadol) or low doses of antidepressants (e.g. tricyclic antidepressants, serotonin reuptake inhibitors) or benzodiazepines. Patients must remember that antidepressants are "serotonin builders" and can be prescribed at low levels to help improve sleep and relieve pain. If the patient is experiencing depression, higher levels of these or other medications may need to be prescribed. Lidocaine injections into the patient's tender points also work well on localized areas of pain. An important aspect of pain management is a regular program of gentle exercise and stretching, which helps maintain muscle tone and reduces pain and stiffness. * Sleep management Improved sleep can be obtained by implementing a healthy sleep regimen. This includes going to bed and getting up at the same time every day; making sure that the sleeping environment is conducive to sleep (i.e. quiet, free from distractions, a comfortable room temperature, a supportive bed); avoiding caffeine, sugar, and alcohol before bed; doing some type of light exercise during the day; avoiding eating immediately before bedtime; and practicing relaxation exercises as you fall to sleep. When necessary, there are new sleep medications that can be prescribed, some of which can be especially helpful if the patient's sleep is disturbed by restless legs or periodic limb movement disorder. * Psychological support Learning to live with a chronic illness often challenges an individual emotionally. The FM patient needs to develop a program that provides emotional support and increases communication with family and friends. Many communities throughout the United States and abroad have organized fibromyalgia support groups. These groups often provide important information and have guest speakers who discuss subjects of particular interest to the FM patient. Counseling sessions with a trained professional may help improve communication and understanding about the illness and help to build healthier relationships within the patient's family. * Other treatments Complementary therapies can be very beneficial. These include: physical therapy, therapeutic massage, myofascial release therapy, water therapy, light aerobics, acupressure, application of heat or cold, acupuncture, yoga, relaxation exercises, breathing techniques, aromatherapy, cognitive therapy, biofeedback, herbs, nutritional supplements, and osteopathic or chiropractic manipulation. The above information was copied from the National Fibromyalgia website: http://www.fmaware.org/site/PageServer?pagename=fibromyalgia

Treatments for Myasthenia Gravis (MG) There is no known cure for MG, but there are effective treatments that allow many-but not all-people with MG to lead full lives. Common treatments include medications, thymectomy and plasmapheresis. Spontaneous improvement and even remission may occur without specific therapy. Medications are most frequently used in treatment. Anticholinesterase agents (e.g., Mestinon®) allow acetylcholine to remain at the neuromuscular junction longer than usual so that more receptor sites can be activated. Corticosteroids (e.g., prednisone) and immunosuppressant agents (e.g., Imuran®) may be used to suppress the abnormal action of the immune system that occurs in MG. Intravenous immunoglobulins (IVIg) are sometimes used to affect the function or production of the abnormal antibodies also. Thymectomy (surgical removal of the thymus gland) is another treatment used in some patients. The thymus gland lies behind the breastbone and is an important part of the immune system. When there is a tumor of the thymus gland (in 10-15% of patients with MG), it is always removed because of the risk of malignancy. Thymectomy frequently lessens the severity of the MG weakness after some months. In some people, the weakness may completely disappear. This is called a remission. The degree to which the thymectomy helps varies with each patient. Plasmapheresis, or plasma exchange, may be useful in the treatment of MG also. This procedure removes the abnormal antibodies from the plasma of the blood. The improvement in muscle strength may be striking, but is usually short-lived, since production of the abnormal antibodies continues. When plasmapheresis is used, it may require repeated exchanges. Plasma exchange may be especially useful during severe MG weakness or prior to surgery. Treatment decisions are based on knowledge of the natural history of MG in each patient and the predicted response to a specific form of therapy. Treatment goals are individualized according to the severity of the MG weakness, the patient's age and sex, and the degree of impairment. What is the prognosis for those with MG? The current treatments for MG are sufficiently effective that the outlook for most patients is bright. Although the treatments will not cure MG, most patients will have significant improvement in their muscle weakness. In some cases, MG may go into remission for a time, during which no treatment is necessary. There is much that can be done, but still much to understand. New drugs to improve treatments are needed. Research plays an important role in finding new answers and treatments for MG. This information copied from the MGFA website: http://www.myasthenia.org/amg_treatments.cfm

What is Myasthenia Gravis (MG)? Myasthenia Gravis comes from the Greek and Latin words meaning "grave muscular weakness." The most common form of MG is a chronic autoimmune neuromuscular disorder that is characterized by fluctuating weakness of the voluntary muscle groups. The prevalence of MG in the United States is estimated to be about 20/100,000 population. However, MG is probably under diagnosed and the prevalence may be higher. Myasthenia Gravis occurs in all races, both genders, and at any age. MG is not thought to be directly inherited nor is it contagious. It does occasionally occur in more than one member of the same family. The voluntary muscles of the entire body are controlled by nerve impulses that arise in the brain. These nerve impulses travel down the nerves to the place where the nerves meet the muscle fibers. Nerve fibers do not actually connect with muscle fibers. There is a space between the nerve ending and muscle fiber; this space is called the neuromuscular junction. When the nerve impulse originating in the brain arrives at the nerve ending, it releases a chemical called acetylcholine. Acetylcholine travels across the space to the muscle fiber side of the neuromuscular junction where it attaches to many receptor sites. The muscle contracts when enough of the receptor sites have been activated by the acetylcholine. In MG, there is as much as an 80% reduction in the number of these receptor sites. The reduction in the number of receptor sites is caused by an antibody that destroys or blocks the receptor site. Antibodies are proteins that play an important role in the immune system. They are normally directed at foreign proteins called antigens that attack the body. Such foreign proteins include bacteria and viruses. Antibodies help the body to protect itself from these foreign proteins. For reasons not well understood, the immune system of the person with MG makes antibodies against the receptor sites of the neuromuscular junction. Abnormal antibodies can be measured in the blood of many people with MG. The antibodies destroy the receptor sites more rapidly than the body can replace them. Muscle weakness occurs when acetylcholine cannot activate enough receptor sites at the neuromuscular junction. Common symptoms can include: * A drooping eyelid * Blurred or double vision * Slurred speech * Difficulty chewing and swallowing * Weakness in the arms and legs * Chronic muscle fatigue * Difficulty breathing Information copied from the MGFA website: http://www.myasthenia.org/amg_whatismg.cfm

Symptoms/Diagnosis What is myasthenia gravis and what are common symptoms? Myasthenia gravis (MG) is an autoimmune neuromuscular disorder that affects voluntary muscles. Common symptoms can include a drooping eyelid, blurred or double vision, slurred speech, difficulty chewing and swallowing, weakness in the arms and legs, chronic muscle fatigue and difficulty breathing. The weakness tends to increase with continued activity and can be improved with periods of rest. Not everyone will display all symptoms, and symptoms can fluctuate. I think I have MG. What do I do? We can provide you with general information regarding MG, but you should consult with your doctor if you think you have MG. How does the doctor test for MG? A diagnosis can be confirmed in several ways, including the following: * Acetylcholine Receptor Antibody testing - Approximately 85% of MG patients have this antibody and, when detected, is a guaranteed diagnosis. * Anti-MuSK Antibody testing - For the remaining 15% of seronegative (SN) MG patients, those who have tested negative for the acetylcholine antibody, 40-70% test positive for the anti-MuSK antibody. The remaining patients have an unidentified antibody causing their MG. * Other tests - Tensilon® test, Repetitive Nerve Stimulation to check for a post-synaptic defect, Single Fiber EMG, or a muscle biopsy to look for antibodies may also be used. (from Summer 2006 newsletter article by K. Sivakumar, MD) Medications/Treatment How is MG treated? The goal of MG treatment is to remove antibodies, reduce antibodies, and inhibit the binding of antibodies through the various medications and treatments available. (from Summer 2006 newsletter article by K. Sivakumar, MD) There is no known cure for MG, but there are effective treatments that allow many people with MG to lead full lives. Common treatments include medications such as Mestinon® (pyridostigmine), prednisone, Cellcept® (mycophenolate mofetil), Imuran® (azathioprine), cyclosporine, and treatments such as thymectomy, plasmapheresis, and intravenous immunoglobulin (IvIg) infusions. Spontaneous improvement and even remission may occur without specific therapy. Rest and a well-balanced diet can help. Are there medications a patient with MG should not take? There are certain drugs that patients with MG should avoid or only use with caution. You should always discuss these concerns with your doctor or neurologist; make sure these professionals knows every drug you are taking, including ove-the-counter medications. You pharmacist may be another good resource. For more information on drugs MG patients should avoid or only use with caution you can see the following links: “Medication Information Card”, “Medications and Myasthenia Gravis”. The following link is from an MG organization which is not part of our foundation, but you may find the information useful: “Drugs Which May Aggravate MG”. Why aren’t my medications working? We can provide you with general information about medications you may be taking and on various treatments that are often used to treat MG, but for specific medical questions, you will need to talk to your neurologist. Will my MG go away? In some cases, MG may go into remission for a time, during which no treatment is necessary. Is it safe to switch to generic Mestinon® (pyridostigmine)? The generic form of Mestinon® has been on the market since February 2003, and to our knowledge no studies have been conducted as to the relative effectiveness of the medication in relation to the brand version. By law, the generic medications must have the same active ingredients as the brand name medication; however, the “fillers” or excipients may differ. Can people with MG receive the flu shot? Medical decisions should always be discussed with your doctor. As the flu shot is not a live vaccine, it is not strictly forbidden for people with MG; however, there may be some instances in which the vaccine is not advised. Causes How did I get MG? Often, the cause of MG contraction is not known for the particular patient. It is possible to contract MG from Penicillamine, which is used to treat Wilson’s disease, rheumatoid arthritis, other chronic autoimmune diseases, and cystinuria. It is also possible to contract MG by being treated with interferon alpha, or through a bone marrow transplant. (From “Medication and Myasthenia Gravis”). Is MG hereditary? Researchers are uncertain of the cause of MG, but do not believe that it is hereditary. A genetic predisposition to autoimmune diseases can run in families, but MG is not thought to be directly hereditary. Is MG contagious? Researchers are uncertain of the cause of MG, but do not believe that it is contagious. General Facts How many people have MG? Approximately 20 out of 100,000 individuals in the U.S. have been diagnosed with MG. However, MG is considered under-diagnosed and the prevalence is thought to be much higher. At what age do most patients get MG? The most common age at onset is the second and third decades in women and the seventh and eighth decades in men. As the population ages, the average age at onset increases correspondingly; now males are more often affected than females, and the onset of symptoms is usually after age 50. Will my children get MG? Researchers are uncertain of the cause of MG, but do not believe that it is hereditary or contagious. A genetic predisposition to autoimmune diseases can run in families, but MG is not thought to be directly hereditary. There is a 12% to 20% incidence of neonatal myasthenia in infants born to mothers with MG. Neonatal myasthenia is a temporary condition of general weakness in a baby and usually occurs within the first 24 to 48 hours after birth and may last days or weeks. It is usually self-limited, lasting three to five weeks, but occasionally lasts longer. Pregnancy Will I be able to have children? Myasthenia gravis does not affect the normal growth and development of the fetus. Many women with MG have successful pregnancies. There is a 12% to 20% incidence of neonatal myasthenia in infants born to mothers with MG. Neonatal myasthenia is a temporary condition of general weakness in a baby and usually occurs within the first 24 to 48 hours after birth and may last days or weeks. It is usually self-limited, lasting three to five weeks, but occasionally lasts longer. Work Will I be able to continue working? This partially depends on the nature of your job and your MG, but most MG patients continue working successfully. You may wish to contact the Ticket for Work Program which is a self-sufficiency employment program for people with disabilities who are interested in going to work. 1-866-968-7842 or http://www.yourtickettowork.com/program_info. Doctors Can you refer me to a specialist in myasthenia gravis? MGFA cannot provide referrals for liability reasons. In general, we suggest that people see a neurologist who focuses on neuromuscular conditions at a university medical center. You may also wish to contact your local chapter, as they may have some ideas for you as well. Literature/Research Where can I get information to show my doctor? You or your doctor can request a professional packet for your doctor and we will send a packet via US Mail. Please allow two weeks for delivery. Where can I get more information on MG? The Myasthenia Gravis Foundation of America (MGFA) produces and distributes informational pamphlets available to the general public. These materials describe various aspects of the illness, information on treatment programs and a number of other selected topics. You may download and print our materials. If you have difficulty downloading and printing, request a packet and we will send it via US Mail. Please allow two weeks for delivery. Where can I get the Practical Guide or Survival Guide? MGFA does not publish the Practical Guide or Survival Guide. If you would like copies of those publications, you can contact the Myasthenia Gravis Foundation of California at 800-574-7884 (if in California or Nevada) or 323-887-0056, or access www.myasthenia-ca.org for more information. Where can I get more information on research? A research summary from our annual Scientific Session can be found on our Web site. Information of other research is also available here. Do you have a newsletter? Yes. Foundation Focus is a quarterly publication that we distribute at no charge, although we do appreciate donations to help cover our expenses. We can send the newsletter by mail or e-mail. To subscribe, contact the national office. MGFA newsletters from the past several years can be found on our Web site. Go to the newsletter page > Chapters/Support Groups Do you have a chapter in my area? We have over 30 chapters throughout the country. You can check here to see if there is one in your area. Do you have a support group in my area? You should contact your area chapter to find out if there is a support group in your area. If there is not a chapter in your area you may wish to visit MGnet, our online chapter, which offers regular online support groups on the weekends. Donations How do I make a donation to MGFA? You can donate online. You can also mail donations to: Myasthenia Gravis Foundation of America, Inc. 1821 University Ave W, Ste S256 St. Paul, MN 55104-2897 If you’d like to donate in memory or in honor of an individual, we generally send an acknowledgement to your designee (with the dollar amount omitted), as well as a thank you note to the person who made the donation. Please include the person’s name and address that you’re honoring and we’ll promptly send the acknowledgement. Thank you for your support of MGFA. Financial Assistance/Scholarships/Research Fellowships Where can I get more information about Social Security Disability? Information about Social Security Disability is available online at www.ssa.gov/disability or you can call 800-772-1213. Can MGFA provide me with financial assistance for my medical needs? Our primary purpose is to provide information and promote awareness about myasthenia gravis, and unfortunately we do not have funds to assist with patient medical needs. You may want to contact your local United Way First Call For Help or another information and referral line in your area to determine whether there are any organizations in your area that offer low-cost medical services or other assistance. You may also wish to see our compiled list of patient assistance resources. What can you tell me about research fellowships and scholarships? MGFA does not award scholarships. The Foundation offers research fellowships that are awarded annually. Our Henry R. Viets Fellowship is awarded to current medical students. The Osserman Fellowship is a post-doctoral research fellowship. Information copied from the MGFA website: http://www.myasthenia.org/amg_faqs.cfm

I get a lot of questions regarding the illnesses that now prevent me from working and being as active as I once was. In addition, the combination of these illnesses have made it unable for me to work...and I explain them--I have no problems discussing them, answering questions...but thought it might be useful to put something more specific in writing than my interpretation...and then I can direct people here for specific information, etc...so hope this helps. There will also be a subject in this blog called "The Spoon Theory"---very good story for anyone who knows anyone who deals with a silent disease which although we don't always realize it is pretty much everyone, and this story helps to explain it better than anyone can explain just not feeling good or just not feeling like going out to eat that night, etc....so hope it helps some people and that it's useful. If anyone has any questions about my illnesses or wants to discuss them due to someone they know having them, I'm always willing to lend a ear--now always able to help...but definitely listen and be supportive. If you take the time to read them...thank you!