Dysautonomia- The In’s & Outs

October is Dysautonomia Awareness Month. What is Dysautonomia (can also be called Autonomic Dysfunction) you might be asking?? If you look it up you can find all kinds of information. According to Dysautonomia International, dysautonomia is a very broad term that causes a some sort of malfunction of the Autonomic Nervous System(ANS). Let me pause here and explain what what the AND does so you can have a better idea of what problems could arise. The ANS Controls the body functions that would be considered “automatic.”  So things we can’t actually control ourself. Things like our heart rate, blood pressure, digestion of food, constriction and dilation of the pupils, kidney function, and our body temperature. Anyone who has Dysautonomia may have trouble regulating the above. So their blood pressure and heart rate may fluctuate and could potentially cause fainting, lightheaded, malnutrition or even death. 

If I were to ask 10 people if they heard of Dysautonomia, I would guess it would be less than 5. That being said Dysautonomia is far from rare. It is said that over 70 MILLION people world wide live with this in some form. This condition is not gender or race specific. Anyone of any race, gender or age can be impacted.  Sadly, like many conditions that we apoonies have there is no cure. However, research is being funded to research and hopefully develop new and better treatments, and hopefully someday a cure. Sadly even though so many people are impacted by this condition, just like many spoonie conditions, it may take years to be diagnosed. Simply because of lack of awareness not only among the public but also within the medical profession   

Dysautonomia will generally involves failure of the sympathetic or parasympathetic systems. Causing excessive or even overactive ANS actions. Dysautonomia can be localized leading to reflex sympathetic dystrophy. Or more ge realized, causing pure autonomic failure. It can also be acute in action and therefore reversible , like Guillain- Barre. Or progressive and chronic like diabetes and alcoholism. Being that it’s a very complicated condition it can also happen as a primary condition, or along side with degenerative neurological conditions like Parkinson’s. Predominant signs of dysautonomia caused by sympathetic failure are impotence in men, and a drop in blood pressure when standing!! On the other hand if the patient is experiencing excessive sympathetic activity may have or show high blood pressure and:or a fast heart rate!!  Primary dysautonomia is  usually inherited or due to some sore of a degenerative disease, while secondary dysautonomias usually results from another condition or injury.

So we’ve talked about who can be effected by Dysautonomia/Autonomic Dysfunction acute vs chronic conditions. And what those conditions might look like. Now let’s look at signs and symptoms. 

Autonomic Dysfunction have the potential to affect only a small part of the ANS or the entire ANS. Symptoms may vary depending on how much of the ANS is affected and if there are any nerve disorders. 

Generic Signs and symptoms of Dysautonomia: dizziness and fainting upon standing up, (aka orthostatic hypotension), an inability to alter heart rate with exercise, or exercise intolerance. sweating abnormalities, which could alternate between sweating too much and not sweating enough, digestive difficulties, such as a loss of appetite, bloating, diarrhea, constipation, or difficulty swallowing, urinary problems, such as difficulty starting urination, incontinence, and incomplete emptying of the bladder, sexual problems in men, such as difficulty with ejaculation or maintaining an erection, sexual problems in women, such as vaginal dryness or difficulty having an orgasm, loss of vision problems, such as blurry vision or an inability of the pupils to react to light quickly. 

Anyone can experience any or all or none of these symptoms depending on what the cause. Symptoms such as tremor or muscle weakness may occur due to certain types of autonomic dysfunction.

There are three main types of Dysautonomia: 

Neuro Cardiogenic Syncope (NCS) is the most common kind of dysautonomia. It is estimated that tens of MILLIONS of people are affected worldwide. The main symptoms a person with this condition might feel would be: fainting (or syncope), which may happen once or it could be happening frequent enough that it would interfere with a persons daily life! 

Naturally gravity will pull blood downward  but a healthy ANS adjusts the heartbeat and muscle tightness to prevent blood from pooling in the feet and legs and makes sure blood flow returns to the brain.  Most treatments are aimed to reduce symptoms. 

For people who faint they should avoid the following triggers. 

-dehydration, stress, alcohol, very warm areas, tight clothes. 

Meds like beta blockers and pacemakers are often used to treat people with severe NCS. 

Postural OrthostaticTachycardia Syndrome: This conditions is also known as POTS and affects between 1 and 3 million people in the US alone. Approximately 80% of those 1-3 million are female. IT COMMONLY AFFECTS PEOPLE WHO ALSO HAVE AN AUTOIMMUNE CONDITION!!!!!

Symptoms can include:
lightheadedness and fainting, tachycardia, or abnormally fast heart rate, chest pains, shortness of breath, stomach upset, shaking, becoming easily exhausted by exercise, over-sensitivity to temperatures

POTS is usually a secondary dysautonomia. Research has found high levels of auto-immune markers in people with the condition, and generally patients with POTS are also more likely than the general population to have an autoimmune disorder, such as multiple sclerosis (MS) or lupus! 

Apart from people who have POTs having  auto-immune factors, other conditions that have been linked to POTS or POTS-like symptoms include: some genetic disorders or abnormalities, diabetes, Ehlers-Danlos Syndrome, a collagen protein disorder than can lead to joint hypermobility and “stretchy” veins, infections such as Epstein-Barr virus, Lyme disease, extra-pulmonary mycoplasma pneumonia, and hepatitis C, toxicity from alcoholism, chemotherapy, and heavy metal poisoning, trauma, pregnancy, or surgery

Research for the causes of POTS is continuous . Some scientists believe it might be due to a genetic mutation, while others think it is an autoimmune disorder.

Lastly, (for the purpose of this post) 

Multiple system atrophy- Multiple system atrophy (MSA) is less common than POTS and NCS. One of the big difference in this conditions and the others discussed is that  It is more likely around the age of 55 years. Even though it is less common MSA is estimated to affect between 2 and 5 people in every 100,000. It is oftenhard to diagnose because it is often mistaken for Parkinson’s disease because the early symptoms are similar. In the brains of people with MSA, causes certain regions slowly break down, in particular the areas of the cerebellum, basal ganglia, and brain stem. The break down in those areas leads to motor difficulties, speech issues, balance problems, poor blood pressure, and problems with bladder control.

MSA has not been found to be hereditary or contagious, and it is not related to MS. Researchers know very very little about what may cause MSA. As a result of not knowing the cause, there is no cure and no treatment to its slow progression. Treatment can, however, manage specific symptoms through lifestyle changes and medications.

As you can see Dysautonomia is very complicated and can impact many parts of the body from the heart to the brain. While some of the conditions that fall under this umbrella are well known with good treatment options.  Others, mainly MSA is very unknown and there is no cure or treatment.  Especially important to us is the research of POTS as is directly related to autoimmune like lupus. And many people with Lupus end up having POTS. Like many other conditions we need to do more research and find good treatment options for all these conditions!!
References:

http://www.dysautonomiainternational.org/page.php?ID=34

https://my.clevelandclinic.org/health/articles/dysautonomia

https://www.healthline.com/health/autonomic-dysfunction

https://www.medicalnewstoday.com/articles/76785.php

Raising Awareness of Invisible Illness 

Invisble illness, invisible disability……. To those who don’t have one, most would assume that it’s in your head. Thus invisible. However, this so far from the truth An Invisible Ilness is an illness that cannot be seen outwardly.  So for instance; Migraines, Lupus, Rheumatoid Arthritis, Kidney Disease, thyroid disease, Heart disease, arthritis, fibromyalgia, Chronic Fatigue Syndrome, or Chronic Pain. This list goes on forever!!  Invisible illnesses could even include mental illnesses. You can’t and most of the time will never see mental illness outwardly. They are conditions that can not be seen by just looking at someone. They are conditions that may be wreaking havoc on a person internally but you would never know because they may or may not be showing any signs outwardly. The Invisble Disabilities Association has deemed October 15, 2017 – October 21,2017 to be Invisoble Disabilitoes Week Online. A week to celebrate if you will, or bring conditions like these to the forefront. So let’s do just that. 
When you see someone in their thirties get out of a car they just parked in a handicap spot. What’s your first thought? For most I would almost guarantee it’s not “Oh how sad, I wonder what condition has made them disabled!”  For most it is probably more along the lines of “Look at that fat lazy girl taking up a handicap spot. I bet that tag belongs to her grandma or somethings!”  Now, don’t get me wrong not everyone thinks that way. But I know a large amount of people do. I have even caught myself at times thinking things I shouldn’t. Sadly in this day in age it just seems like second nature.  People don’t automatically assume that their may be a reason that a 32 year old slightly overweight female has some big bad illness because on the outside other than maybe a limp or the look of exhaustion on her face you don’t see anything wrong.  

    According To Everyday Health,  “But for the millions of people who are living with arthritis, fibromyalgia, chronic fatigue syndrome, and other forms of pain that are “invisible illnesses,” explaining what’s wrong is another side effect of their condition. Not only do you have to put up with challenging, often painful, and sometimes debilitating conditions every day, but on top of that, you may have to face skepticism from people — friends, family, and co-workers, as well as strangers — who don’t understand what’s wrong with you.”

    So what do you do to get past the skepticism and the non-believers? Do you put up bumper stickers with a list or your conditions? Or wear a T-shirt that says something along the lines of “Yes, I’m really sick? No!  Because you can’t change the way people think.  All we can do is pass on awareness to our friends and family. And even the people who follow us on social media. The only way we will ever get past the way people who view those of us with invisible illness is awareness. 

    Awareness can come in many forms. For me Blog. I can get my information out to larger volumes of people by blogging. I also use My social media accounts as platforms to spread awareness. Do people get tired of it? I’m sure! But we have to spread awareness for the Invisiblem Illnessea that are touching our families and friends. Should we shove it down peoples throats? Absolutely not, people aren’t going to change!  Some people will always think we are just lazy. And you know what we have to be okay with that bc we can’t change anyone else. 

    So help me help us this week by spreading awareness of Invisible Illness. One way we can do so this week is to change the frame on our face book profile picture to one that says I live with an Invisible Illness for the week. That just might open some eyes for people around you!!  The Huff Post posted this graphic and it feels like the perfect way to end this blog. But should you have any questions or anything please reach out!  

    Go out and spread awareness of your Invisible Illness/Disability!

    https://www.everydayhealth.com/pain-management/invisible-illness-when-others-cant-see-your-pain.aspx

    https://m.huffpost.com/us/entry/8178886

    Dealing with Social Isolation

    When you read the words social isolation what is the first thing you think of?  Is it Tom Hanks being stuck on a deserted island and resorting to talking a volleyball to not go nuts?  Is it those poor old people who live by themselves and have no friends or family to ever come see them? According to free dictionary.com – social isolation is the process of separating, or the state of being alone.  So this could be taken in several different ways.  Anyone can suffer from social isolation. 

    When you are chronically ill you often suffer from many kinds of isolation. You are feeling isolated from the world because you don’t leave the house often due to not feeling well and for fear of getting sick. You may also feel religious isolation because you can no longer regularly attend church like you once did. And you feel like you are isolated from your church family. Probably the most common type or feeling of isolation is the feeling of isolation from your friends and family. Also known as social isolation. Due to the fact that you no longer feel like doing the things you used to and you often times end up cancelling plans. And once you start cancelling plans much of the time people will stop asking you to do things. Because they just assume you’ll say no. And possibly because they assume you just don’t want to spend time with them when that’s so very far from the truth. 

    “Belonging” is a complex social concept, relating to people, places, and things. It is fundamental to our emotional well-being, helps define us, and keeps us connected. Social isolation, on the other hand, is when you distance yourself, physically, psychologically, or both, from your network of needed relationships.When you have a chronic illness, isolation can have unforeseen consequences, including worsening symptoms, unexpected health crises, hospitalization, loss of interest in activities, and decreased levels of energy. Anyone living with a long-term health condition is at risk for social isolation.” Upwell.com

    I asked the members of Lupie Groupies (the Facebook support group I am administrator of) about their thoughts and feelings on isolation. Below are what they had to say. 
    This fellow spoonie said “The only time I feel the isolation is when I’m feeling better. Otherwise to be honest I’m just to sick to care. If I am lonely or bored it means I’m improving ( which hasn’t happened in awhile).”  Which made me think. She is so right. It’s when I feel better that I start noticing my feelings of isolation because I feel like getting out of the house and doing things. Whereas when I’m sick the last thing I’m thinking about is leaving the house to hang out with friends.”

    Kim had this to say “I too generally feel more isolated when I am feeling better. However, these past few weeks have been the High Holy Days for our Faith and I have not been able to participate either because I have been too weak or in the hospital. This is really hard on me as my faith is very important me. I have not been to services in a while because of my fatigue and pain. These issues just aren’t going away either. I also don’t see many people on a regular basis either due to illness except family. When I am doing better this can be upsetting at times. I am an outgoing person with a heart for people. The friends I have do which are few have been my friends for 30 years and we are more family now than anything. They have stuck but others have not because I cannot be there to go out to lunch or just hang out. I cannot say with any certainty that I will available for them. My body doesn’t allow that.”  She touched on many of the types of isolation I talked about up above. And I appreciate her openness and willingness to share. 

    Elizabeth had this to say,  “I’ve been fortunate to have a long stretch of time that I was doing very well and was able to do things with a lot of people. Now I’m falling apart again, Benlysta stopped working, I HURT all the time, etc. I’ve had to cancel so many plans that I’ve had for quite some time and any time I allow myself to think about it I start crying. The internet is good for kind of talking with people, but on the other hand it sometimes hurts to look at Facebook and see life going on without you. And they should live their lives, I get that, but when living my life equals sitting around in pain it’s rough. So yes, social isolation for me is the worst right after a feeling great period because I’m having to say no to so many things I enjoy and then watch others have fun without me.”  She makes a great point about the internet. It’s a great tool for finding support groups and friends suffering with similar conditions. And finding people to talk to who share your feelings. However, it can also be a negative experience when you see all the fun things and vacations and such that your friends are doing and you aren’t able to. 

    There are ways to combat feelings of social isolation. Upwell.com have five things that can be done to combat those feelings. They are listed below. 

    Five ways to keep social isolation from taking over your life

    1. Do your research. People often struggle with what they don’t know. Invest time in learning about your illness, symptoms, and treatment options so you do not fall prey to the emotional difficulties of illness, including the desire to be alone. By being proactive, you can understand triggers and keep isolation from taking over your life.

    2. Participate in e-social activities. We are blessed to live in an age where social networks make it easy to reach out to others. These are especially helpful when illness and pain prevent us from leaving our homes. Many different e-social activities, including email and instant messaging, give you an opportunity to stay connected daily. It does not matter whether you are reaching out to friends, family, or online acquaintances; the important thing is that you are connecting and not struggling alone. 

    3. Join a real life support group. Real life support groups are a great place for the chronically ill and isolated. They are a resource for information and emotional support, and they offer an opportunity to vent to people who understand. They are also an excuse to get out in the world. To find a local support group, Google a national organization for your condition, and then locate links on the page related to support groups or a local chapter. For example, the Arthritis Foundation has a local chapter search where you can find all the resources for your area, including real life support groups. Or, you can try the U.S. Department of Health and Human Services’ support group page.

    4. Take part in the real world. There will be times when you struggle to take part in the real world—whether it is spending time with loved ones or focusing on your career perspectives. Participating in the real world keeps you from becoming isolated. It also keeps you enjoying life, making memories, and feeling positive in a life that isn’t necessarily easy. Let others know you can participate, and join in all the activities you reasonably can handle. Volunteer, join a book club, or meet a friend for coffee or lunch at least once a week.

    5. Get comfortable with being alone. While it is important to have a network of people to relate to, there will be times when life requires you to be alone or when you simply want to be alone. Get comfortable being on your own. Learn to lead your own life and make your alone time productive and healthy. You can try meditating, writing, or reading to help you deal with isolation when chronic illness is dominating your life.   

    Social isolation can be something that anyone can deal with. But those with chronic illness are more common to deal with these feelings. One of the ways upwell.com gave to help deal with these feelings is to find a support group. Support groups can provide you with information but they can also be a place to find friends and confidants in those who are dealing with similar conditions. If you don’t have a support group but are interested in finding one let me know and I can help you find one. 

    Amber 

    Reference:

    https://www.upwell.com/articles/coping-and-support/manage-social-isolation-with-chronic-illness.html

    Living vs Surviving 

    You know the question….. We’ve all asked it, and all thought carefully about how to answer. The question is nothing life altering to most and seems simple enough. But to many the answer is FAR from simple. Now you are probably wondering what question I might be speaking of. Well….. the common probably the most common and generic question asked, “How are you?”     To most that’s not a big question and gets a simple answer of “Okay,” or “Fine.” But how many of us with a chronic illness ever answer this truthfully? When was the last time you answered and said “I had a really horrible night l, my pain is at a 9, my head is pounding and I think I’m going to lose my breakfast and I’m barely surviving?”  Probably never! No one is ever that truthful and no one ever expects that kind of answer. What would you honestly do if someone you hardly knew all laid that on you? This leads me to my topic for this blog. The difference in living and surviving. And how truly different those two things are!! 

    If you were to define living what would say? To me living is just that, being able to go about your “normal” life with little to no pain. Not really thinking about your illness because if is not effecting your daily life. You can come and go as you please and not have to think about your daily spoon use. You can go do the things you enjoy and the drop of a hat with no second thought. Or do nothing at all. But you have the decision because you feel GOOD!!

    On the flip side surviving is just that. You are just getting by. You may be working and doing all the things that are required of you but that’s all you are doing. There are no extra events or fun activities because there is no energy. Even the activities that should be simple like showering or doing makeup are to strenuous and must be skipped to save energy for things later in the day. And when you are in survival mode you are definitely thinking about your spoon use! 

    I asked some of the women in a support group that I help run about their definition of living vs surviving and this is what they had to say! 

    One fellow Survivor said this “Living is being able to enjoy and do what you love. It is exploring, traveling, dropping everything and with no plan getting in the car and driving for the weekend and exploring back roads and meeting people. Surviving is figuring out if you can drive to your doctors appointment without killing others and not caring if you die. It is living on yogurt and eggo waffles because cooking is to hard. It is knowing the house or apartment is trashed but you can’t do anything about it because the friends and family have given up because there is no “getting better.” “

    Another had this to say, “My husband always tells doctors that I am alive but is not living. I think you can substitute surviving for alive. What he means is I’m breathing, but I have no life beyond my bed. So to us, surviving is just getting through each day, while living is doing all this things I took for granted before I got sick…going out to eat, seeing a movie, going on vacation, watching my son play baseball. The list is endless.” 

    Both of those are so true. They both do an excellent job of explaining what it means to live versus survive. And how different those two ways of life can be. Living is enjoying life and doing what you want when you want. While surviving is truly finding a way to make it through each task with the end goal of getting back to bed or the couch as quickly as possible. 

    So what do you do to get through those times when you are just surviving? Those times when people ask how you are and you wish you could really be honest, but instead you just tell them you are doing fine! Here are a few simple tips to get through those times when you feel like you are just simply surviving. 

    1. Do only the things that are essential! The bathrooms, the vacuuming and dusting can be put off for a few days until you are feeling better. The things like showering, dressing and general activities of daily living are more essential and those tasks should be focused on first. 

    2. If you have someone available ask for help. If you have a spouse, kids or even coworkers (not always an option I know) who can take over some of the tasks that for you are too hard to do at this time. 

    3. Rest, Rest, Rest!  Take any and every chance you can to rest. Even if you can only take a 15 min power nap to close your eyes and recenter yourself, use that time to so so. If you can schedule in a 2 hour nap then do that. Just rest. Whenever and however you can. 

    4. Even during the good times make sure that you take time for you. Whether that’s something as simple as a nightly bath by yourself after the kids go to bed.  Or something a little more elaborate like a mani/pedi and a massage once a month. Whatever it is is FIND TIME FOR YOU!!  

    5. Last bit definitely not LEAST. Find someone you can confide in. Someone who understands the daily struggles and will be there for you to lean on emotionally. Whether this is your spouse, your bestie, a counselor or someone you’ve never met but have connected to in an online support group. Whoever it may be, having someone to talk to will really help when you are struggling. 

    So as you can see there is a definite difference in living versus surviving. This may not be something you’ve ever thought about if you don’t live with a chronic illness that causes you periods of poor health and exhaustion. But it’s a real thing. Yes, technically we are all living but you have to look at quality of life as well. That’s where the term surviving comes into play. At times when you are doing just that. Just simply making it through each day alive. Remember there are groups out there with others going through situations similar to yours and they will be not only great Resources but they can also be a place where great lifelong friendships can be made.  

    Where Did All The Money Go????Bills Pills Bills Pills…..

    By Amy Nora
    It is the never-ending cycle of what many of those with Lupus and other Chronic health conditions struggle with. The financial struggles that people with SLE face can be a challenge on many levels. According to the Lupus Foundation of America, the average lupus patient spends approximately $12,000 annually on treatments; however, many treatments cost several thousand dollars a month or every few months. There is also the problem of loss of income due to the inability to work full time or the need to go on disability. The average total annual breakdown cost per Lupus patient in the United States is $20K.  

    This is an extraordinary amount of money to the average person or family. There are ways to help soften the financial impact though. First, drug manufacturers offer assistance programs for patients that are not on Medicare, Medicaid, or Tricare. If you are on any of those three programs, it is illegal for them to assist. These programs offer help with the medications that have copay’s of several hundred to several thousand dollar copays. Second, are organizations that have grants or funding available to assist with various costs associated with various conditions or drugs that are not associated with drug manufacturers so they do not fall into the prohibitive statues under the law. The most heard of and known one is the Healthwell Foundation to those in the Lupus community. Third, if you can meet with a financial advisor to work on medical expense planning. This is now just as important as retirement planning for those with chronic medical conditions. This is not Health Savings Accounts, this is not a specific type of account, this is a strategy based off expenses and potential length of ability to work.  

    There are honest and hard financial discussions that must be had if you have a medium to severe case of SLE. I would encourage you to plan wisely. When those expenses come that none of us can plan for, let us make sure we use what resources we can to lessen the impact as much as possible.  

    We already have to deal with pills, let’s do what we can about those bills…

     

    **********

    http://www.resources.lupus.org/entry/facts-and-statistics

     

     

    Lupus Paychosis/ Neuropsychiatric Lupus 

    Lupus psychosis or  Neuropsychiatric Lupus sounds pretty scary right? Well it is. It may also sound pretty far fetched…. That it is not!!!!It is a truly scary condition that someone with lupus can deal with, but others who don’t have lupus might have trouble understanding.  So what exactly IS LUPUS PSYCHOSIS??? Or Neuropsychiatric Lupus? The American College of Rheumatology (ACR) has identified “19 different ways that lupus can affect nervous system, including the brain. This complication of lupus is known as neuropsychiatric lupus, or NPSLE. Compiled research suggests that as many as 90 percent of adults, adolescents, and children with lupus will at some time experience the devastating effects of NPSLE” According to MedicineNet  “Systemic lupus erythematosus can cause inflammation of virtually any tissue of the body. … When lupus affects the brain, it can lead to headache, seizure, stroke, or psychosis. Psychosis is a serious mental disorder featuring defective thought processes, frequently with delusions or hallucinations.” 

    See scary stuff. But we never hear of it!? Is it really that common? No. I’ve never heard of it, it must just be a couple people here and there? Well….. that’s actually not the case.  According to National Institute of Health, Neuropsychiatric manifestations are present in two-thirds of the patients with SLE.[system lupus erythematosus]. The most common neuropsychiatric manifestations in SLE are cognitive deficit (49.33%), lupus headache (23.11%; in 57.69% of these patients, tension-type), psychoses (12.00%), seizures (10.67%), and cerebrovascular events (9.78%).[3]. So there you have it. Lupus psychosis is seen in about 12% of those with neuropsychiatric manifestations!  Who knew.

    Now that we know that this happens way more frequently than we thought let’s look at the symptoms of  Lupus Psychosis//Neuropsychiatric Lupus(NPSLE). The most common side effects or problems people who live with with Neuropsychiatric Systemic Lupus Erythematosus is cognitive dysfunction. This simply means that they have a hard time concentrating or they have a hard time with reason or problem solving or recalling memories. These symptoms may not seem problematic to the average joe but to a person suffering with them they can disrupt all aspects of life. I can personally tell you. They can affect your work, your ability (or lack thereof) to organize, ability to learn new things, ability to Process visual-spatial things, and language issues. For kids and adolescents the effects of NPSLE is usually on school work. 

    The most common complication of NPSLE is cognitive dysfunction, meaning difficulty concentrating or reasoning and problems with memory and recall. These symptoms can disrupt all aspects of life, including the ability to plan, work, organize, and learn, visual-spatial processing, and language. For children and adolescents especially, this effect of NPSLE on school performance is a major concern. To make SLE harder for kids and adolescents to deal with because  NPSLE occurs often. Usually early in the course of the disease process and in children usually happens with great severity.  However, other symptoms can be life-threatening. These including seizure and strokes. These can be major causes of illness and be major causes of changed quality of life or even brain damage and death. At this point there is no point that can gauge if Lupus is affecting your Nervous system. However, we do know that NPSLE can be present even if a persons SLE is inactive in their other organs.  Sadly, even though there are medications to treat symptoms of SLE with nervous system involvement, but not ALL PEOPLE with NPSLE will respond to those current medication. And the side effects of these meds can be quite undesirable. 
    We have now looked at  the frequency and the symptoms of this condition but I was curious as I’m sure you are as well , if there is a cause. So I did a little more research. And I really I didn’t find much that I hadn’t already found. According to the National Institute of Health “Psychiatric symptoms in SLE can be functionally independent psychiatric disorders. It can be due to drugs (steroids) used for SLE or secondary to SLE because of its brain involvement, which is termed as neuropsychiatric systemic lupus erythematosus (NPSLE).”

    I talked with a couple of people who have suffered with Lupus Psychosis and this is what they told me: Melissa said ” I have dealt with lupus psychosis a few times. Both times I ended up being admitted and tested for every illegal drug under the sun because they couldn’t figure out what was wrong with me. It was scary I couldn’t feed myself, work a phone, or even the tv remote. I couldn’t even recognize my family. Then I was having these crazy physcadelic dreams. And I would cry to my parents that the nurses were making me clean hallways of the entire hospital with bleach on my hands and knees.  It is definitely a scary ordeal and something I hope to never experience again.”

    Susan’s experience is a little different. She said “I get brain fog often. Sometimes when people are talking I don’t understand what they’re saying, even though they’re speaking English. Then there’s the persistent searching for words and forgetting things. It’s especially embarrassing when I’m teaching and I know what I want to say but the word won’t come out.”

    Living with a condition with Lupus Psychosis or NPSLE is a difficult one. And it truly Becomes a family affair. Because it affects the persons children, parents, siblings etc.  Anyone’s life who lives with the person is going to be affecte any at times devestaved by NPSLE. There is so little understanding of Lupus Psychosis and NPSLE  that there needs to be an expansion in clinical and research development urgently!!! 

    -Amber

    Resources: 

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3361854/

    http://www.lupus.org/research/neuropsychiatric-lupus-research-program

    http://www.medicinenet.com/script/main/mobileart.asp?articlekey=21147fojovç l  

    What is Sjogrens?

    Sjogrens…… How many of you know what that word means or is? According to Mayo Clinic, Sjogren’s (SHOW-grins) syndrome is a disorder of the immune system which is identified the two most common symptoms: dry eyes and a dry mouth. Sjogren’s syndrome is often found in those with other immune system disorders, such as rheumatoid arthritis and lupus. In this blog post we will look at what Sjogrens is, how many are affected, the symptoms and how it is treated. April is Sjogrens awareness month so that’s what I want to do. Bring awareness to this condition  

    Although you can develop Sjogren’s syndrome at any age, most people are older than 40 at the time of diagnosis. The condition is much more common in women. Treatment focuses on relieving symptoms. It has been estimated that approximately 1 in 272 people will be diagnosed with Sjogrens. That’s abou 1 million people in USA. Researches few that there are an estimated 2 million people that have Sjogrens and are undiagnosed.  Son experts believe that 1 to 4 million people have the disease worldwide. 

    In a person who has Sjogrens syndrome, their mucous membranes and moisture-secreting glands of the eyes and mouth are usually affected first. Reaulting in decreased production of tears and saliva. This leading to dry eyes and mouth. Sjögren’s also can affect other parts of the body. Including the skin, joints, lungs, kidneys, blood vessels, digestive organs, and nerves. Symptoms other than dry eyes and mouth can be: dry skin, skin rashes, a chronic dry cough, problems with the thyroid, joint and muscle pain, Vaginal dryness, as well as numbness/tingling in the arms and legs.

    At this point the exact cause of Sjögren’s syndrome is unknown. However it is thought by many that it may be caused by a combination of two things: genetic predisposition, or exposure to something like a virus or bacteria.

    How is Sjogrens diagnosed? There are several different ways that this condition can be diagnosed. Your doctor may order blood tests to check for: they are looking for levels of different types of blood cells. Along with The presence of antibodies common in Sjögren’s syndrome. They are also looking for presence of inflammatory conditions or any indication of problems with the liver or kidneys in the blood. The dr may also order eye tests to measure the dryness of the eyes. They also may ordering some imaging to look at the functions of the patients salivary glands. Or maybe a lip biopsy to look for the presence of clusters of inflammatory cells, which would indicate Sjogren’s syndrome. 

    Now that we have looked at the cause, the symptoms and how the condition is diagnosed. Let’s look at how the condition can be treated. Treatment for this conditions is based almost primarily on symptoms. There are several different medications that can be prescribed to treat Sjogrens. 

    The dr may want you to try something that will help increase your production of saliva. Drugs such as pilocarpine (Salagen) and cevimeline (Evoxac) can increase the production of saliva, and sometimes tears. S

    Othe medications that could be given  toaddress a specific complications that you might develop. If you develop arthritis type symptoms, they might suggest nonsteroidal anti-inflammatory drugs (NSAIDs) or other arthritis medications. Prescription eyedrops can be given if you don’t respond to over-the-counter drops. Should you develop a Yeast infection in your mouth, they can be treated with antifungal medications.

    Due to the fact that Sjogrens is categorized with other autoimmune conditions. Your dr might decide to treat your symptoms with Hydroxychloroquine (Plaquenil), a drug designed to treat malaria, is often helpful in treating Sjogren’s syndrome. Also, any drugs that suppress the immune system, such as methotrexate might also be given. 

    Help me bring awareness by sharing this blog post with others. So that one day there can be a cure found!

    -Amber
    http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/definition/con-20020275

    http://www.rightdiagnosis.com/s/sjogrens_syndrome/stats.htm

    https://www.niams.nih.gov/health_info/sjogrens_syndrome/sjogrens_syndrome_ff.asp

    Cyclic Vomiting Syndrome 

    When you hear CVS what do you think? If you are like most you probably think of the big box pharmacy. And you wouldn’t be alone in this. That’s what most would think. However, if you have CVS or know someone who suffers from it, that is not the first thing that comes to mind. You would probably think of Cyclic Vomiting Syndrome. What is that you ask!? We will discuss that in today’s post. We will look at what CVS is, what the symptoms are, what the treatment is.  And we will get the perspective of a CVS patient. Let’s not waste anymore time. Let’s just jump right in. 

    According to the National Institute of Health, Cyclic vomiting syndrome, sometimes referred to as CVS, is an increasingly recognized disorder with sudden, repeated attacks—also called episodes—of severe nausea, vomiting, and physical exhaustion that occur with no apparent cause. The episodes can last from a few hours to several days.  Wow that sounds great right?  No, okay you are right. It’s miserable. Absolutely 100% miserable for those who suffer from it. Many who suffer from this struggle to find triggers. Meaning they can’t pinpoint what causes it so the can reduce the number of attacks they have. So they will vomit everything they try to consume for hours or days. It’s the a stomach bug on steroids. It often hits fast and without much warning and depending on the attack like said above can last for hour, days or even longer.  This may cause the person to have to stay in bed and miss work or school for long periods. And the person suffering may even have to seek medical treatment for IV fluids or other methods of treatment. Which we will discuss later. 

    How many people suffer from CVS? The exact number is unknown. But according to the NIH it is estimated that it could affect 4 to 2,000 per 100,000 children. The condition is diagnosed most often in children, although there have been some recent studies that suggest that the condition may begin in adulthood as commonly as it begins in childhood. 

    So what causes Cyclic Vomiting Syndrome? Sadly, the exact cause of CVS is unknown. But experts believe there are some things that can contribute to the disease.  Some of these conditions as listed by the NIH are as follows: gastrointestinal motility which is the way food moves through the digestive system. Or moves at a slow pace through the digestive system. A persons central nervous system function, which includes the brain, spinal cord, and nerves that control bodily responses.  A persons autonomic nervous system function, which is the nerves that control internal organs such as the heart. Or the person may have hormone imbalances. It is also thought that it’s possible that an abnormal inherited gene may also contribute to the condition.  

    There are also triggers that can cause an attack of CVS.  Here are just a few: emotional stress, anxiety, or panic attacks, infections, eating certain foods, like chocolate, cheese, or additives such as caffeine, nitrites which are commonly found in cured meats such as hot dogs, and MSG. Other triggers could include: hot weather, menstrual periods, motion sickness, overeating, fasting, or eating right before bedtime or physical exhaustion or too much exercise. So basically, after looking at the list of triggers, it’s possibk that just about anything can trigger an attack. 

    What are the symptoms of CVS? The most common symptoms are severe vomiting that occurs several times per hour and lasts less than one week. And also three or more separate episodes of vomiting with no apparent cause in the past year.  A person with CVS may also experience abdominal pain, diarrhea, fever, dizziness, and even sensitivity to light. These symptoms may lead to dehydration which can be a life threatening condition. 

    So now we know what CVS looks like and what causes it. But the more important question is what can be done to treat a person who is experiencing a CVS attack or flare. There is sadly no cure at this time. So treatment is more symptom management.  A person with CVS may be given anti-nausea meds, sedatives, medicines that suppress stomach acid, or antidepressants.  A person may be given meds that are used to treat migraines. Those meds can be helpful in treating or preventing a CVS attack. 

    When I spoke with Melissa Kline, a CVS patient she gave me some insight into what it’s like to live with this condition. She stated that she has been able to learn what  her triggers are.  For her Benlysta (which she receives as treatment for her lupus!) and stress are the big two things that will almost always trigger an attack. She states that some patients can catch their episodes early with anti nausea meds, while others end up in the ER to be given enough medication to mildly sedate them. She said that sedating a cvs patient is kind of like a reset button. By hitting that “reset button” they can slow or stop the symptoms, and give the patient a break. Many times she and other CVS patients end up in the ER due to dehydration. So they are treated with IV Fluids and meds to control the nausea so they are able to stop vomiting. Cyclic Vomiting Syndrome is a horrible and challenging disorder and no one should have to deal with it. She is hoping that they are able to find better treatments and a cure in the coming years as more awareness is brought to the condition. She also suggested that anyone who has the condition or thinks they might visit cvsaonline.org. 

    So help us bring awareness by sharing this article after you read it. 

    -Amber

    http://www.mayoclinic.org/diseases-conditions/cyclic-vomiting-syndrome/basics/symptoms/con-20028160

    https://www.niddk.nih.gov/health-information/digestive-diseases/cyclic-vomiting-syndrome

    http://cvsaonline.org/

    Multiple Sclerosis Awareness Month

    March is Multiple Sclerosis Awareness month.  So I thought I would do my part and bring awareness to another awful autoimmune disease. I decided I wanted to cover the following topics in the blog.   What is MS? Who gets it? What are the symptoms? How is it treated? And what can we do to raise awareness? So let’s jump right in. 

    Per the Mayo Clinic no one is really sure of the cause of MS. But it is considered an autoimmune disease, in which the body attacks its own tissues. “In this case the immune system destroys the myelin, which is the fatty substances that covers and protects the nerve fibers in the brain and spinal cord.” MS is a disease of the central nervous system (CNS). The CNS consists of the brain, optic nerves (which control the eyes), and spinal cord. The destruction of the myelin causes reduced communication between the brain and the nerve pathways. 

    Due to the above noted destruction of myelin and the fact that in involves the nerves and the spinal cord. Common MS symptoms are: visual problems, overwhelming fatigue, difficulty with balance and coordination, and various levels of impaired mobility. More specifically MS can cause pain in the back or the eyes.  Tremors in the extremities may also be present.   They can have all sorts of problems with their muscles from cramping, to the inability to rapidly change motions, or could have involuntary movements, muscle paralysis, muscle rigidity, muscle weakness, problems with coordination, stiff muscles, clumsiness, muscle spasms, or overactive reflexes. It can also cause sensory issues like pins and needles,  difficulty with taste, reduced sensation of touch, or uncomfortable tingling and burning. And can also cause issues with bowel and bladder control.  This list is not all inclusive. There are a ton of symptoms that can be present in someone with MS. 

    It is estimated that about 2.5 million people worldwide have been diagnosed with this disease. This number can only be estimated because it is not a disease that the CDC requires physicians to report. Also because the symptoms can sometimes be so vague. Most people who are diagnosed with MS fall between the ages of 15 and 50. MS is not something you you can “catch” from someone who has it. Although it does seem to have a heridatry link.  At this point there is no cure but researchers continue to try to find one.  

    Right now the main treatments for MS are physical therapy to treat the muscle and balance issues. A neurologist is usually the main dr to treat Ms and will do with immunosuppressive drugs to suppress the immune response that causes the condition. As well as treating the patient with steroids to treat some of the symptoms and hopefully slow the progression. It is also recommended that people with MS see a counselor of some kind to help deal with the changes in their functioning and changes in lifestyle they are dealing with. 

    Since there is no cure we all need to do our part to raise awareness. Simply because it can affect anyone. It doesn’t see gender or race.  It’s simply a dysfunction of the persons immune system. We can raise awareness by getting involved with or donating to the MSAA. The Multiple Sclerosis Association of America. They are the leading resource for those with MS. They have many functions. They provide resources to people with MS, they fund research for MS and education for those newly (and not so newly) diagnosed with MS. One thing we can all do easily is wear orange during the month of March to raise awareness. As orange is the awareness color for MS. 

    I have provided the link to the National MS Society. On that page there is more information about raising awareness and the things they are doing to do so. http://mymsaa.org/news/ms-awareness-month-2016

    This was meant to be a brief but educational piece about MS and how we can raise awareness. I hope it opened your eyes a little on how many people are affected. And also give you an idea of how this disease affects those who have it. As well as provided you with resources to help raise awareness of this horrible disease. 

    -Amber
    Resources:

    http://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/dxc-20131884

    http://mymsaa.org/news/ms-awareness-month-2016

    Have You Laughed Lately?

    Maintaining a sense of humor when you have a chronic illness is vital.

    Roses Are Red Violets are Blue,

    You have a Chronic Disease, the joke is one you…

    Well, except it is not a joke. It is no laughing matter. We face challenges on a daily basis that would cripple most; we are forced to make decisions and then live with those decisions that are not always pleasant. Yet in spite of this, we keep going and are a pretty amazing group. There are days when laughing or trying to find something to laugh about is impossible. Which is why, that is the most important moment to find something to laugh about. “A day without laughter is a day wasted,” according to Charlie Chaplain. Let us explore what that means in the context of chronic illness.

    Maintaining a sense of humor when you have a chronic illness is vital. We all know that after a while that sense of humor gets cynical, and sometimes a little sick in the head. As a demographic, we are more likely to suffer from depression. While this will not eliminate depression, it will lighten those moments or give us a brief reprieve when at that moment all seems dark.

    You know that friend that always has the “cure” for your disease. Drink the boiled warts of wild boar, mixed with two teaspoons of lemon juice, a tablespoon of apple cider vinegar, mix in the ash of the death star, and when all done add to a triple green smoothie of kale, spinach, and broccoli and you will be magically healed. Oh, you thought that orange creamsicle smoothie was good? No, change that to a triple green of kale, spinach, and broccoli, add the powder of one dried beet, and drink when the rooster crows at dawn. It is pure magic; the immune system will heal itself. Wait….. no don’t wait.

    Go on, admit it, we all have that one friend that will give us that magic cure to help us. They may have the best intentions, but the eye roll just came out didn’t it? You can admit it.

    Do you have that go to tv show or movie? What about that friend that makes you laugh? We know that humor makes us feel better physically and emotionally. So the next time you are feeling down, or depressed, play with your puppy, cat, rabbit, or pet; find that YouTube video, call a friend, put on a show, or just make yourself laugh. Even the physical act of smiling releases those happy little endorphins. Never underestimate the glorious feeling of joy as that laughter rips through your belly as you lose control…. Just don’t pee your pants because you were laughing so hard. Oooops, some of us can’t help that.

    “ I have not seen anyone dying of laughter, but I know of millions who are dying because they are not laughing.” Dr. Kataria