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

    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.  

    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/

    Sick of Being Sick

    Since the beginning of March I’ve been sick!  Almost every day I feel terrible. And I have been running high fevers of an on all that time. I’ve had enough antibiotics for three people. Even IV antibiotics. And still sick. I have a sore throat, runny nose, constant wheezing and coughing.  Always nauseated and have actually lost about 5 lbs.  Now my lupus is flaring because I haven’t had my treatment since February because I have been sick. And can’t get it till I’m not sick or at least not running a fever. So it’s like a never ending circle. Sick, lupus flare, sick, Lupus flare, add in migraines and IC pain and repeat. It’s really getting old. 

    I realized the one day this week that I haven’t left the house other than to go to work (which I haven’t done a lot of), or to go to the drs office. And my friends don’t get it. They just think I’m using an excuse again not to do something but I’m not. You know when you feel like crap the last thing you wanna do is get out of your nice comfy bed and go to some loud restaurant that serves food that just the smell alone makes you queasy. And all the noise causes a migraine.  It’s just not worth it. 

    But then you get depressed bc you haven’t really gone any where or done anything. And you really don’t want to. And then for me the tears start. A dr I saw this week had known me for about eight years through work, looked at me and asked if I was depressed. And the water works started flowing. And then EVERYTHING that day made me cry. TV commercials, someone teasing me. It was stupid. Someone told me that maybe I should go back to my counselor. They were probably right and are seeing things that I don’t as they see me in a way I cant. So I made an appt. 

    I saw a specialist in infectious disease.  And all my labs came back normal for the most part. So there’s really no reason for the fever. Except I’m a LUPIE!!! So I have no idea. And my insurance wants me to MAIL order the treatment I get ever 28 days in my port. Or they will charge me $835 a month. Sighhhh. Insurance companies are a topic for another day. So I have no idea what that next step will be if my provider and pharmacy don’t all me to mail order my medicine. 

    I know that my problems pale in comparison to others. And I am okay with that. Sometimes you just need to vent. I am thankful for the health that I have. And that I am still semi-able to work part time. I am grateful that I am still able to get out of bed everyday.  And I don’t take any of those things for granted because I know that could change at any given moment. But truthfully, I’m just sick of being sick. 

     We all have crappy days, weeks or even months. But we will get through. We just have to pick ourselves up by our boot straps like we always do and do what needs to be done.  I think those of us with chronic illness are probably the strongest people I know. We do things with pain that other would never think of. We work on no sleep when others couldn’t make it an hour. We push through and try to make everything seem FINE. When really it’s far from that. I have had soooo much support from the chronic illness community the last month and really the last five years.  We are a hell of a group. And I couldn’t make it without all your support!!! 

    -Amber