Spoonies

How I Really Feel…….About Chronic Illness & Friendship

December 11, 2017 Friendship, Spoonies

So you’ve made plans and were genuinely excited to do whatever it was you planned. But the day comes and you feel like CRAP. You are hurting and battling whatever ailment is most current. And you know there is no way you can make it to said plans. But how do you get out of it without the other person hating you or dealing with the other person judging you? This is a constant battle I think all spoonies fight.Read More

Friendship and Chronic Illness 

October 30, 2017 Spoonies, Uncategorized

It’s true once you’re diagnosed with a chronic illness or a multitude of chronic illnesses your life changes. Not just simply Your Health either.  Your social changes dramatically.  It seems like your friends start dropping like flies. Some can’t stand the sight or the thought of you being chronically ill. While others can’t be bothered with your “flakiness,” and don’t understand why you can’t make plans in advance or why you will cancel at the last minute.  But with aRead More

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 bodyRead More

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 neverRead More

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 inRead More

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,” orRead More

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 inabilityRead More

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 knownRead More

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.Read More

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 whatRead More

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