Confessions of the Chronically Ill

Co-Written by myself & contributor Amy Nora

When you have a chronic illness like Lupus there are going to be some thing’s that you hold true. Things that you don’t share with most people, things that you know most people don’t want to know, or simply wouldn’t understand. Things that you feel people who aren’t sick would never understand. So as we have come to an end of the 2018 Lupus Awareness Month, I want to share some confessions from the chronically ill. Remember they might not be true for all chronically ill. This is based of the experiences/issues we have and deal with.

1. I often feel guilty — Some of you are probably wondering why we would feel guilty. Well, there are a MILLION different reasons. We may feel guilty that we can’t contribute to our families like we want to. Or we might feel guilty because we feel like we are a burden to our family and friends. Or because of the constants needs or help for basic daily life we need to ask of others. There are a million reasons why we might feel guilty.

2. I feel like I’m alone — Again you may be wondering how we could feel alone when we have friends and family all around us. Well, that’s simple, we may have people around us but they don’t know the struggles we face everyday. So it’s not so much that we may feel alone physically, it’s more mentally and emotionally. Because most family and friends don’t know what it’s like to live our lives, and they can never truly understand our world.  We try and protect them from what we go through, because as much as what we deal with, we also know that they feel a stress.  This can intensify a lonliness.  It creates a vicious cycle.

3. I often experience some level of anxiety and depression — There are so many reasons we may feel this way. We could be anxious because we aren’t feeling well and there’s nothing we can do about. Or because there is something coming up that we aren’t sure we have the energy or stamina for. On the other hand we could be depressed because we had to cancel ANOTHER date with a friend or our spouse. We might also be down because we feel terrible and have for awhile. That takes a toll on your mental health.  The very nature of having a chronic illness creates a constant mental battle that is medically known to alter brain chemistry.

4. I am almost always in pain — Even though you know I have pain medicine and have taken it. I am generally always hurting somewhere. NO, it’s not searing, burning level 10 pain. It’s more like a constant nagging annoying pain. Like a level 3 Pain. But it’s usually constant. And chances are I won’t say a word, and will often say “I’m fine” when asked.  Just remember, your fine and my fine are not the same.  Sometime ask, “No, how are you really doing today?  I want to know.  What can I do that would help you?”  When in pain and tired, these words are a balm physically and mentally.

5. Every good day is truly a gift —Sadly, we don’t always have a LOT of GOOD days. So when I do I may need help remembering that this day is a gift and I should take full advantage of it.  Do not make me feel guilty for having a good day, do not take my joy for this good day.  I may have to pay for this good day for a week to come or a few days in bed or on the couch with pain, fatigue, or any combo of problems including infections.

6. I don’t look sick — Nine Times out of ten you wouldn’t know by looking at us that we are sick. That our bodies are constantly at war with itself. We just look like average people on the outside, but inside we may be a disaster. Going out in public knowing that others can’t see our illness can lead to feeling alone, or being anxious.

7. I am often afraid to work, make plans or have a life — I know this one sounds silly. Why would anyone be afraid of those things? It’s simply because we never know what our body is going to do. I may feel fine at 8am, but at 11am I may feel like I was hit by a bus. Our bodies change so quickly and often without reason. So we never know if we make a dinner plan for next Wednesday how we will feel.  Every plan is made with the caveat of, “If I feel okay,” and buying tickets for an event is a terrifying exercise in wasting money and letting friends down.

8. Not all doctors understand — Sadly, this is the case a lot of the time. I don’t know how many times I’ve seen a doctor who’s not my own and they know nothing about Lupus or how it impacts a person’s life, body & health.  The American Medical Association even acknowledges that auto-immune diseases are one of the most under taught areas in medical school because of their complexity.  More times then not, as the patient you are educating the provider when you are already ill.  At best, they believe you and do some additional research quickly to understand.  At the worst, they do not listen and make medical decisions that do not help you are your condition because they do not understand fully how Lupus impacts you.  Remember, Lupus effects each patient differently.This is just a few confessions of the chronically ill. I could probably write a book on things we feel but never share. We don’t want pity so we often keep our issues to ourselves. We don’t want to be judged or looked down upon because of our health.  What we do want is for people to understand.  Just this week, Toni Braxton tweeted a picture of herself, and people were quick to make a judgement that she had plastic surgery.  No, she is on steroids for her Lupus.  Know Lupus.  Know that we deal with our body attacking us on a daily basis, and that no two cases are the same.  Know that we keep our secrets to protect you, but know those come at a cost.  So today…. We let a few cats out of the bag.

With Love,

Amber & Amy

The Strange Foe and Friend by Amy Nora

When it is 3AM and you are awake for your sixth day straight from painsomnia, it is hard to see anything good or nice in pain.  When you have a chronic disease such as Lupus, Fibro, Rheumatoid Disease, or many of the hundreds of others auto-immune diseases pain is just a part of life that sadly you live with.  Pain is a function that warns us that something is wrong.  It is our body warning us of danger in the case of a heart attack, of a catastrophic injury, or of the constant disruption of a system or systems.
This morning, I was laying there thinking that the pain in my legs had become almost a comfortable old friend.  It Is the pain I know that lets me know I have gone to far, the cliff is about ten feet ahead, but I am okay.  It is actually the oldest pain of my disease state.  Maybe that is why it is so familiar to me.  I hate it, I am by no means saying that it is something I like or appreciate as an entity within me.  Yet that leg pain is always the first to warn me that my disease is going haywire, that I have pushed to hard, that my world is not right.  In an odd sense, my foe is also my old friend.  It lets me know that my nemesis is preparing to strike.  It has become something I have learned to cohabitate with regardless of whatever else is going on.  The fire may burn hot with inflammation, but it is a familiar inflammation I know.   I know what will come next… I know what the next steps of my treatment protocol will be.
Today, I challenge you to think about what your warning symptom/Sign is… Do you have something that lets you know you are getting ready to flare?  A trigger?   Is there a common symptom or symptoms that warn of a coming flare?  Part of disease management is being able to target these.  Sometimes, no matter what you do there will be no warning.  You will wake up one morning in a flare, or you will be out to lunch and by the time you get home you will be unable to walk because of fatigue and inflammation.  But knowing symptoms of flares help prepare you to fight back against these diseases.
You can then work with your doctor to isolate these symptoms and work on a treatment protocol when these symptoms arise.  It also gives more information to your doctor as to how your disease works and acts.  This grants them more insight and information.  Remember, any information that we can continue to glean on auto-immune diseases is needed.
Knowledge is power!  Preparing yourself, Knowing what to expect and how to help yourself empowers you.
In Lupie Love…..

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