Depression, My Story. By Kayla Aiken

Depression has many faces, and can look many different ways! It’s not always the person that we picture in our minds, or saw on TV. Someone who is so down that they can’t get out of bed or complete their daily tasks. It can look like your best friend who is working and going to school full time and has become very good at hiding her secrets.

This year through a mutual friend I was lucky enough to be introduced to Kayla. I’m really just getting to know her. That being said since the first time we interacted she has always been very open about her battle with depression. Since she is so open and willing to share I asked if she would be willing to tell her story here! Thankfully she agreed. Below is Kayla Aiken’s story, her story of how depression impacts her life.

When I woke up today, I found myself on the couch barely able to open my eyes. I reached for my phone to see what time it was. 10:07 AM. At this point, I had slept 23 hours since the morning before, and I went back to sleep an additional four hours before waking up to even eat something. This is a very minimal depiction of what depression looks like. My doctor calls it “leaden paralysis”, a symptom of Major Depressive Disorder, Atypical in subtype. It’s where your entire body feels like lead. Your arms are so heavy it feels as though you can’t lift them. Your legs are leaden and making it up stairs is a struggle. This is mental illness. My diagnoses include the previously mentioned MDD, severe, recurrent, and atypical, PTSD, Generalized Anxiety Disorder, and an Eating Disorder.

My story starts here: I graduated nursing school in May of 2010. After four years of nursing in the same location, I decided to become a travel nurse. I traveled in Oklahoma, Connecticut, and Missouri. I was in Connecticut in 2015 and started to feel sort of “blues-ish”. I thought it was just because of the weather. So, I came home to Missouri in March and by the Fall of 2015 I was a worried, depressed, and anxious mess. I couldn’t take my dog outside without my gun on my side or maise in my hand. I packed food and put it in the trunk for my drives back and forth to work just in case we got hit with a nuclear bomb or an EMP…etc. My hands would shake uncontrollably at times and I couldn’t eat anything. I went on a cruise in October of 2015, but I didn’t even enjoy it to it’s fullest because I was so concerned that the ship was going to sink or we were going to get stranded on some island we visited. My anxiety was out of control.

In January of 2016, I saw my doctor for the anxiety. He asked me if I was depressed, also, but I denied it being an issue. But, it was. It was a major issue. I called in a couple of weeks and said, “Oh, I think I am struggling with depression, too, so if I could get something for that…” He prescribed Prozac, but it put me to sleep for a week; so, we made the switch to Effexor. Between the medication for anxiety and the Effexor, I started to feel a little more normal again around the March/April months of 2016.

By the fall of 2016, I started to feel as though the Effexor was no longer working. I was driving back and forth to work envisioning myself driving off the road into a ravine, or seeing myself take my gun in my hand and put it to my head or my heart, or taking all the pills in my medicine cabinet. I was so mentally ill. So, so ill. I was losing friendships, my family relationships were strained, and I was calling off work more frequently than I could afford. I was faking fine so well, that only my closest friend really recognized how mentally ill I was.

I think it was in November of 2016 that we found out my Dad had been having an affair. And then my extended family and I had a big blowout over Christmas 2016. Two major stressors in a short amount of time.

In January of 2017, I went back to my physician and brought my best friend along to help me stay honest. I told him, very fearfully, that I was having suicidal ideations and that my depression was out of hand. He changed my medications up a little bit, and sent me on my way. The medications did not work. In February, I found out that my two younger sisters had been sexually assaulted by an older boy cousin. It infuriated me. It destroyed me. And, I had no idea what I could do about it; because my sisters are adults now and will deal with it the way that they want to. But, if it was up to me, I would have him and everyone else who was involved put on trial for such a heinous crime.

March of 2017 rolled around and I flew to San Diego for a conference, still so very sick, and losing hope by the minute. I was driving home from St. Louis from the conference, and tears rolled down my face until my eyes were nearly swollen shut and physically ached. What was I going to do? I couldn’t live like this.

A few weeks later, on April 3rd, I delivered my 14th baby during my midwife clinical. I drove home later, took a shower, and curled my hair. I was going to dress and do my makeup despite feeling so depressed. I went to a 12-step meeting, and when I got in my car I just had this feeling of “I cannot do this”. I called a friend, and she was cooking dinner, so I let her go. I went home, I played piano, I journaled, I watched TV, and nothing was working.

So, the evening of April 3rd, 2017, I took approximately 140mg of Ambien. My standard dose was 5mg nightly. I won’t go into the events of that evening, because it is just a lot. But, I woke up the next day in the local ER to find out I was going to be admitted to the hospital psychiatric unit for a week. It was one of the hardest weeks of my life.

In 2017, I was admitted to hospital psychiatric units four separate times. I spent 3 months in a residential facility in Chicago getting treatment for my depression and other mental illness diagnoses. I met a ton of wonderful people there. People who were also ill, but wanted to get help so much that they stopped their lives to go into a long term inpatient facility to work on their shit. It was liberating, and oh so hard. But, I’m thankful I had the opportunity to do it.

So, where am I now? Still in treatment. Still working on my shit every day. Still focused on getting up out of bed and making myself do things like laundry and dishes and putting gas in my car and getting groceries so I can eat. It’s not easy. Every day is hard. But, every day is a gift. I am trying to see that for the truth that it is.

I feel like all of the above was probably very boring to read, so if you made it this far, thank you! I’d like to take a moment in closing to talk about mental health stigma. I looked like I had it all together. I had recently graduated with my Bachelors in Nursing. I was pursuing my Masters in Midwifery from a prestigious university. I was working full time. I was going to church, maintaining friendships, and seeing my niece and nephew as often as possible. But, inside I was being eaten alive by my demons. Many people who struggle with mental illness do not look like they do. Still to this day, when people find out I struggle with depression, they are shocked. “But you are so personable and bubbly.” they say. I would encourage you to get in deep with those that you are surrounded with on a daily basis. Your family, peers, and coworkers…etc. Ask them how they REALLY are. Ask them about anxiety or depression and whether they have ever struggled with it. Be honest about your own struggle with anxiety and depression with someone who is safe in your life. Find someone safe for yourself, and be someone safe for others. When I attempted suicide in April and July of 2017, it was my closest best friends who intervened and saved my life.

Thank you for reading, and if my story resonates with you and you’d like to reach out, I’ll leave my contact info below. Feel free to reach out if needed.

Kayla Aiken

kaylaaiken@icloud.com

If you are having suicidal feelings or thinking of ways you could end your life, PLEASE reach out to someone you can trust! There is help out there for you!!!

As always with Love,

Amber

Explaining Fibromyalgia in Six Quick Points

Fibromyalgia is a term that has been thrown around for years. For many years the medical profession used Fibromyalgia as a catch all. People who had generalized pain that couldn’t be diagnosed would be given the diagnosis of Fibromyalgia. The medical profession didn’t really seem to understand what caused it, and what could be done to treat it. In the past decade the condition has become much more understood and there are new diagnostic criteria that the patient must meet. I will discuss those shortly. Like many other conditions the more research that is done the more everyone understands it and it can be treated.

1. So what IS Fibromyalgia? The definition for this condition has evolved over the years. For now it is defined as a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness in localized areas.

2. How many people have Fibromyalgia? Most recent estimates say that there are 3 million cases per year!! According to The National Fibromyalgia Association, Fibromyalgia is one of the most common chronic pain disorders. It is estimated that 10 million people in the U.S. are affected, and an estimated 3-6% of the world population. This condition is normally seen in women, approximately 75-90% affected are women. But it also occurs in men and children of all ethnic backgrounds.

3. What causes Fibromyalgia? Currently researchers are not exactly sure of the cause of FM. That being said more research is being done all the time that is leading in the direction of determining the exact cause. Most agree though that FM is caused by issues with the nervous system. They feel that those with FM will experience amplification of pain due to the abnormal way the nervous system is processing the signal. The newest research is leading in the direction that there may be a genetic predisposition in those who have FM. I expect to see a lot of new information coming on this front in the coming years!

4. What symptoms would a person with Fibromyalgia present with? The main complaints a person with Fibromyalgia usually present with the following: pain, fatigue, and sleep disturbances.

Pain– The pain that comes along with this condition is usually chronic and widespread. It can be felt all throughout the body and may vary in intensity. The pain can be described as stabbing, shooting, aching, throbbing or even as numbness and tingling. Usually people will complain of morning stiffness and abdominal pain until they get stretched out.

Fatigue– The fatigue associated with Fibromyalgia is much, much more than just being tired at the end of the day. This fatigue is an all-encompassing exhaustion that interferes with daily life! It is causes an inability to complete basic tasks.

Trouble Sleeping– Often times many people who have FM also have some sort of a sleep disorder that prevents them from getting a deep, restful, restorative nights sleep! This making the fatigue that much worse!

Cognitive difficulties – Many who suffer from FM will complain of “fibro fog.” Which is also known as brain fog. This is a symptom of fibromyalgia where you feel as though you can not think straight. You may have trouble understanding things, remembering things, or even losing things. All of which can be “normal” with Fibromyalgia. This is a form of cognitive dysfunction that comes and goes with FM.

5. How is Fibromyalgia diagnosed? In 1990 the American College if Rheumatology (ACR) developed classification criteria for diagnosis. The criteria included a history of widespread pain in all four quadrants of the body for a minimum of 3 months prior to diagnosis. It also required that the patient have pain in at least 11 of the 18 designated tender spots. In 2010 the ACR developed new diagnostic criteria that did not rely on evaluation of tender points. Instead focused on the person’s pain being widespread and accompanied with other symptoms like problems sleeping, and fatigue. They also take into account the cognitive issues that the patient may be feeling/dealing with.

6. How is Fibromyalgia treated? In order to effectively treat FM the symptoms need to be treated. Thus treatment is really about symptom management via medications,or other treatment modalities. Medications or other treatments like massage to reduce pain, sleep management and finding ways to lower stress are the main treatment modalities. Exercise and eating healthy, as with most conditions are encouraged to help lower the pain level. A person with FM will also need to discuss the cognitive difficulties they may be having with their provider so a proper treatment plan and recommendations can be made.

This was a quick and dirty way to explain Fibromyalgia, how many people are impacted, the suspected causes of FM, as well as the diagnosis and treatment of the disease. Even with the changes in diagnostic criteria and more research being done, FM is still not fully understood. And treatments often end up being trial by error. One medication/treatment may be prescribed and if that works they will continue it. If not, they will continue down the line trying to figure out what works for each person. And the fact that many will also experience a number of other symptoms and overlapping conditions, like Irritable Bowel Syndrome, Lupus & Arthritis can complicate things. That being said over the last decade the understanding of the disease has increased and they are always working on new medications for treatment of FM. Based on the trends over the last few years it should be expected that there will be big advances in the understanding and treatment of FM. This post just shows more clearly that those who suffer from FM are NOT alone! It also shows that patients need to continue to advocate not only for their own care, and the care of others who can’t advocate for themselves. And more focus needs to pushed through the proper government channels to advocate for more money for research of this condition!

With Love,

Amber

The Things I Wish Someone Would Have Told Me

Even though I’ve been diagnosed with Lupus, Fibromyalgia, and Endometriosis there are still things I come across that I wish someone would have told me about. You all know what I’m talking about, those little “tricks of the trade” that people who have been dealing with that condition for awhile and no one shares with the newbie. So after having a discussion with several people across several different groups, I have complied a list of things by asking others who have autoimmune illnesses. The list we complied could apply to anyone, not just me, but could change the way you do or look at things!!

-I wish someone would have been honest with me and told me that it may take MONTHS or YEARS to accept the changes brought forth by the illness. If you can ever truly accept the changes.

-I wish someone would have made it more clear that this is not something you can adjust to overnight! It may take a lifetime to fully adjust to the changes in your body, your energy level and your fatigue.

-I wish someone would have mentioned the depression that happens as you start to really accept the changes in your life is real. As well as made it clear that is is okay for you to feel that way! And suggested early on that seeing a counselor might be a good idea. 

-I wish someone would have prepared me for the fact that there is a very good chance that you won’t make a LOT of the plans you schedule, due to your health. Even if it was something you planned and were looking forward to. You just may not make it!! And in most cases your friends will never understand why you can’t just get up and go.

-I wish someone would have prepared me for the fact that not all Rheumatologist’s (or other drs for that matter) know much about Lupus or the way to treat it. And most even if they are familiar may not know the newest meds or what’s really best for each individual patient.

-I wish someone would have reminded me that no one will understand what is happening to me, and no one will stand up for me like I will. I MUST ADVOCATE FOR MYSELF AT ALL TIMES!!! (As do each of you reading this!)

-I wish someone would have told me that anytime I go to the dr or the ER with a pain related issue that I am most likely going to be treated like a DRUG SEEKER!  Whether I am or not. The drs don’t care. They just go off what they see before even talking to the patient!!!

-It would have been great to know that many of my friends and some of my family would turn their back on me and simply walk away! Because they don’t understand the changes in my life or just simply can’t handle it.

-I wish someone would have prepared me for the pain I would feel, not only from Lupus & Fibromyalgia, but also from Interstitial Cystitis and Endometriosis!

-I wish I had been prepared for the fatigue that Lupus brings on. It’s not like any fatigue I have felt before. It can honestly be totally disabling.

-I wish someone would have prepared me for the cost (even after insurance) that I will have to deal with and pay out of pocket.

  -I wish people understood that exercising and eating better will NOT cure my conditions.

  -I wish someone would have prepared me for how hard it is to keep a full time job doing the things you like once you are diagnosed with a life changing disease!

-I wish someone would have prepared me for all the dumb questions I get based on my conditions. I know people mean well, but their delivery could definitely be worked on.

– I wish someone would have prepared me for all the conditions that would come along after lupus. I had no idea that once Lupus came into my life that he would then invite all of his unwanted friend.

This is just a list of things that was combined from a poll Results from a questionnaire in an autoimmune support group, along with my own thoughts. I know many of you feel this way and could contribute many more points to the list. I hope you enjoyed reading this and it made you think about all the things that you have to deal with. Please feel free to share this with friends, family or others who suffer with chronic illness. And always remember YOU ARE NEVER ALONE IN YOUR JOURNEY!! There are always many of us out there willing to help and talk you through any struggle!!

With Love,

Amber

Unrest – Movie Review

This week I was contacted by Jennifer Brea about a movie she has done about living with ME/CFS. She asked if I would be willing to Screen the movie she had produced and then review it here. After looking into the Project I decided that I would be glad to preview the movie and provide a review of the project for all to read.

Unrest is centered around Jennifer Brea and her fight against Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), most commonly known as Chronic Fatigue Syndrome. She discusses how the condition has affected her life, about diagnosis and did many interviews. She interviewed others who also have the same diagnosis, Doctors who have worked with patients and the condition. As well as talking to her spouse about how she felt she wasn’t the spouse he deserves. This movie is SO relatable, there were so many times I caught myself say “Yes!” or nodding my head in agreement to what was being said. Its the most real and true Production I have ever seen. She shared more of her bad days, unlike other films who only talk about said BAD days. You became very invested in Jennifer and her friends also with CE/MFS. I cried with them when things didn’t go their way and cheered when they had good days. I recommend this movie to all with chronic illness, and their families. I also feel like it should be shown in nursing schools and Med School so those who will be providing care will actually know what this condition is and not treat those who have it like a person with a mental illness. I feel like everyone could learn something from this movies.

I am waiting to hear from Jennifer Brea as to when this will be out for all to see and also as to if I can do a little interview of her for you all. I will let you know when I know more. But be on the lookout for this in a theater near you. Below are some of the reviews that have been done of the movie. As well as the synopsis of the film written by Jennifer Brea or her team. And Below that is the link to YouTube so you can watch the trailer.

• “Astonishing”– BBC
• “Brilliant” – The Daily Telegraph
• “Riveting…equal parts medical mystery, science lesson, political advocacy primer and even a love story.” — San Francisco Chronicle
• “Remarkably intimate, deeply edifying and a stirring call to action…an existential exploration of the meaning of life.” — LA Times
• ★★★★★ “A sensitive, powerful documentary” that’s “compulsive viewing.” — BritFlicks
• “An intimate essay” that even feels like “a suspenseful thriller” and “packs a significant emotional punch.” — The Spectator
Synopsis:

Jennifer Brea is an active Harvard PhD student about to marry the love of her life when suddenly her body starts failing her. Hoping to shed light on her strange symptoms, Jennifer grabs a camera and films the darkest moments unfolding before her eyes as she is derailed by M.E. (commonly known as Chronic Fatigue Syndrome), a mysterious illness some still believe is “all in your head.”

In this story of love and loss, newlyweds Jennifer and Omar search for answers as they face unexpected obstacles with great heart. Often confined by her illness to the private space of her bed, Jen is moved to connect with others around the globe. Utilizing Skype and social media, she unlocks a forgotten community with intimate portraits of four other families suffering similarly. Jennifer Brea’s wonderfully honest portrayal asks us to rethink the stigma around an illness that affects millions of people. Unrest is a vulnerable and eloquent personal documentary that is sure to hit closer to home than many could imagine.

Until you are able to watch the movie in full here is the trailer that has been released: 

I hope that if you are able to watch this movie that you gain as much from it as I did!!

Amber

Epilepsy, The System Shocker

What is the first thing you think of when you hear the word “Epilepsy?” What about “Seizure?” Normally, people think of someone on the floor convulsing. What they do not realize is that there are over 40 different types of seizures; some of these you will never know the person is having that seizure unless you know exactly what to look for. Unfortunately, that person will know and feel the after affects for sometimes and hour or days to come even with medicine.

Simply put, a seizure is a disruption in the brains electrical activity. Think of the electrical current being sent to a lightbulb, when that lightbulb flickers or goes out for a few seconds, that is a seizure. Epilepsy, is a recurring disruption of the electrical currents between various lobes.

Roughly 65 Million people globally have Epilepsy with 3.4 Million of those being Americans. There are approximately 150,000 new cases diagnosed in the United States each year. What is perhaps the most disheartening, is that 1/3 of all of those with Epilepsy, do not have a controlled case because there is not a current therapy that is effective for them. That is 21.45 Million people that live with uncontrolled seizures. Common triggers for seizures include lack of sleep, hormone changes, flashing lights, stress, particular foods, certain medications, alcohol or drug use, missed doses of medication, and low blood sugar.

Living with epilepsy is not easy. There is always a sense that you are walking on a glass bridge that has a thousand cracks, and a ravine of jagged rocks is there waiting to catch you. When my seizures returned, there was a new level of violence to them that I had not experienced. Previously, I had polite petit mal seizures. I just stared into space for a few seconds. This time, I would convulse for thirty minutes, as EMT’s and Doctor’s would struggle to get the lifesaving medicine into me. I would then wake up and be exhausted, have no concept of hours or days before having lost memory, and then the bruises from the actual seizure itself. I have never been beaten by another human being; however, when the police ask you if the domestic violence officer needs to come to you home, and your only choice is to show the very worried officer your hospital discharge papers you start to realize just how strange this new world is.

There is a fear of how people see you. You get nervous going out because unless you are with a “safe” person, what if something happens and your friend does not know how to handle the situation? Epilepsy is yes a physical disease; however, it is also a psychological warrior in that you have to plan for it.

When newly diagnosed with epilepsy, the looks of fear, anxiety, helplessness, what do I do if, did she do something to deserve this, is she demon possessed (yes in 2017 that is still asked), I will just stay over here because it is better not to get to close, and a thousand other glimmers that float across people’s face become a burden and a stress to bare. As the patient, you already struggle with understanding how your own life is changing. First, you are trying to understand what your own body just did to you. Second, you have the emotional fallout and instability. You actually go through the 5 stages of grief. Third, you then try and understand your seizures, triggers, if you have a tell or aura, you keep that log and try and find anything or everything that helps. Fourth and finally, you begin to step out into the world and realize that no matter what somehow you will overcome this.

The medication cocktail search may be easy or it may be hard, the sense of humor that will develop will be disturbing to those on the outside, I mean hey how many people get to have a lightning storm in the brain?

Sources:
Epilepsy Foundation of America
https://www.epilepsy.com/learn/about-epilepsy-basics

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

    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/

    My Story/Self-Advocacy

    Self-advocacy is defined as the action of representing oneself or one’s views or interests.  Advocating for ones-self becomes imparitive when you are diagnosed with any type of Chronic Illness. It’s a dog eat dog world out there and sadly no one but you can ever truly stand up for what you believe in!! And to get the proper care and treatment for your condition. 

    It’s just been in the last couple of years I have learned just how important this topic is.  I learned the hard way through years of drs appointments and tests and such that if I don’t stand up for me no one else will.  Here is my story. And my journey to advocacy/self-advocacy!! 

    The last couple of years it seems like once winter hits I am sick ALL the time. Bronchitis every few weeks, sinus infections. All fun things. Since the end of December I’ve had Influenza, bronchitis twice, a sinus infection and now pneumonia. Damn low immune systems. I feel like if someone looks at me who is sick, I then get sick. I am so over it!! I just want a few weeks where I can breath, and not sick during the winter!!! Is that too much to ask? 

     Surprisingly, (or not really surprising As it takes forever to get diagnosed) I wasn’t diagnosed with my first autoimmune disease until I was 26. Looking back at my childhood and teenage years I was so sick all the time. I can remember my friends and boyfriend always asking me why I was sick ALL the time. My answer was always just “I guess I have a crappy immune system!” Little did I know it was really true. I can remember during my sophomore year being diagnosed with Mono and it lasted SIX months! Who has mono for SIX freaking months. Only me!! I also remember during that time having such bad pain in my arms and legs during that time. And was just told oh it’s probably just the Mono. Knowing what I know now that was my first real Lupus flare. Nothing was ever done to follow up on that and it was all forgotten. 
    Also during my sophomore year in high school I also started having tremendous headaches that could last up to two weeks. Light sensitivity, sensitive to smells and noise. And again those were just brushed under the rug! Along with the constant belly pain I started having in 1999. They have checked my appendix so many times and it’s always fine. So I became best friends with Advil and the heating pad. At the time I was too young and lacked the knowledge to stand up for myself and really advocate for me. 
    Fast forward many years and I landed myself in the hospital in Feb 2012 for a week. Once again another respiratory infection. But this one was different. It wouldn’t let go!!! I was in the ER two days in a row and they kept telling me it was just anxiety. But, the last day in the ER I said I wasn’t leaving until I saw a hospitalist and was admitted. And admitted I was!  They never could pinpoint a diagnosis, so I was discharged on high dose steroids for several months. As well, I was out of work for several months. And still no diagnosis. During this time somehow I was also diagnosed by interstitial cystitis. Which could have been some of the lower belly pain I was having. 

    Finally, in June 2016 I had an ANA come back positive and was sent to a rheumatologist. Who finally diagnosed me with Lupus and Fibromyalgia!! It was scary but I was so very happy to finally have a diagnosis. It was at this point I learned about being a self advocate even more. The Rheumatolgist and I didn’t see eye to eye and I was forced to learn to stand up for me, in order to get the care and treatment I needed. If I didn’t advocate for myself I would have never gotten the treatment I needed. 

    In November 2011 I was diagnosed with endometriosis by having surgery. This was the cause of my abdominal pain. Another time in my life I had to advocate for myself. The dr at the time didn’t want to do surgery and just wanted to continue on with birth control as treatment. But I was tired of living in pain and if having surgery could help I wanted it DONE!!!! The surgery did show my endometriosis and relieved my pain for about two years. I only got that surgery bc I advocated for myself!!
    Fast forward again to Feb 2016, I had my first hemiplegic migraine and was hospitalized.  They thought it was a stroke and was treated as such. But they just continued to get worse and the symptoms intensified. All while my adrenal glands were slowly starting to fail, making everything worse. I was getting no answers at my local hospitals so I demanded a referral to Mayo Clinic. That appointment didn’t prove to be very helpful. And I was forced to quit my career to take time off. The last thing I ever wanted to do. But it was necessary. I listened to the drs and took six months to get better. And at this point I am better and trying to go back to work. 

    Had I not stood up for myself over the years and demanded better treatment I may have never have gotten the treatment I got now. And now I spend time reminding others the importance of self-advocacy.  And providing them with information on how to do so.  

    Here are Ten Tips to Self-Advocacy

    1. Believe in you. 
    2. Take time to research and learn your rights. 
    3. Make sure to bring up and discuss your questions and concerns. 
    4. Make sure that you are effective in your phone conversations. 
    5. Never hesitate to put your concerns into writing. 
    6. Get information about your conditions and decisions about your care in writing. 
    7. Use the chain of command when filing a complaint with your dr it the hospital. 
    8. Know your appeal rights and responsibilities!
    9. Follow up and say Thank You. 
    10. Never hesitate to ask for help. 

    I hope that my story somehow inspires you. And you can learn a little bit about how to stand up for yourselves.