Trauma, Stress and Chronic Health Conditions

"Scholars have long known that people who live with chronic illness are at a greater risk of experiencing PTSD-like symptoms. However, the trigger for these symptoms is not a one-time event that occurred in the past; rather, chronic disease is an ongoing threat to safety. Researchers thus have proposed a model of PTSD that accounts for this difference entitled the Enduring Somatic Threat ("EST") model of PTSD." (Virant, K.W.)

I have been living with diagnosed chronic health issues for almost 10 years, but the pain and emotional turmoil that comes with chronic health issues started years before, when the symptoms first began but we didn't know why they were happening.

Nine months ago, when I had surgery for a J Tube to be placed, I had no idea the emotional and physical trauma that would come with it. Sounds silly to say that statement out loud. In fact, I almost question myself for saying it. I mean, it's a physical object coming out of your stomach, why wouldn't there be physical tand emotional trauma? Maybe I was just in denial. At the time, I was looking at the feeding tube being another side effect of a new chronic illness diagnosis. With every new diagnosis, you face new challenges. The feeding tube was never supposed to be permanent and in the beginning, I kept telling myself that. The feeding tube was just something I needed to deal with while we figured things out. Needless to say, that as the couple weeks to a couple months my doctors expected me to have the feeding tube turned into months, my hope diminished.

You don't have to have something coming out of your stomach for you to experience trauma or develop anxiety. For years, I have dealt with chronic illness and I know there are certain situations that I feel I sometimes need to mentally prepare for. Although, the feeding tube is what pushed me to realize all of the trauma I have dealt with for years.

For the last 9 months, I have been living with a feeding tube coming out of my abdomen. To say that brought physical and emotional trauma would be an understatement and I never would have realized it affected me so much, until I was told my feeding tube was being pulled. For the last 9 months that is all I wanted, to have my feeding tube pulled. The second I was told let's try and start eating and we can have your feeding tube pulled in 3 weeks, I started panicking.

"Wow 3 weeks. That seems too fast. Shouldn't it be longer? After all, I have to try a variety of foods. What happens if it gets pulled too soon and I have to do this all over again? All I have wanted it to have this thing out and now I'm terrified why is that?"

To say my mind was racing is an understatement. The first time I went to the grocery store to figure out what I was going to eat, I started crying in the middle of an aisle. I didn't know what I was supposed to eat or where to start.  Anxiety is real and the stress and trauma of having a feeding tube finally pushed me into admitting the truth: Chronic Illness is traumatic, and can cause severe anxiety and stress.
Anywhere from 12-25% of people with chronic illness have developed medically induced PTSD. Unfortunately, I am now considered a part of that statistic. When I was first told I have PTSD, I hated that it had even been brought up. I felt (and still do) that there are other people who have been through so much worse than I have, maybe they have PTSD but I don't. I'm just dealing with a little anxiety.

For some with chronic illness, the trauma they face is not so much about their illness but about the people around them and whether or not their family and friends actually believe them when they are going through this terrifying issue. For others, it's the actual effects the illness has on their lives.  I have met people who are terrified to leave the house, what if they pass out and wake up in an ambulance? Or what if they aren't close enough to the bathroom when they need one?

Medically induced PTSD means our trauma is coming from our own bodies and our brains don't perceive our bodies as a safe space. Re-experiencing is a mental version of re-living the trauma you are experiencing. For a soldier, it may be a loud noise after he or she is back from war, could trigger their PTSD. For someone who has medical induced PTSD, they are re-living their trauma everyday. It's hard to escape it when your chronic illness affects you daily life. Sometimes to escape that trauma, those with chronic illness will avoid taking meds, doing their therapies or going to doctor appointments because they don't want to deal with the anxiety associated with it.

I'm not going to lie and say that the last statement above doesn't apply to me. In fact, when I first got the feeding tube I kept asking my mom if I had done this to myself. I had been experiencing pain for awhile and just didn't want to deal with going to the doctor only to have him tell me that my pain was just a flare that I had to wait out. Had I done this to myself? Well, of course not, but it's hard to not think like that.

For me, my health has always gotten the better of me, but I have always tried to remain positive with each new diagnosis and figure out what this change means for my life. With the feeding tube being pulled, you would expect excitement. Instead of a new diagnosis, I was "catching a break" and getting the opportunity to experience relief from one of the most trying things I have experienced in my life. However, just because my feeding tube was pulled, I'm still having multiple doctor appointments a week, and now I'm having to try and eat food. Something that put me in the position of needing the feeding tube in the first place.

Since the feeding tube being pulled, I have realized just how much chronic illness has affected me. In the past, every time I thought I had my life finally figured out with my health, all of a sudden the rug would be pulled out from underneath me. Now that my feeding tube is pulled, I'm having a hard time looking for the positive; and instead, I am just waiting for the other shoe to drop.

My daily life now consists of one meal a day. I usually can only handle one small meal and I'm pretty full for the rest of the day. I also now walk 3-6 hours a day and see multiple doctors and physical therapists a week. I thought having the feeding tube pulled would mean the doctor appointments would slow down but they haven't. The walking was to help me maintain good digestion. I was up to between five and six hours of walking a day and I have slowed down. But I haven't been able to bring myself to come down lower than three hours of walking a day. I am absolutely terrified of what is going to happen if I go below three hours and start having problems again.

So, I'm going to end this post with something I have said before, and I promise I will say again...Just because you can't physically see something wrong, doesn't mean the person you are looking at isn't fighting an inner battle. Be kind to each other and think before speaking.


I encourage you to read more on PTSD and Chronic Illness in this article from Psychology Today: Chronic Illness and Trauma Disorders.

Source: Virant, K.W. (2019). Chronic Illness and Trauma Disorders. Psychology Today.

Be Kind To Others. Be Kind To Yourself.

Over the last few months of 2019,  a majority of my friends began posting photos and comments associated with each photo for the "Decades Challenge." For those of you unaware of this challenge, it just means that there were several people who posted a picture of themself in 2009 to show where they were when the decade began and the hopes and dreams they had for their lives, and then they also had a picture from 2019 showing where they are now, what they accomplished and/or built up in the last 10 years of their life.

As happy as I was for my friends (and still am), I found myself jealous, not because of their accomplishments, because I am so thrilled for them. I was jealous because they had the OPPORTUNITY to work towards those accomplishments. Meanwhile, I was never given the chance to have that same opportunity. Furthermore, while I was looking at these "Decades Challenge" posts showing my friends accomplishments in their personal and professional lives, I was sitting next to an IV pole with a feeding tube going through my abdomen into my intestines to provide me with the necessary nutrition I need to survive. Something my body couldn't do on its own. 

The milestones in my life are drastically different than my peers. My best friend got engaged on the same day I had a surgery. Meanwhile another friend had a baby while I was getting yet another CT scan because we didn't know why the pain hadn't gone away with surgery. I get that life is supposed to challenge you; however, to me, it felt like my life was out to get me and the more I saw the "Decades Challenge" posts, the more I thought about everything I was missing or had missed in the last 10 years. 

So, here's my "Decades Challenge"...

Me in London in 2009

In 2009, I was in college. In fact, I was studying abroad in London. I was loving every minute of it and had even surprised myself with the simple fact that I had taken a risk to go there on my own for several months at a time. Taking big chances has never been something I have been known to do. While there, I made new friends, people I still stay in contact with today, and traveled to different countries to experience different cultures and see the world. Short of getting the flu, or being a huge klutz (which still followed me to London unfortunately), I hadn't dealt with a serious and personal attack on my health. 

I had been experiencing random pains my first semester of college in 2007, but by 2010 I was definitely sure I was dying. The word miserable doesn't begin to describe how I felt. And that is when my health journey began. Everything came to light in 2010 and by 2019 I had been diagnosed with 11 chronic illnesses in 9 years, making 13 the total number of chronic illnesses I now have. While my friends were advancing in their careers, settling down, getting married, having kids and even buying their first homes, I was having surgeries, multiple procedures, blood draws, fights with insurance and enough doctor appointments to fill well over five lifetimes. I was, and still am, fighting for my life. 

Me after taking meds through tube feeding September 2019

It's hard not to think about what you are missing, or should have done when you had the chance while lying in bed for months on end, not able to do much. I worked when I could and did everything possible to prove to myself, my illnesses and everyone else that I wouldn't take my illnesses lying down. But I have to be honest, 2019 knocked me flat on my back and made it feel like I would never be able to get back up. And for me to be honest with myself,  I need to admit that I didn't want to get back up. I didn't have any fight left in me. In fact, I told my mom I was ready to give up and I have never been more truthful in my life.

So, here's my response to the Decades Challenge: 

My health has kicked me while I am down more times than I can count. While I was once a shy, but motivated young woman, I am now strong emotionally, mentally and in my faith, have found my voice and learned how to use it, and have found ways to love myself and my body despite the number of times it has revolted against me. No, I don't have a house, kids or the job I always dreamed of, but I have still accomplished things my healthy friends have. Like my friends, I have grown and learned a lot about myself and my strengths and weaknesses along the way. I've learned that while my friends can go do something fun all day, it is going to take a lot out of me and if I try to keep up with them then it will put me into a huge flare and keep me in bed for at least a week. I've learned it is okay for anyone, not just those with chronic illness, to take a break, rest and try again the next day. 

Credit: The Minds Journal

Fast forward to now, it's the beginning of the year which means people are making New Year's Resolutions and while most make personal goals to improve what they are doing, keep the house cleaner, go to the gym more, or have less screen time and more time with family. My health has taught me that life is short and hope, health and happiness can be taken away all too quickly. 

I know you have heard something similar a million times, but I'm going to say it anyway. Remember that just because someone looks healthy and happy, doesn't mean they truly are. They may be secretly fighting a battle on their own. And just because I am more than willing to be open about what I go through and hopefully stop the stigma associated with chronic illness, others are more reserved and you would never know. 

So, while making your New Year's Resolutions remember to include this one: Be Kind (thank you Ellen DeGeneres) and be generous. Think before speaking. Think before acting. You may be annoyed and think someone is taking advantage when they park in a handicap spot and walk into a store without mobility aids, but you don't know what they had to do just to get to the store that day and how much they are going to pay after. Taking it a step further, for those going through hard times (and even those who aren't), remember to Be Kind to yourself. 

"It's a little strange to actually get an award for being nice and generous and kind, which is what we're all supposed to do with one another. That's the point of being human."

-Ellen DeGeneres

Every Day

Every day I wake up and wish I hadn't.

Strong statement, but it is 100% true.

Let me be perfectly clear, I am NOT suicidal, but I am in pain. Constant pain.

While I would love to tell you this is something that I only think on bad pain days, the simple fact of the matter is that, for me, (and others with chronic illness), the pain and long list of symptoms do not go away. Instead, those symptoms are constantly present reminding me, that I do have a chronic illness.

And, it is just exhausting. It's exhausting to fight your own body everyday to do simple tasks, including just to get out of bed. I often make deals with myself to get me through tasks that would be nothing to a healthier person..."Okay, if I get up and take the shower I desperately need, then I can lay back down and sleep for a couple hours." While the physical symptoms are exhausting, the mental and emotional side effects aren't any easier.

While the physical symptoms of chronic illness are extremely hard to deal with, the emotional and mental effects chronic illness has on a person are just as hard, and some days worse than the physical symptoms. You begin to wonder things that people don't usually question. Am I a burden on my family? What happens when my family isn't here to help me out anymore?  What more can my chronic illness do to me?

Those questions seem silly, maybe even a little out there. But I can tell you from experience, these questions and many others invade the thoughts of people with chronic illness frequently because every moment of their day revolves around their chronic illness. On top of that, while chronic illness can drastically affect a person's physical life, sometimes these questions and other thoughts can be even more detrimental to someone than some of the symptoms of the chronic illness itself.

So, while I wake up every day and wish I hadn't, I still fight back. Every single person with chronic illness does. That's why we are called Warriors.

Thank You

So, you’ve done it again. Congratulations. You pulled the rug out from underneath me; and as I sit here crying about the latest development in my string of constant health issues I want you to understand that while you have surprised me yet again, no matter what, you will not win. This is my life and no matter how many times you throw me for a loop emotionally, mentally, and physically, you will not get the best of me. You will not win.

I think this all too often. Saying it to myself, but, honestly, also to my chronic illness, POTS. Sometimes it helps to say it out loud. To hear myself say that I need to keep fighting…

You see, while POTS has taken so much from me, it has also given me a few things. Surprised to hear me say that? I was too the first time the thought crossed my mind. In fact, I thought I was crazy. But, if I am truly honest with myself, the truth of the matter is that while POTS has wreaked havoc on my life and all the plans I had for it, it has also given me so much more. 

It’s hard for people who haven’t dealt with chronic illness on a daily basis to understand that thought process. After all, what person in their right mind would say a chronic illness has given them things besides pain, heartache and bouts of depression. Personally, and I hate to say this, but this chronic illness has completely changed how I imagined I would be living my life and some of it is actually for the better.

You see, in the beginning, after I developed POTS and was given a name for it, I almost felt a sense of hope. After all, I had a name and an explanation for what was happening to me. A reason for why I felt so ill and why I couldn’t get out of bed too quickly, or stand too long, without passing out; and, while everyone has different stories of how they came to be where they are with their chronic illness, for me it wasn’t until a few years after my official diagnosis that I realized my life would never be normal. It would never be like I imagined or like anyone else’s my age. Just because I had a diagnosis didn’t mean I was going to get better. When I finally realized this fact, I also realized I had two choices, to lay down and let this illness get the best of me or to do what I needed to do to survive and live my life as best as possible. I refuse to let POTS win and to do that I need to recognize the ways it has help me improve myself, so I don’t constantly train my brain to hate myself every time something bad happens. 

Having a chronic illness has helped me become more vocal and clear on what I need. Before I got sick, I didn’t speak up to say what I needed, I let people do what they want or had someone else say what needed to be said. Since developing POTS, I have learned to speak up. I have learned that I know what is best for my body, and my life, so I have learned how to tell nurses, doctors and anyone else, what I need, not only for my health issues, but for my life in general. 

So, thank you POTS. 

Yes, POTS is constantly throwing curveballs. My week is never a completely straight line. Nevertheless, when those curveballs do get thrown at me, I have a few great friends that are there to listen to me. Of those friends, one of them I met because we have something in common, she has POTS too. I know that when she texts me to say, “Hey. How are you?” I can be completely honest with her. I don’t have to sugarcoat how I have been doing because I know when she responds and says “I’m sorry I know what you mean.” She TRULY knows what I mean. After all, she is going through everything I am going through. Don’t get me wrong. I don’t want anyone to go through what I am going through. In fact, I would not wish this life on my worse enemy. However, it is nice to be able to talk to someone that knows EXACTLY what I am going through. Someone I can be truthful and honest with. And I strongly encourage anyone with a chronic illness, not just POTS, to reach out to other members of their online support group (and yes we are all a part of one) and make a friend with someone in the group. Having a friend who is gong through what you are going through is a great feeling and can provide you comfort on a whole other level. That being said, if you don’t feel comfortable reaching out to someone out of the blue, reach out to me. I could always use more friends. 

So, thank you POTS.

I have been diagnosed with POTS for years; however, I wasn’t told about the Levine Protocol and how certain diets might help the symptoms until about three years ago when I switched doctors. Since being put on the protocol, I’m slowly gaining muscle back and I am eating healthier than I ever have thanks to all the random foods that I can no longer eat since it might exacerbate my symptoms. While it seems weird to say this because my body does not feel healthy at all, I pass out weekly, and I can’t even workout every week, my muscles and my diet are so much better. I actually can see muscles on my arms again. 

So, thank you POTS.

POTS has also helped me find a career path I never knew I would be good at. I cannot hold a full time job so I have worked to find something I can do from home. For me, working from home has been a great solution. It’s the only way I can truly have any sort of job and still take care of myself. I definitely can’t support myself working from home, but I will keep trying to work as much as I possibly can. Due to the fact I can only have a job that allows me to work from home and set my own hours, I have discovered that my passion for writing can actually be a viable career path. I am now a content writer and while I can’t support myself, I can at least feel like I am doing something to contribute and feel a little independent and involved in my own life. More than I would like to admit, I am reliant on those around me for some help. But more than that, writing takes me away from everything I experience as a POTS person. The pain, the negative thoughts and the constant worry of what will go wrong next. Writing is my escape. 

So, thank you POTS. 

The most important thing my illness has given me is a relationship with my mom. That’s not to say I didn’t have a great relationship with her before my diagnosis. My mom and I have always been close; however, now my relationship with her is on a whole new level. She is MY person, my cheerleader, my shoulder to cry on, my best friend. She drops everything to help me, by sitting through doctor appointments on her days off, staying up with me when I am sick and even using vacation days to take me to doctors in other cities if necessary.  When I was 27 I had to move back in with her. It was no longer safe for me to live on my own because I was passing out so frequently. I felt so pathetic. I mean I was 27 and having to move back in with my mom. But she made me feel less pathetic about it, and welcomed me back home with open arms. My relationship with my mother is what I am most thankful that POTS has given me. My bond with her is so much stronger than its ever been, I am not entirely sure what I would do without her. She is my rock and if I have be thankful for POTS at all, I will gladly send POTS a thank you note for the time and memories I get to spend with her, even if some of those memories are filled with images of hospitals, doctors offices, and lots of needles. 

So, from the bottom of my heart, thank you POTS. 

So yes, POTS can be a real pain in the butt. And NO I would not wish this on my worst enemy. However, if I have to be stuck with a chronic illness, I have decided it is time to make the best of things. I refuse to let POTS win. For me to beat POTS, I need to acknowledge that this is my life and while it is not the life I imagined for myself, and I am sure it is not the life my parents imagined for me, at least I still have a life and I am determined to make the most of it. To do that, I need to find the positive things in my life to help get me through my day-to-day activities and keep fighting and moving forward as much as I can. I won’t say it is easy, but I encourage everyone with POTS to do the same. 

Lets Be Honest

Lets be honest...having a chronic illness sucks.

Sorry to be blunt, but honestly, there is just no other way to eloquently say that.

Not knowing how the day is going to go. Sucks. Taking pills and handfuls of salt before getting out bed. Sucks. Being exhausted just from getting yourself out of bed. Sucks. What else is there to say?

When you have a chronic illness, you go through a love/hate relationship with it. You learn to love it because it is your new way of life, but it does not mean that you don't have days where you just absolutely hate it. Honestly, who would love it just because they want to? I have learned to be okay with it, but I still have my occasional days where something from my personal or professional life is affected by having a chronic illness, and I just hate everything about it.

When I met my current POTS doctor, he told me I needed to be okay with myself when I had an episode, or just any rough day. At the time, I remember silently screaming, "Are you kidding me?! My body revolts against me on basically a daily basis and you want me to be okay with it?!!" I mean, who wouldn't be angry when they keep passing out or missing out on their life because a chronic illness has slowed them down?

However, my doctor has done this a time or two before, and I am pretty sure he knew what I was thinking, because his next statement was, "You are training your body to shut down and be upset every time you have an episode and you can't do that because this is your new normal." I left the appointment with a list of books to read to help me change my attitude and with some notes from my doctor. Bullet point number one was for me to start practicing positive cognitive behavior for any negative thoughts. At the time I remember joking with my mom saying I should just wear a rubber band on my wrist and for every negative thought I had, I should just snap the rubber band. We laughed about it, but of course there was some truth to the fact that I needed to learn to deal instead of just being upset.

I read all the books recommended by my doctor plus books that I thought would be interesting to help me deal with my chronic illness. The one book that did help me was a book called, How Can You Not Laugh At A Time Like This by Carla Ulbrich (the Singing Patient). She has several chronic illnesses and therefore has a different outlook on dealing with chronic illness and she kind of helped me start to be okay with my health and adjust to my new life living with chronic illness. I encourage you to read it.

Since that appointment with my doctor telling me I need to change my attitude (and reading everything I can on dealing with something like this), I feel that I really have changed my outlook on my life when dealing with POTS. The issue for me is, my life feels very stalled. One of my bigger hurdles that I face is my personal life. Whether it is making plans with friends, meeting new friends or going on a date. I have to really plan out my day before that night so that I have the energy to go out, even for just a couple hours. Or more than that, if I am on a date, when do I tell the person I have this chronic illness that affects me daily. Or the bigger question is, should I forewarn that person that I can't stand too long, but finish that statement with, "Don't worry, if I pass out, I will wake right back up as soon as I am on the ground." It sounds hilarious when you write it out like that, but it is frustrating that there is so much truth in just that one sentence. And that specific sentence can terrify someone who has never been around anyone with a chronic illness. While that is my biggest hurdle, others in my support group face other issues. For instance, the parents in my group, have to learn how to save their energy to spend time playing with their kids and spending time with their family.

Since my illness has gotten worse, I have learned three big things: 1) I will always have a love/hate relationship with my illness; 2) It is important to find your own way of coping with a chronic illness; and 3) While having a chronic illness is not fun, it helps you find an inner strength in yourself that you might never have found if you hadn't been diagnosed with said chronic illness.

So, yes, having a chronic illness sucks, but it is how you learn to deal with your chronic illness that helps you get through it. You have to learn to separate yourself from the people that just cannot deal with your illness. It doesn't matter if they are friends or loved ones, their negativity towards you and your illness poison your own mind and body and will have an overall affect on you.

So, my final thoughts are: Be true to yourself. Give yourself a break. It's okay to have negative thoughts every now and then; and Always remember to celebrate the small victories that you have each day, whether it is going to the store, hanging out with friends, taking your dogs on a walk or even just getting out of bed. Because while those may be trivial things for a healthy person, they are huge victories for a POTsie or anyone with a chronic illness.

So, let me tell you about last night...

So, let me tell you about last night...

I set fire to a grill. Not a normal fire that you would expect to see when grilling, but a fire I wasn't sure we would be able to control.

Let me explain. My mom has a grill that can also be a roaster or a smoker, it's official name is The Big Easy. She keeps the accessories for it inside the grill and when we go to grill we just take the basket out before turning on the grill. Unfortunately, I forgot to do that last night and I ended up creating a huge fire because the stuff inside was burning. Every time we opened the lid, the air from outside would just fuel the fire more. Eventually, the fire did die down, but the whole incident opened my eyes to the seriousness of brain fog.

Obviously, last night was terrifying and overall very upsetting. For lack of a better word, I feel stupid (even though I know it isn't necessarily my fault). I just keep thinking about how I could forget to take the stuff out of the grill when I have been doing it for years. Two words. Brain Fog.

Brain Fog or the more medically appropriate term, cognitive dysfunction, is the loss of brain function when it comes to thinking, remembering, reasoning and concentrating on a daily basis. Vanderbilt University's Autonomic Dysfunction Clinic has found that 80-90% of POTS patients suffer from brain fog.


It is important to know, POTS patients are not the only ones who suffer from brain fog. In fact, most chronically ill people suffer from some sort of brain fog with different degrees of seriousness. An even more interesting statistic is that a completely healthy person can suffer from brain fog. However, when brain fog happens to a healthy person, it is exhaustion and it is excused. For people suffering from POTS, studies have shown brain fog can happen from prolonged standing (and sometimes prolonged sitting), dehydration, fatigue, lack of sleep and fainting.

Up until last night, brain fog wasn't really something I worried about. Of all the POTS symptoms I tend to deal with on a daily basis, brain fog has never affected me too much. The only issue I have ever noticed was I would not remember talking to my mom about a specific topic. Suffering from memory loss, forgetting safety issues or having trouble functioning on a daily basis has never been an issue with me and my experience with brain fog. In fact, most POTS people I know laugh at brain fog and talk about the funny incidents that have happened when trying to interact with their family and friends. The fact of the matter is, chronically ill patients go through so much you have to be able to laugh when you can at silly situations.

I'm lucky. I'm lucky to have a mom who is understanding and knows what I am going through. I'm very fortunate the fire did not get any bigger than it did last night. I am blessed to have a neighbor who is a firefighter and could come check out the fire. ;-)

I didn't write this post to scare anyone. I wrote it to inform people. Like I said in previous posts, I want to share what I go through so maybe other chronically ill people can know they are not alone in the sometimes daily trials that people with chronic illness can go through. The fact of the matter is, I have been doing fantastic health wise. Of course I am going to have a few setbacks, and I am going to go ahead and count last night as my one set back for the month. Brain fog is a serious issue and I hope I have helped shed some light on the subject so those newly diagnosed with a chronic illness and their loved ones will know it is not an uncommon issue.

Why?

Why is this happening again? Why me? How am I going to do today?

These thoughts are what I think about on a daily basis, at least 10 times a day. Back in November, I wrote a post in this blog about how far I have come along since my first surgery 5 years ago. To look at me now, you would never know I ever got any better. To be honest, I think you would wonder why I ever thought I was better.

I have Postural Orthostatic Tachycardia Syndrome (POTS). Dysautonomia International defines POTS as a form of orthostatic intolerance that is associated with the presence of excessive tachycardia and many other symptoms upon standing. For those of us without a medical degree, that basically is saying the elasticity in my vessels is not there to help push blood from my legs back to my heart, which means the blood pools in my legs and after so much time has passed then I will pass out. Usually, once I am flat on the ground and my legs are on the same level as my heart, I wake right back up.

To try and prevent one of my episodes from happening, I drink at least 130 ounces of liquids a day. I try to make sure a majority of those liquids have some sort of sodium in them because I also have to take six extra grams of salt a day. You know how people tell you to watch how much you salt your food? Ya, that isn't an issue for me because I need all the salt I can get. On top of the liquids and the extra salt intake, I also wear compression socks to help push the blood back towards my heart.

I was diagnosed with POTS several years ago. I ended up being referred to a specialist at Vanderbilt in Tennessee who performed a tilt table test on me to officially diagnose me with POTS. A tilt table test is where you get strapped down to a table and they tilt the table to where you are perpendicular with the ground. Essentially you are standing, but you are strapped down so that when you do pass out you don't fall down because you are strapped to the table to keep you up. During this test they take repeated blood pressure and heart rate readings. If your heart rate jumps more than 30 points then you have POTS. After all of this, I was put on medication and I learned my limitations for dealing with this issue. No one would know I had this particular issue, unless I fainted from pushing myself too far.

Like you have probably read from my other posts in this blog, I have other health issues. Every time I start having stomach issues, or any other health problems, my POTS gets out of control. When that happens, I know I need to go get checked out. Last spring, my stomach started hurting every now and then, but I just dealt with it and moved on. In the fall of last year, I reached my breaking point. I started going back to the doctor and doing the necessary tests to start ruling issues out and work towards a diagnosis. At some point, my doctor felt the next step for me was to go directly to the Emergency Room. He was worried about my kidneys and if they were working properly. Of course, the ER was much more concerned about all my episodes of passing out than they were with my kidney function. Because the tests they did ruled out any issues with my kidneys.

Fast forward to now, I am back in St. Louis living with my mom. I sleep in the same room as my mom, and rarely drive because my POTS is out of control and I no longer get the warning signs I used to get before I pass out. I rarely drive, because lets face it, that is just a hazard for not only me but anyone else on the road with me. I wear out easy too. If I have plans to go out at night, then I don't do anything during the day. I have to save up my energy to be able to actually put the effort into getting ready, and doing whatever the activity is and still make it home and be able to have enough energy to put myself to bed. I have always had to think through each activity I do during the day to ensure I have enough energy to actually get through my day; but, I was recently just told there is actually a good example for those who don't understand why I can't have a day full of activity. It is called The Spoon Theory. I encourage you to read this if you want to know the struggles of people living with a chronic illness, like me.

The point of writing this post, is not to complain about my issues. Because while I definitely am not the healthiest person on the planet, I know there are people much worse off than I am. I know that everything happens for a reason, and when this medical roller coaster started years ago I thought I had been given these rare medical problems to help shine more light on the rare issues that I was going through. While I desperately wanted to do this, at some point life got in the way. Once I was better, I just wanted to pretend like I hadn't had these issues and actually live a more normal life. The life every other 20 something year old gets to live.

The problem is, I have a chronic illness. There is no escaping it. It is something I will live with for the rest of my life. While I cannot change what I am going through, I can talk about what is going on with me. Sometimes all people need to know is that they are not alone in what they are facing. Sometimes, when going through anything (not just chronic illness), what makes things better is to know someone else out there gets it. So, here I am. Sharing my personal feelings, issues and anger about living with a chronic illness so that maybe I can help one person.

Each post I write, I will end with a silly saying or meme that is about chronic illness (sometimes specifically POTS related) that helps me get through the day...who knows, maybe it will help you get through the day too. Sometimes, all you need is a laugh, and while some people will not find some of these funny...those who suffer from chronic illness definitely will.

Here is today's: