Truth Is...

Truth is I have been posting a lot of "fun" posts and less and less serious posts. I initially started this blog to share my journey with chronic illness, fill in family and friends, have an outlet for myself , and to help raise awareness for P.O.T.S and other types of dysautonomia. I decided that I would be completely honest and share my good days and the bad but I've been having a hard time being honest. It's not that I'm lying but I do tend to omit some most of the "bad days".

 Yesterday I realized that I was a big fat liar when a friend txted me and asked how I was feeling. I automatically went with the standard " feeling pretty good" answer and it wasn't until after the convo ended that I realized that I'm so conditioned to give that answer that I didn't even allow myself the opportunity to tell her what was really going on. Truth is , yesterday was a rough one full of seizures and fevers.I wasn't feeling pretty good , I was feeling pretty awful actually .

Truth is this whole being open thing is harder than I thought it would be.

Truth is I need your help.  What would you like to know about dysautonomia , chronic illness , POTS ect.? Ask away ladies! After all, I started this blog to raise awareness . So from here on out I'm gonna try my best to suck it up and do it :)

On a less serious/more fun note : The 2nd Beauty Bag Goodie Swap signups are only going on for 4 more days! Sign Up Here to join in on the Lipstick madness :)

Staying positive during tough times

So this crazy Pneumonia/Virus/Bronchitis deal is finally starting to clear up but this never ending fever is relentless. I gotta say I'm so done being sick, not my regular daily "sick" but this added virus shit is frustrating the hell outta this girl right here!No matter how sick and tired of being sick and tired  I get , I try my very best to remain  positive because I just think it makes life so much more fun and helps things go smoother.Having a chronic illness is difficult and there are times when I feel overwhelmed with discouragement and sadness.The reality is life doesn't always go our way and if I threw a cry-cry fit every time shit went bad I would be on the road to nowhere fast . I am by no means and expert on staying positive nor am I a psychologist or doctor but here are a few tips for staying positive during a difficult time.I really think that these apply to any one dealing with a hard situation, not just people dealing with illness.

1. Laugh Often: Ok this one may sound super cheesy but honestly it helps. No matter how hard you try to stay mad at someone it is ridiculously hard to do if they can make you laugh right? Right! My point exactly. Laugh everyday even if that means you need to you tube some Twerk Fail Videos like this one. See you just had your laugh of the day....Your Welcome



2. Surround yourself with positives:positive people, positive activities, things that make you feel like you have a purpose. Hanging out with Debbie Downers and people that don't encourage and support you does absolutely nothing for you. On the contrary , people that are willing to listen to you , learn about your illness, and still accept you and love you are people that you need to keep around. Participating in positive activities gives you a reason to get up and the motivation to keep fighting.

3. Replace losses with gains: A big struggle for me since getting sick is dealing with all of the losses that have come my way. If I didn't replace those losses with new things it would be a lot easier to dwell and a lot harder to stay positive. Crafting and cooking have always been things that I enjoy doing but I had little time to do them on a regular basis due to my busy work schedule. My job was a hard loss for me but I have replaced the time with crafting,cooking,blogging,and selling Scentsy. These enjoyable activities replace down time that I would otherwise have to sulk about all of the losses that I've dealt with this year.

Today is Hump Day and I'm linking up with some fabulous ladies thanks to Miss Jasmine!Visit her blog and check out the other ladies while you're there:)

Destruction vs. Defeat

Here I am again stuck in bed with yet another infection and another POTS flare up.I know that I have a chronic illness that will never go away and logically I know that I am prone to illness and infection but I still think about the possibility that some day my body will no longer be this vulnerable. I started getting a little cough and chest cold on Friday and by Monday it had turned into Pneumonia . I just can't help but think when will this ever end ? Days like this I feel absolutely defeated . Like no matter what I do things will never get better. Whenever I feel like giving up I read through the journal that I started while I was in the Traumatic Brain Injury Rehab Center recovering from my stroke. Re-reading it always provides me with the strength to keep going and reminds me of just how far I've come. I have realized that my fragile body and delicate immune system may face destruction on a regular basis but it has not been defeated. Destruction is a physical act but defeat can not happen unless you allow it to. As long as you continue to fight you can never be defeated. I'm going to try my very best to look at future challenges in this way. Thank ya'll for allowing me to share my story and for continuing to read :)

2013 in a nutshell

After recovering from my stroke in 2012 I was really optimistic that 2013 would be MY YEAR. My year to get my life back on track and live like a normal 25 year old. Little did I know that my battle had just begun. As I reflect back on how 2013 went I definitely have more downs than ups but there are also a lot of stand out moments that show my progress. It's the little moments that give me the motivation to keep going and restores my hope that things will get back to normal someday. I may never get back to my old self but being able to recreate old memories and moments even in a different capacity makes the fight worth it . I was able to go to a family friends wedding and even stand up long enough to dance the Cupid shuffle, watch my little cousin perform at an outdoor concert (the perfect venue to lay on a blanket and avoid any health issues),managed to sit outside and enjoy a few of my brothers baseball games, had a few nights out with friends,got to see family and friends from multiple states ,and this year I was able to actually enjoy holiday dinners with my family thanks to my recent POTS Treatment Regimen. My faith in humanity was validated when family,friends, and complete strangers donated over $10,000 in under a month so that I could participate in The POTS Treatment Center program and help pay medical expenses. My relationships with family and friends got even stronger and I started a new business venture selling Scentsy which has given me something to do and  has helped me with expenses while I'm on disability. I started my blog and have connected with some amazing bloggers.So, 2013 may not have been MY YEAR but I'm grateful for all of the opportunities that I've been given .  I hope you all had a great 2013 and an even better 2014!Click here to view my slideshow of 2013 highlights

Treatment and health update

Usually I try to stay pretty positive and not post Debbie downer posts but it wouldn't be a true reflection of my treatment program if I didn't share it all with you . The first week at The POTS Treatment Center went flawlessly, no passing out , I was able to control my heart rate pretty well,and even had enough energy to go on a few outings (with the wheelchair of course). This week,not so much. Monday night my friend and I both came down with what we thought was food poisoning but it turned out to be some sort of flu / viral infection. Getting sick sent me into a downward spiral and after my chest pain and a Heart rate of 170 lasted for about half an hour even when lying down I decided to pack it up and head to the ER. The plan: get some fluids and go home . A few hours later the doctor came in to say that most of my electrolytes were depleted so they were going to replace them in iv form and send me home in a few hours . After the electrolytes were finished running the took a final ekg and discharge vitals but the EKG was abnormal and my vitals were all over the place oxygen saturation 83 (normal is a voice 92ish), blood pressure 75/51(normal is 120/90), and heart rate of 146 (normal is 60-90 although mine is always high when standing but usually in the normal range while lying). So needless to say ,they admitted me . Yesterday and today I have been spiking fevers and my blood pressure is still pretty low so they are going to be keeping me for at least another night, which means I will miss another day of treatment :/ Hopefully I will get out of here tomorrow so I can double up on my sessions at the POTS Treatment Center. That's all for now but I will keep you all updated .

Put a smile on someones face this holiday :)

Holidays are all about family, friends, and celebrating. We often get so caught up in buying and receiving gifts that we forget what it's really all about. We give gifts to put a smile on the faces of our loved ones. Seeing them happy makes us happy. Every year I try to help out by donating to different organizations in order to put a smile on the face of a needy child. My church participates The Angel Tree , an organization that gives gifts to children who's parents are incarcerated during the holiday season. Last year I was able to pull a tag from the Starbucks Tree (help a kid and grab a coffee at the same time..easy as can be). They participate in the  Aspiranet Gift Drive , collecting gifts for kids in foster care.

This year I have decided to give back to people that are in the hospital or struggling with health issues. As a nurse, I always tried to do a little something extra for my patients that were in the hospital during the holidays. Our hospital has carolers that come on Christmas and it really makes our patients feel special. Last year I got a small taste of what it feels like to be stuck in the hospital on a holiday. I was still recovering from my stroke last year and was on the Stroke /Traumatic Brain Injury Recovery Unit when Fourth of July rolled around. I was so sad that I was going to be stuck in bed in the hospital, fortunately it was getting close to my discharge date and I was able to go on a home visit for a few hours to eat with my family and see everybody. This was only fourth of July and I was able to see my family, I can only imagine how tough it is to be hospitalized during the holiday season .

HERE ARE 3 ORGANIZATIONS THAT YOU CAN CONTRIBUTE TO WITHOUT HAVING TO EVEN LEAVE YOUR HOME

Amazon Shoppers : Before making your purchase click on this link. The Amazon button is located at the top right of your screen and you can search any item that you would like ( just like on the amazon site). 4-6% of your total purchase will be donated to Dysautonmia Research  to help fund new research projects in hope of find new treatment options and a cure for those of us suffering from Autonomic Dysfunction. Just search each item on the Dysautonomia page before adding it to your cart.This is the easiest way to give back, make your normal purchases and help out at the same time! Thank You supporting me and others like me :)

Sacred Heart PICU Gift Drive : Fellow blogger Amber  at Averie Lane started a PICU gift drive three years ago in honor of her beautiful daughter Averie. You can read Amber and Averie's story Here . For three years Averie's family has been collecting Kohl Cares gift sets to give to each child in the Pediatric Intensive Care Unit at Sacred Heart Hospital during the month of December. You can contribute by spending just $10 to help brighten a little boy or little girls day. Your ten dollars will be used to purchase one book and one stuffed animal. The Kohls cares program gives 100% of the profits to kids healthcare and education initiatives. Top that with giving the gift to a sick child and you've helped out not once but twice!CLICK HERE TO CONTRIBUTE

Go Fund Me:Many of you have read my story and know that I have been looking into getting treatment to stop the progression of my illness. Earlier this year I found the POTS Treatment Center in Dallas, Texas but wasn't able to afford the expensive program. With the help of family and friends I started my donation page and was able to raise the money for my treatment which starts next week! Go Fund Me is a fundraising website that helps people spread their stories and raise money for various needs such as medical bills and treatments, funeral costs, houses to support those who have been affected by natural disasters ect.. You can find people in need of money in order to get POTS treatment by searching "POTS" or "Postural Orthostatic Tachycardia Syndrome" in the search engine on the go fund me page. You can search for specific needs to donate to if you have a different cause that is near and dear to your heart.Even the smallest donation helps :)

Thank you for reading and contributing what you can this holiday season

It's OKAY...

Over the past few years I have learned that nothing is really set in stone, things change, to expect the unexpected, and that  chronically ill patients are generally the exception to the rule. The ups and downs of having a chronic illness can sometimes feel like a crazy roller coaster ride that affect you not only physically but emotionally. Here are my top 5 ITS OKAY'S ...the things that I've learned to accept as normal and the philosophies that have made life easier

Its OKAY:

1. To grieve-- when you have a chronic illness you suffer a lot of loss whether it be relationships, work, home, finances, ability to take care of yourself and others, and the biggest one of all your OLD LIFE. In the beginning I tried the tough guy approach to everything , I wasn't going to let my illness get me down. I slowly realized that in order to move on you have to acknowledge your loss and take the time that you need to get over the sadness. Most of us connect grief to the 5 stages 1. denial 2.anger 3. depression 4. bargaining 5. acceptance and think of it as ending with acceptance. I have learned that grief is cyclical , it comes and goes with each new challenge.

2. To ask for help --this was a huge obstacle to overcome for me. I am very stubborn and prideful and asking for help has always been difficult for me . I am fortunate enough to have family and friends that are beyond amazing who always ask to help . My immediate family and best friends know how I can be so they helped out even when I said I didn't need it. Most of the time I actually did need it but was too embarrassed to ask .Sometimes when your pride gets too big it can actually hinder you. I was searching for treatments that could help my condition and came across a treatment center but it was very costly [ I start treatment this month and will keep you all updated  :) ]. My family and I decided to start a donation page  to help cover treatment costs and medical bills and the response was incredible and heartwarming. It taught me that people are willing to help and support you but you have to give them the chance. Embrace it.

3.To feel contradictory-- There are times when I feel like I can conquer the world and days when I feel like everything is crashing around me. Some days I want to continue to search for new treatments and there are days when I'm "over it ". Just when I think I want to give up on work completely I think I may have a shot at going back someday. Contradicting yourself is not crazy... it's normal. Its your way of processing what has happened and figuring things out as you go along.

4. To say no-- If I think that something or someone is important enough I always say yes no matter whatever else I have going on. The week that I had my first seizure I had worked 65 hours followed by a weekend packed with a graduation in the bay area, a drive that same night to another graduation in the valley about an hour and a half  away, hosting a baby shower, driving back to the bay for a graduation party, back to the valley for a 30th birthday , and finally back to the bay to go home and sleep before my next work week started. All of the people were very special to me and how could I choose what was more important. Looking back, that was crazy! Now that I am sick I could never keep up with that kind of physical demand and I have learned that the people who love you don't expect you to. Sure they would love to see you but if you can't do it that day they would much rather you stay home than cause more harm to yourself. It was hard for me to give into the truth that YOU are important too and you need to make decisions that will benefit your health.

5. To "give-in"-- The idea of going out in public in a wheelchair was one I grappled with for a while before I finally decided to "give-in". A lot of it had to do with humility. By not succumbing to the idea of using the chair I missed out on activities that I enjoyed. No shopping,no going to my brothers baseball games,  no going out to dinner if I knew the parking wasn't so good. Now I am able to celebrate with friends and do the things I want to do and in the end...who cares if I'm in a wheelchair.Besides my niece has offered to "bling it out" so how could I pass up that opportunity ;) 

Missing out and Making up for it

The most annoying part about being sick is missing out on things that you want to do. I have always been a planner through and through. The kinda girl that has a to-do list for everything and never is too busy to say yes to more plans. Unfortunately, this just isn't the case anymore.

Last week was extremely rough symptom wise and I spent most of the week in bed trying to avoid the inevitable fainting spells. I was hoping that after my IV Infusion I would start feeling better because I had plans for the weekend.My little brother had to go up to University Reno Nevada for a baseball camp to show off his skills to the University coaches ( basically, he's a stud !) and I had planned on going up with he and my mom so I could visit with my cousin and her sweet baby girl who live in Reno. Well, infusion day came and went and no improvements in how I felt. A few months ago I would have pushed my stubborn self to go but I have learned that sometimes it just makes for more of a hassle for everyone and I would end up feeling even worse. So instead I decided to stay home for the weekend. At first I was bummed out of course but thanks to my amazing friends I was still able to have a great weekend.

When I decided to stay home a few of my friends came over to have sushi and watch movies for the night. Plans changed a little bit when the UPS guy showed up with my latest Scentsy order which included 5 different parties! We definitely had our work cut out for us lol. So we created a little assembly line and cranked it out while watching Law & Order SVU re-runs(all three of us are pretty much obsessed and yes sometimes I think Olivia and Elliot are my friends).One of my girls decided to spend the night and the next morning we layed low since I wasn't feeling too hot. By afternoon I had enough strength to grab lunch and take a quick shopping trip in my wheelchair. I was on a mission to find some scarves that would allow me to cover up my port without sacrificing fashion and of course I ended up at MAC and snagged a gorg new lipliner "Currant" to match my current favorite lipstick "Rebel".

       

Sunday I got out my Cricut-an absolute must have for the avid crafter or scrapbooker!-and worked on my brothers junior scrapbook .He's a senior now and it's almost baseball season again so I gotta hurry and catch up! Even though it wasn't exactly what I had planned I was able to still have a good weekend without pushing myself to the next level of sick.

Moral of the story : staying home doesn't mean you have to miss out completely

Thank you for reading and following along :)

Supporting your loved one

Having a chronic illness affects many aspects of your life but I think one of the key players is relationships.I have found that it is really easy to lose touch with friends because of a variety of reasons. I used to be the text book definition of Type A, super outgoing, friends with everyone, goofy, always had more plans than time, the life of the party type. Now I am physically just not capable of living that lifestyle and it is hard to connect with certain friends because we no longer have much in common. For others , I think its easier to distance themselves than see me the way that I now am. It's easier to not see "sick" Brittany and remember "fun" Brittany. Although a lot of people with chronic illness say that having friends that don't understand leads to lost friendships I honestly think that most people don't mean any harm by it , they just don't how to respond to their friend or family member getting sick. 

Here are a few things that you can do as a family member or friend to support your loved one:

• Participate in activities that they can be part of. Hang out at the house , watch movies, paint your nails, low key activities that won't cause any extra stress.
• Little pick me ups - I was having a terrible flare up last week and was unable to leave bed for two days. My mom came into my room with a bouquet of gorgeous hydrangeas that matched my room perfectly. When I asked her what they were for she said " because you are having a crappy day and I thought they would cheer you up." Exactly what I needed! The flowers couldn't take away my sick day but they turned my entire mood around.
• Take the time to learn about their illness .understanding is a huge part of being able to continue a relationship with that person. It shows them that you care enough about them to put in a little work so that you two can connect.
• Offer rides . Many people with chronic illnesses are unable to drive but are still able to go on outings if they have a way there.
• Offer to help cook or clean . These activities are difficult for most people with chronic illnesses.
• Invite them places. If they aren't feeling strong enough that day they will let you know but it is nice to be included. My best friend makes a huge effort in this department. She is constantly asking if I want to come hang out at the house with her and my nieces or if I want to do a target run with her even if that means she has to push a stroller and a wheelchair simultaneously.On the contrary don't send them invites to places that you KNOW they can't go. For example please don't  invite me to go skydiving... I will not feel included I will feel sad lol ( sometimes a little common sense is all it takes ) 
• Just be you. Tonight I was talking to a friend on the phone . She asked how I was feeling and I told her today wasn't the best day. She gave me support and love and we moved on to the next topic.Knowing that you have support does wonders for the soul but it is also important to just be you. Talk to your friend just like you would before they got sick. Life may have thrown them an obstacle, things may have changed but they are still the same person you have always loved.

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But you look fine.... The perks and pit-falls of Invisible Illness

Living with an invisible illness can be both a blessing and a curse. An invisible illness or disability is one that can not be "seen " by looking at the person with the condition. The fact that most people can't tell that I am sick is pretty refreshing sometimes. It's nice to be able to leave the house and not be looked at as the sick girl. The days that I am able to do a little something with my hair, throw on jeans and a cute shirt, and a bold ,bright lipstick I feel like my old self again. These days are nice because no one knows I am sick, there is nothing to give it away and no reason to bring up a long drawn out conversation about illness.

On the other hand it can be very frustrating at times. Since I look completely healthy people don't understand how bad I may be feeling at that exact moment. The chatty lady in the bank line in front of me has no idea that I am seeing stars and on my way to hitting the floor and causing an unwanted scene.The most frustrating thing is definitely  when people stare when they see me in a wheelchair, like I am the lazy girl who wants to use the motorized cart at Target. Ummm ...hello I'd much rather be driving my Camaro than this bright red cart that makes beeping noises when I back up haha. Friends that I once went out with have said things like " you look so good now. I'm glad your better. When are we gonna go out?". Its hard to explain that even though I look fine I am still battling a chronic illness especially when I know their intentions are good.

I think the most important thing to do as a friend or family member is to avoid assumptions.Just be there, and if you aren't sure how we are feeling just ask. Most people with chronic illnesses know their body pretty well and know their limits. If you ask us if we are feeling up to a certain activity we will be able to give you an honest answer. I can't speak for everyone but its a lot easier for me to be honest if you just ask if I'm able to do something. If you assume I'm fine and able to go somewhere or do something I'm more likely to not say anything and try to  push through which eventually ends in me feeling worse.I am the first to admit that you can't really have it both ways. Either I look fine and avoid all the questions or I get misunderstood for looking too normal.Can't have the best of both worlds but a girl can dream can't she ?! 
As a rule of thumb: Just Ask and I will share :)

After writing this post I came across a website that is extremely informative . I would encourage you to read it . As a chronically ill person , it has a lot of information on how to discuss touchy topics with family and friends. For those of you that love  someone with an invisible illness there are postings that may help you gather some more information and insight on what its like to live day to day life in their shoes.http://invisibledisabilities.org/

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What is Dysautonomia? What is P.O.T.S? Is it the same thing?

       

When I was diagnosed with P.O.T.S I had know idea what it was. Even as a nurse, I had never even heard of the condition let alone know what the acronym stood for or what in the world I was in for. P.O.T.S is a much shorter and less complicated way of saying Postural Orthostatic Tachycardia Syndrome. So lets break it down here:

Postural:is a change in position
Orthostatic: related to or caused by standing upright
Tachycardia: a heartrate above normal
Syndrome: used to describe a group of symptoms caused by a medical condition

So basically its just a big fancy way of saying that your heart rate shoots up way high whenever you stand causing a bunch of symptoms. P.O.T.S is a type of Dysautonomia or a syndrome that is caused by your Autonomic Nervous System not working correctly. The Autonomic Nervous System is kinda like the control center of your body . It is responsible for controlling your heart rate, digestive system,blood flow,temperature regulation, thirst and urination and many more functions. Think of your body as a computerized machine. If one simple wire has a short then the entire machine will not work properly. This is basically the same concept in people with Dysautonomia. Our bodies control center has been shorted out and none of its wires can send the correct signals out causing problems in each body system.

When a person with a normally functioning Autonomic Nervous System stands up the blood is pumped throughout their body and there is not much of a change in blood pressure or heart rate, enabling everything else to work right. In someone with POTS or any other form of Dysautonomia stands up we encounter all types of problems. To be diagnosed with POTS your heart rate must either increase by 30 beats per minute or more or be 120 beats per minute or more within ten minutes of standing, every time you stand.

• Our arteries and veins are constantly wide open so when we stand up instead of the blood pumping throughout our bodies like it should it all pools to our feet
• Our heart has to work extra hard to pump the blood from our feet to where it is supposed to go . This causes Tachycardia or a high heart rate
• The lack of blood flow to our brain causes dizziness,difficulty finding the right words, trouble thinking, memory issues,impaired concentration ,extreme fatigue,problems sleeping, exercise intolerance, pre-syncope(near fainting) and sometimes we pass out .Hence the blog name Fabulously Faint 
• Poor perfusion to organs can bring on symptoms such as  temperature intolerance, icy cold extremities,headache,muscle weakness,chest pain,shakiness,and trouble breathing
• Autonomic Dysfunction may cause abdominal pain and chronic nausea and vomiting
• Since our ANS doesnt work we often have electrolyte imbalances. This coupled with excessive urination can cause chronic dehydration so many POTS patients get IV fluids on a regular basis ( I get 2 Liters of fluid through a chest port with the aid of a home health nurse twice a week)
• We also encounter  adrenaline surges which cause that anxiety feeling that you get when you are scared or injured. The shakiness, trouble catching your breath, chills,hot-flashes,a nervous feeling

It is important to know that there are varying levels of POTS and Autonomic Dysfunction. While some people get dizziness while standing but are still able to work, go out, and go to school others are completely debilitated and need feeding tubes for digestion and wheelchairs every time they get out of bed. Most people are somewhere in between. Hopefully this helps you understand what POTS is and how it can impact a persons everyday life.



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