Cupid’s IV

Since today is the day of love, I thought it would only be appropriate to discuss a subject that hopefully all of you have been blessed enough to experience.  Love is one of the most powerful emotions a person can experience.  It can change a person’s life in many ways.  I have been intrigued lately by what love can do for people who are suffering from chronic illnesses.  You can go on the internet and find an exuberant amount of research that shows the effects of love on one’s brain.  These studies show that when one is falling in love or actually in love, their brain is stimulated in the same exact way as if they were high on cocaine.  There is a significant increase in the amount of dopamine that is released into the brain.  There are lots of studies explaining the chemicals included and contributing to a person experiencing the euphoria of love.

So with all these additional chemicals being released and essentially making a person “high” while experiencing love, I wonder how that would/could  positively affect someone who is chronically ill.  From my own experience I can admit that while I have been in love it does help my symptoms and my ability to cope with them on a daily basis.  When I am with the person I have fallen for, I feel healthier.  I can do things that I wasn’t able to do prior to falling in love.  My desire to live life to the fullest has been intensified.  I once found myself taking a hike through the woods on a summer day.  Now, I wasn’t hiking up hills or anything but being in the warm weather and taking any sort of a walk was previously out of the question.  But while I was with this person I could do it.  I still struggled and still required breaks and even a piggy back ride at one point, but my will to try something like that was amazing.  I find it incredible that the simple presence of a person we love can make us soar to new heights that we hadn’t though possible.

I know there are medications out there for depression and other conditions that manipulate dopamine and other chemicals in our brain to produce a better state of mind.  I can’t help but wonder with today’s modern technology and advances in medicine, why they can’t recreate the state of being in love through a medication.  I really feel if there was a true “happy pill” that could induce the state of mind where one is falling in love, it would be incredibly beneficial for those suffering from chronic illnesses.  I know I would certainly give that pill a shot.

Now on the down side of this, experiencing this euphoria that enabled me to push through my illness a bit more than usual has actually affected me negatively with the other people around me.  I have friends that truly believe that my illness is psychological because when I am with someone and in love I am happy and my illness “gets better.”  But when I am alone and not in love I “get worse.”  So I am essentially viewed as exaggerating my symptoms and illnesses when I’m alone because I don’t “push” myself as much.  This is so incredibly frustrating to me.  I actually had one of my best friends say this to me.  She used to be someone who understood and supported my illnesses more than any of my friends.  She had followed some of my facebook updates and apparently she felt I wasn’t sick during the period where I dated my ex for three months.  Then she saw on facebook that we had broken up and at the same time I spent 2 weeks in the hospital.  So now she thinks that my love life directly “cures” and “causes” my illnesses.  In reality, I was sick throughout my entire relationship with that person.  I just try to only post positive things on my facebook as much as possible.  And my ex and I actually broke up while I was in the hospital because during that hospitalization I was shown his true colors and the fact that I was not enough of a priority for him to be with me while I was sick.  When a person only works 3 days a week and they can’t spend more than a total of a day and a couple of hours at the hospital with me, then it isn’t going to work for me.  I’m chronically ill and I want to be with someone who will be there for me and support me when I need them the  most.  When my “best” friend said these things to me I realized that she truly doesn’t care.  They obviously saw that I was hospitalized and going through a break up and yet the only thing they took out of that was that my break up must have been the cause for being in the hospital since my love life took a nose dive.  I realized that night that I had lost yet another friend thanks to being ill.  It saddens me that these people who are actually medically educated do not understand these illnesses or the clear medical evidence that supports why a person feels better when they have love in their life.  I’m very thankful that I am a person who can view a situation openly and analyze it based on relevance and rational facts.  Assumptions are a weapon of heartbreak to a person who is chronically ill.  It’s a sad reality.  It scares me that being in love may actually end up causing more issues with the people around me believing that I have a legitimate chronic illness.  I kind of feel like it is common sense that a person is more motivated when they are in love.  Remember being in high school and having no problem getting up in the morning because you knew you were going to get to see your first love that day?  Don’t you remember having your heart broken for the first time and feeling like you didn’t want to do anything but lay in bed?  I mean, it happens to everyone, not just people who are ill.  But somehow for people with invisible illnesses it seems that when we are happy and in love our illnesses are obviously fake because we don’t appear to be struggling as much as when we are alone.  So naturally, we must be faking.  Ugh…some people are just plain stupid.

Since I have been diagnosed I have lost a lot of important people in my life.  Friends that I thought I would have for my whole life are now a distant memory.  I’ve learned more about life in the past 15 months than I have in the past 15 years.  And in conclusion, I choose cupid’s IV.  I would rather be in love and feel stronger.  I would rather have my true best friend next to me who will support me through absolutely everything.  So what if I am perceived that I am faking my illnesses.  Those people that have those thoughts seriously need to re-evaluate their abilities to be a friend let alone a best friend.  I’ll take my soul mate any day over these half-hearted friends who seriously think I am only ill when my life is lacking someone to love.  I’m ready for the dopamine rush and the euphoria that gives me a day where I forget I’m sick for one single hour.  We don’t have to prove ourselves to anyone other than the people who truly love us…and we know who those people are.  They are the ones who have never once questioned our illnesses.  They have just been there for us.  I’m very grateful for the people I have in my life like that.  I love every single one of you. You know who you are.  For those of you reading this that are chronically ill.  Take advantage of this day of love and reach out to those people in your life who are your true supporters.  Tell them thank you today and that you love them.  We certainly couldn’t make it through our journey’s without people like them!  I want to give a special thank you to the friends and family of mine who have always been my support system since the very beginning.  They have never questioned whether or not I’m sick and they have been there no matter what.  My brother DJ, Christina, Bruce, Curtiss, Ashlee Smith, Joanna, Mike, Christole, Crystal, Jenn,  and KC.  You all are so incredibly special to me.  I love you very much.  Happy Valentine’s Day everyone!!!

Don’t you know how to Google it? GOSH!!!!

Ok, first and foremost, you need to know this is going to be an emotionally charged blog.  This is something I have been through myself.  It is something I have watched my brother deal with and now I am learning that a friend of mine, who is very dear to me, is going through it with her family as well.  Everyone suffering with an invisible illness has walked in our shoes on this particular topic, unfortunately.  My fellow invisible illness warriors will understand the emotions throughout this blog.  Those of you who are not suffering from an invisible illness may not understand it.  If you find yourself questioning our feelings, thoughts and emotions while you’re reading this blog, maybe you should put yourself in the shoes of someone close to you who is suffering with any invisible illness.  Because trust me, to those of you out there who continue to refuse to understand what we are going through, who continue to make comments about our poor health generating from something in our “head”, we certainly wish there was a pill or something you could take that would induce our illness on you for at least a day.  I assure you after that you would never question our integrity and honesty again.  Until that pill is made, which we all know will never happen, we will continue to write blogs like this one and hope that one day while you’re reading these maybe something will click with you.  Maybe you will realize that you are not a doctor and even if you or someone close to you is a doctor or a nurse, that doesn’t mean you can play games of “Let’s Properly Diagnose the Sick Girl”.  Here is a news flash: THERE ARE RARE ILLNESSES OUT THERE!!!! There are illnesses out there that even doctors don’t know about, let alone a nurse.  And another breaking news alert: THESE ILLNESSES DO HAPPEN TO PEOPLE AROUND YOU!!!!

It always amazes me how someone can come home after having a life altering doctor’s appointment and not have the immediate support and sympathy from everyone around them.   When someone you love comes home and shares with you that they have been diagnosed with an illness, how could you ever question them?  How could you ever have the nerve to speculate that what their doctor has told them is not what is actually wrong with them?  I understand that sometimes doctors misdiagnose people, but if a person has received a diagnosis that is the exact description of the symptoms they have been suffering from, then how in the world could you ever question that diagnosis?  GOOGLE IT PEOPLE!!!!!  I know you think you are smarter than the doctor that just delivered the diagnosis and I know you think because you know a nurse that the doctor absolutely must be wrong, but for the love of God let’s Google the illness and learn about it before you start saying that this poor person who is genuinely suffering is clearly suffering from depression or is embellishing what is going on or is doing this for attention.  This may be shocking to you, but these diagnoses that you refuse to believe in, are ACTUAL MEDICAL CONDITIONS.  Let’s just use me for an example.  I think my illnesses will get the point across.

POTS- or Postural Orthostatic Tachycardia Syndrome.  This is an invisible illness.  Even though you can’t see it at all, it is life altering.  Because of this illness I have lost some of the closest people to me in my life.  These people do not believe that I am sick.  They don’t believe that I struggle on a daily basis.  But I haven’t just lost friends.  I’ve lost my job.  I’ve lost my marriage.  I’ve lost the ability to do some of the things I love the most in my life, like being a wedding planner and playing rough with my two sons.  If you Google POTS, there is plenty of medical information available for you to learn what this illness does to your body.  If you can read, you can learn how I am suffering with this debilitating invisible illness.

EDS Type III- Or Ehler’s-Danlos Syndrome Type III. Now let me be clear with this invisible illness.  I have not received a firm diagnosis for this illness.  However, if I see the geneticist and do not receive a diagnosis for this condition, I will be more than shocked.  I would be willing to bet a significant amount of money that I do have this illness.  With that being said, if you Google Ehlers-Danlos Syndrome Type III, there is a significant amount of information for you to educate yourself on this illness.  Again, if you can read you can learn that this is a real illness that can alter someone’s life drastically.  You will learn that people with this condition live in pain every single day.  You will learn that this illness can cause your joints to dislocate very easily.  You will learn that over time people with this illness will suffer joint degeneration.  They are also prone to other conditions like severe Gastrointestinal complications.  Gastroparesis is a common complication from EDS.  (People with POTS also suffer significant GI problems…for a person suffering with both of these conditions its really bad.)  All of this can be discovered if you simply read about these conditions.

There, now you have some background and an example to base things on while reading this blog.  The most frustrating part for me living with these illnesses is that sometimes reasons can’t always be found for why we are sick.  Let me enlighten you with further examples.  I mentioned GI problems.  This is a big problem in my life.  I’ve been accused of being bulimic because after I eat a meal sometimes I throw up.  What people refuse to believe is that this isn’t by choice.  I’ve even vomited in front of people where they can actually see that I am not sticking my fingers down my throat and making myself puke.  But somehow, people think they know everything and are convinced that I’m doing this to myself.  Same goes with the GI pain that I experience.  There have been days that I have pain so severe I have no other choice than to go to the emergency room.  There have been times this has happened multiple times in one week.  I’ve even been hospitalized because it has been so severe.  And on a number of occasions, I have been discharged from these hospitalizations with no explanation as to why I am experiencing severe abdominal pain.  Of course because of this, people have accused me of lying, being a drug seeker, wanting attention etc.  This is just ridiculous.  Both of my illnesses are known to cause GI problems.  WHY CAN’T PEOPLE GET THAT THROUGH THEIR MINDS!!!  It is often speculated that I am suffering from severe depression and that my symptoms are simply psychosomatic.  Some people have said that I must be suffering from some sort of mental illness that is making me want this much attention.  I have one firm and official diagnosis that causes GI problems…very severe GI problems.  And it is likely that I will receive a second diagnosis (EDS) that causes even more severe GI issues.  But people say I’m mentally ill?  I tell ya, the meaning of family and friends certainly has changed these days.

So, you can go Google these illnesses, view the paperwork from the doctors saying I have these conditions and yet you say I’m only depressed?  Since we’re all doctors and speculating on each other, here is my speculation about you…you are the one with the problem.  Someone in your life that is close enough to you that they are sharing sensitive, life changing medical situations with you, and you are choosing not to believe them.  You are questioning their integrity.  You are questioning their honesty and accusing them of lying to the people they love.  You are painting a picture to others where they are a bad mother/father.  You are accusing them of being self-centered.  These are all things you are insinuating about another person.  A person who loves you and whom you are supposed to love.  A person that is either your close friend or a part of your family.  Last time I checked we are supposed to give our endless support to people we love.  Not question them and constantly accuse them of terrible things.  If my illnesses were called Postural Orthostatic Tachycardia Syndrome Cancer and Ehler’s-Danlos Syndrome Cancer Type III would you immediately believe me then?  I’m willing to bet you would have and you never once would have questioned a damn thing.  I hope you are ashamed of yourselves.  You definitely should be.  The worst part is that you likely aren’t ashamed at all…and that, my friend, is because YOU are the problem.

Advocate of Invisible Day defends attack on stranger w/ invisible illness

Hey there, ladies and gents. This is DJ IN THE HOUSE!

This is only my 2nd blog I’ve wrote for Invisible Day, but one I’m very motivated and excited to write to share with all of you. My sister, Nikki, who is Invisible Day’s head blogger has had a very bad, emotionally-draining day that caused her to end up in the ER with a horrific migraine; please keep her in your thoughts and tweet her any words of encouragement you may have to @invisible_day. She will read them when she wakes up – let’s have her wake up to some nice tweets that will get her day off to a pretty good start!🙂 She’s going thru heartbreak of losing ANOTHER longtime friend, one of probably 12-13 years, because they’re yet another adversary of invisible illness – one who says they understand but clearly doesn’t by their words, judgments and actions. I will let Nikki talk about this instance in another blog if she chooses to.

I actually want to share a very positive message of one our very appreciated advocates of Invisible Day. She does follow Invisible Day but has also been a very dear best friend of mine from the beginning since I got sick 5 years ago.  I want to share with you the actual text message I received from her today; if I were to summarize it into my own words, it would take away from how special the moment was to me and will be to all of you:

“I have to tell you about this! I was leaving class and in the parking lot, a younger guy was parked in the handicapped spot. These 2 idiots walking behind me made some comments, “He’s not handicap” and “maybe he’s handicap in the head” then laughter…and then “this is what’s wrong with society today, anyone can get a handicap spot”… Oh my gosh, I turned around… “maybe he IS sick. Maybe he’s got an illness that you just can’t see. Did that ever cross your small minds? Everyone who is sick or has an illness isn’t always visible. Maybe he has a stroke if he walks too far or maybe he hides a wooden leg really well,” They didn’t say anything so I continued… “How would you feel if your mom has an illness that makes her pass out 2 or 3 times a day? Would you want her to be made fun of because she parks in a handicap spot? no, and I’m sure he doesn’t want to be made fun of either. Don’t be jerks!” Then I walked away. When I turn back around, they were still standing there.”

Invisible Day’s ultimate mission is for there to be many more advocates like Melissa who would do this same thing and not be afraid to stand up to and speak their mind to someone passing this kind of incorrect and idiotic judgment, even to defend a stranger. I have no doubt in my mind these 2 men will ever pass judgment again, no matter who it is using a handicap spot. And I’m sure this young disabled man’s day was brightened and will be a moment he will never forget, just knowing there actually are people in the world like Melissa who actually KNOW about invisible illnesses, let alone is aware enough to defend them. (BTW, their statement is obviously not even true that just anyone can get a handicap spot today. If that were the case, the BMV wouldn’t require a doctor’s prescription for the reasoning you need one! I agree with you, Melissa, that they are idiots) Anyway, thank you for this, Melissa. And all of your other support you’ve given. I’m so thankful to call you my friend to everyone reading this; I am very lucky to know and have you in my life. I think life for all who suffer from an invisible illness, or even visible, would be so much better if they had a supporter and advocate like you in their lives.

Even if it’s one person who we have as an advocate, we’re off to a good start and that’s enough to keep the momentum going. And the more readers who read this and the more people you share it with and recommend they read this, the more people there could be out there like Melissa. And the more likely of a chance that a person with an invisible illness doesn’t end up hurting from the cruel judgment passed on them and bullying from the lack of knowledge the public has on invisible illnesses.

Heres to everyone having a great day!🙂

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Jaydon Kenneth…an angel on earth

In my life I have many blessings. I have been lucky enough to have loved and been loved more than once.  I have a beautiful family, while they may not always support me or understand me, they love me a lot.  I have been given many great things in my 29 years.  But nothing holds a candle to the blessings I receive through the love of my children.  Jaydon and Cayson are the definition of beauty in this world.  There is nothing more precious than their smiles.  No better music to my ears than their laughs.  And there isn’t a medicine in the world that can make me feel as good as their kisses and hugs.  I know every Mom says they have amazing children, but my children really are angels here on earth.   Cayson is young and I can see in his eyes, actions and words everyday that his soul is practically a replica of his big brother’s and I cannot wait to see him evolve into the beautiful little man I know he will be.  But Jaydon is already there. 

Jaydon Kenneth was born on January 21, 2002 and he changed my life.  Absolutely changed my life.  I was 19 years old and no where ready to be a Mom but the moment the doctor laid him in my arms, that was when I truly began to live.  From his first moments of life, Jaydon has been such an amazing person.  He was the perfect baby.  He barely cried, was always happy, slept through the night, and has always been connected to his Mama through our souls.  For ten years now Jaydon has been my best friend.  There is no one that can take my pain away and make me forget about my illnesses like that boy can.   His heart is so big and his love for the world is indescribable.  He truly is special.  I know without a doubt he will change lives.  He already has done this to be honest.  He changes mine a little more every day, for the better of course. 

Jaydon is very aware of the fact that his Mama is sick.  He worries about me tremendously and bless his heart, he prays for me everyday.  I’m always very cautious about what I say in front of him about how I’m feeling or anything regarding my health really.  But I’m not fooling him.  Jaydon and I share a soul and when I hurt, he hurts.  He knows when I’m having bad days.  He knows when I’ve been struggling with insomnia.  When I have a migraine.  When I feel nauseated.  When I’m dizzy.  When I’m weak.  When I’m tired.  When I’m short of breath.  All these things, he knows.  And he is so incredibly encouraging and helpful.  He always asks how I’m feeling or if he can do anything for me.  He constantly reassures me that he doesn’t care that he has a Mama who can’t “do” things.  Over the past year my husband left me and I lost my job due to my illness.  I was struggling, to say the least, when Christmas time approached recently.  I talked to Jaydon about how this Christmas might be different and Mama might not be able to give him as many presents as I usually do.  As always, his response blew me away and brought tears to my eyes.  “Mama, I’m happy to just celebrate Jesus’ birthday and have my family together.  There is no better Christmas in my eyes.”  I truly don’t know what I ever did to deserve this little boy and be able to call him mine.  I’ve got to be the luckiest Mama on earth. 

Jaydon has been my biggest supporter aside from my brother since my POTS diagnosis.  When I update him about this blog and tell him how well it is doing, all I can see in his eyes is pure pride for his Mama.  He is truly so proud of me.  See, he is special because he knows in his heart of hearts that the true treasures in this world have to do with people, love and God.  He measures success and happiness in the lives we affect and people that we help.  So he has never been more proud of me than he is now since his Mama and Uncle DJ have created Invisible Day. 

I’m always very honest with Jaydon when he wants to discuss what’s going on in our lives.  I try not to sugar coat things and I definitely do not lie to him.  I’m sure it would be easier for him to deal with if I did mask the reality of our lives, but what good does that do?  I want to be able to communicate with him and give him the tools to tackle anything that comes his way in life.  He is extremely mature for his age and so very rational.  It is scary sometimes how incredibly mature he is at the age of 9.  I believe that is partially because he has an old soul.  He is such a beautiful person, I can’t possibly describe it all to you.  But I’ll try.  In this blog I will tell you a few things my son has done that have touched my heart and made me so incredibly proud to be his Mama. 

A few weeks before Christmas, Jaydon and I had that talk about how Christmas would be different this year.  He was so incredibly understanding and supportive, I was blown away.  Not only did his words amaze me, but his love and support for what I have been going through absolutely warmed my heart.  This discussion about Christmas presents led to some questions he had about how we were getting by since I wasn’t working.  As always, I answered the questions honestly and we both gave thanks for the people we have in our lives helping us.  The next day we had very warm weather and it was quite a beautiful day.  After he completed his homework, he asked me if he could go to his friend’s house to play for a while.  I told him to be home in an hour and off he went.  He came in the door about 45 minutes later and trotted off to his room.  He was up there for quite a while and I was worried he and Caiden had fought or he was upset about something.  So I went and checked on him and he was counting his money from his penny bank.  (Well, that’s what I thought anyways.)  He assured me he was fine and we went on about our evening.  Just before bed that night he asked me if we could talk.  I sat down on the floor of his bedroom with him and he handed me $9.72.  Of course, I was confused.  I didn’t understand where he got the money and why he was giving it to me.  What he said to me next absolutely blew my mind.  When Jaydon left the house to go to his friend’s house earlier that day, he did indeed go to Caiden’s house.  But he also went to all his other friend’s houses in the neighborhood as well.  He asked to speak with each of his friend’s parents.  Jaydon sat down with these adults and shared with them that his family had been chosen by God to fight the fight of POTS.  He told them that his Mom and his Uncle DJ were trying their hardest to teach people about our illness and try to raise money so that doctors could find a cure to make his Mama feel better.  But then he told them that because his Mama is sick, she can no longer work and it has made it hard for her to even just pay bills. He told them that his Uncle DJ was helping so much but he also takes care his Mamaw who is disabled from a brain aneurysm.   He gave them a piece of paper with the web address to my blog and told them the best thing they could do for his family was to read about our illnesses and share his Mama’s blog with their own friends and family so that they could understand the difference his Mama was trying to make in the world.  But then he asked them if they had any spare change they could donate to help his Mama either pay a bill or buy an extra Christmas present for his little brother.  He repeated this to all the parents of his friends in our neighborhood and came home with $9.72.  To this day I cannot put into words how I felt when I heard all of this.  I am so incredibly proud that my son even thought to do this.  Most children are concerned with riding their bikes, playing sports and hanging out with their friends.  While Jaydon enjoys all those things, he also wants to make a difference in the world and help his family get better.  He also wants to help all the other people suffering with POTS get better.  In the end I wanted Jaydon to keep the money but he wouldn’t allow it.  He even said if I refused to use it to pay a bill or buy a present for Cayson that he would simply take it to his dad’s and ask them to help him send it to a POTS charity.  Amazing.  Simply amazing.  He is so very special. 

Later that night I actually became very upset.  I felt as if my son is burdened with worries and concerns that no child his age should have to deal with.  I cried so hard that night thinking about my son speaking with his friends parents and having the courage to ask if they could help his family in any way.  I absolutely hate that my son even had to think about those struggles that his Mama is experiencing.  But then I felt at peace.  I realized that Jaydon doesn’t HAVE to be burdened.  Jaydon chooses to be supportive and chooses to be involved.  He could very simply go about his day and not ask the questions that he asks.  He could choose not to be so attentive to his Mama’s symptoms and not notice them.  He could choose not to help.  Jaydon’s support in every way simply reassures me that God chose our family for a reason with these illnesses.  He chose us because we can make a difference.  We can touch lives and help people.  I went to sleep that night at peace and so very proud of my son.

Fast forward to this past week.  I picked my son up from his dad’s house and he had a packet from school for the annual Jump Rope for Heart program.  Every year Jaydon is very passionate about it.  But this year was a whole new ball game.  He immediately told me that these children who have “special hearts” are suffering from invisible illnesses just like the ones I am trying to raise awareness for with this blog.  I was very proud that he made that connection and so happy that he understands what an invisible illness truly is.  It isn’t just POTS or RA or EDS, not just the illnesses that affect his own life.  He knows that what we are trying to do with this blog branches out to so many more illnesses out there.  He truly gets it.  I was so proud of him.  Then he kept talking.  Jaydon has a savings account at his Dad’s house where he earns money for his chores and extra efforts and then chooses (not forced to but chooses…God I love that boy) to save his money in his savings account for something he really, really wants to purchase.  On this day he had currently saved $64.00.  He proceeded to tell me that in the envelope for Jump Rope for Heart was the first donation of $30.00.  When he arrived at his Dad’s house from school that day he told Mommy Amy (his stepmom) that he wanted to withdrawl his $64.00 and donate it to Jump Rope for Heart because these kids were suffering with invisible illnesses and he knew how important it was to help them.  Mommy Amy, knowing how hard Jaydon had worked to earn that money, really wanted him to save some of it for himself or something that may come up later.  Jaydon told me that he proceeded to negotiate with her.  (LOL-priceless)  They decided on a final number of $30.00.  Roughly 50% of the money he had been saving for a long time.  I was completely speechless.  My nine year old son was choosing to donate more money than most people would at all.  Once again, my son has left me completely amazed and feeling more proud than I ever thought possible.  He is currently up to $80.00 in donations in cash and he is determined to make a difference for these children with “special hearts” and collect as much money as he possibly can.  He even went as far to say that if he won one of the nicer prizes through the fundraiser that he would like to look into donating it to one of the kids that are suffering and being helped by Jumpr Rope for Heart!  I just cannot tell you how incredibly lucky I feel to know this young man.  He changes my life everyday and is clearly giving it his all to change the lives of many, many people.  He told me that for his birthday in a few weeks, he would rather our family donate money to his fundraiser than get him gifts.  This child is literally an angel sent to this earth for the good of mankind.  There is no other explanation.  He is exceptional.  He is the most special child that I know. 

As a thank you to him, I am sharing his story with all of you.  And I hope you can find it in your budget and heart to donate anything you can to help him reach his goal of $1000.00.  We do have $80.00 collected in cash and that does not show on his website in his goal area but we do have that amount.  My son is an exceptional human being and he truly wants nothing more than to make a difference for these kids.  I hope you can help by donating as your own personal thank you to Jaydon and the beauty he brings to this world every single day.  The link to his online donation page is below.  Thank you everyone for taking the time to learn about Jaydon.  He is what keeps me going each and every day.  God Bless.

Invisible Illness Awareness Video

Invisible Day Awareness Video

The information in these videos are 100% true.  This is a character depiction of Invisible Day founder’s, Nicole and DJ.  Please share this video!!!

To Treat or Not To Treat…

We’ve all seen the commercials on medications where the list of side effects seemingly causes a whole new illness.  With some of the medications that are used today, it can really be a case of pick your poison.  Some people with certain illnesses not only deal with this issue, but they have bigger issues to consider.  What do you do when the list of side effects on a medication are the exact symptoms you suffer from with your illness?  Now that’s a whole new level of pick your poison!

Sidenote: I just saw a post on my friend’s facebook page that her mom is in ICU because her heart rate is 173 and her blood pressure is 78/40.  My immediate thought was: “Hell, that’s a good day for me!”  Such a sad life we POTSies lead.

Pardon my ADD, let’s get back on track! So, what do you do when you are faced with such a predicament?  My initial urge is always to drive back to the prescribing doctor’s office and shove the prescription in that doctor’s mouth.  But that won’t get me anywhere now will it? 

It becomes a treacherous journey of medication experimentation.  Most medications that I have been prescribed since I was diagnosed have listed the following side effects:

  • headache
  • nausea
  • dizziness
  • rapid heart rate
  • sleep disturbances
  • sleepiness
  • insomnia
  • abdominal pain
  • diarrhea
  • constipation
  • weakness
  • fatigue 

Is this a symptom list I’m taking to my POTS specialist or a list of side effects?  BECAUSE THEY ARE IDENTICAL!!! How in the world are you supposed to make the decision to start a medication that is treating one thing, but has the potential to aggravate every other symptom you deal with??  It is absolutely frustrating.  POTS doesn’t have one definitive treatment.  Things that help one patient, does nothing for the next.  So you enter into this game of trying medicine after medicine until you find something that actually helps you.  Meanwhile, during your quest to find something helpful, you are subjected to all these medicines that are essentially making you feel closer to death’s door because the side effects are the same problems you are already dealing with.  It is an absolute nightmare and frankly it makes me very hesitant every time any of my doctors throw out a new medication name. 

At the end of that day, it is a decision we have to make.  Do we take the chance of feeling much, much worse than we already do?  All in hopes that maybe, just maybe, this medication might be the elusive “one” to make us feel better.  Once again, all we can do is trust that our doctor knows what he’s doing when scribbling on that prescription pad and pray that he isn’t one of the many Dr. Douche Lord’s in our life. 

Education is key. Research your medicines.  And say no when you’re not comfortable.

Dear Dr. Douche Lord

Dear Dr. Douche Lord,

You do not know what my illness is.  When I say I have POTS you ask me what it is.  When I describe it you brush it off.  You ask me why I am on certain medications.  When I tell you the reason you make your own assumptions in your head.  You don’t believe me when I tell you my heart rate was 200 bpm from climbing one flight of stairs. 

Dr. Douche Lord, you keep referring to POTS as a cardiac condition.  When I correct you I get attitude.  You tell me my pain is psychosomatic because all your fancy machines are not giving you something tangible to look at or fix.  You deny me pain meds and accuse me of being a drug seeker.  You argue with me when I’m crying in fear because you believe I am faking everything. 

Dr. Douche Lord, because I have a history of depression (which is caused by living with a debilitating chronic illness) you automatically assume that everything I am experiencing is stemming from my depression.  You assume that because my medication list includes seraquel that I must have significant mental illnesses.  You give me push back when I tell you I am taking it for sleep aid with my chronic insomnia.  You tell me I need to see a psychiatrist regularly.  I wish I had the courage to tell you to go to hell in that moment. 

Dr. Douche Lord, you ask me why I presented in ER triage with chest pain and ask if it was because I wanted to get a bed quicker than others.  You ask if I truly believed my life was in emergent condition to come to your ER today.  You tell me I can’t be as weak as I say because I’m barely dehydrated.   You raise your voice and tell me I’m not getting pain medicine because nothing is wrong with me.  You likely have put my name on a list that flags other doctors to be aware that I am a drug seeker.  You have just sent me home while my heart rate is still 160-170 and my blood pressure is 70/40. 

Dr. Douche Lord, now on the flip side of things, if there is something else going on unrelated to my illness you simply say it is because of my illness and dismiss all interest in making me feel better.  I ask for IV fluids because hydration is key with my illness even if it is a good day and something unrelated is happening and you once again assume I am looking for some sort of narcotic injection. 

Dr. Douche Lord, I am someone who has been sentenced to a lifetime of office visits, endless needles in my arm taking a disturbing amount of blood from me hundreds and hundreds of times.  I will go through too many scans, all of which are harmful to my body.  I will spend so many days in my life hospitalized.  Every single day of my life I will take medication after medication hoping for just one good day so I have enough strength to do more than watch cartoons with my beautiful sons.  I will have numerous surgeries, putting my life in doctor’s hands.  My life will always be in the hands of one doctor or another.  And because of you, Dr. Douche Lord, I have lost faith in modern medicine.  I have lost faith in a doctor being able to be compassionate to their patient.  I have lost faith in a doctor genuinely accepting the intellectual challenge of trying to make me better as opposed to conforming to the stereotypical asshole of medicine who does what he can to get to the next patient. 

Dr. Douche Lord, what if I were your daughter?  What if I were your mother?  What if I were your sister?  Would you treat me differently?  Would you allow your collegues to speak to me the way you just did?  Would you allow my complaints to go dismissed?  Would you let me suffer through the pain for hours and hours?  What would you do differently if I were your family? 

When will you realize, Dr. Douche Lord, that I AM SOMEONE’S FAMILY. I am someone’s Mama.  Someone’s sister.  Someone’s everything.  And everytime you treat me like this you eat away a little bit more at my will to pursue the best medical care I can.  Everytime you make me feel like this I lose a little more faith in doctors of today.  And quite honestly you are very lucky, Dr. Douche Lord, that I have POTS which limits me from standing up.  Because if I didn’t have it, I would surely be tempted to stand up off this table…walk over to you, and jack you in the face for every single patient who has ever been treated like crap by a doctor who just doesn’t care. Until then we will pray for your retirement.  Good day Dr. Douche Lord.

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